#the mental health system as well as the disability system im working my way through right now

[cy-cyborg]

So, there's a lot I want to say about the paralypics, but every time I try I just... can't articulate what I want to say without it turning into a monster of a post that puts my writing advice posts to shame lol. This includes in response to the anonymous asks I got on the topic btw. So I'm going to try and summarise my thoughts here.

As someone who was working towards the Rio paralympics - who was basically one of the people they were actively training to be the next paralympians and who got to go if their choice first athletes had to drop out, the Olympics and paralympics are a... touchy subject for me. I loved playing. I loved my sport. I loved the people I played with. I loved the people I played against. But the way the public and people in power treats disabled athletes sucks. It Really really sucks. and it hurts to talk about.

The vast, vast majority of us aren't paid. We are expected to train at the same intensity as the Olympians with none of the breaks and none of the support to do so, resulting in injuries that are disabling in and of themselves, while juggling normal jobs. many of the paralympians are also in school or at university as well. both schools and jobs see these elite athletes as dedicated hobbiests at best.

I had a friend who were fired from their job because they were denied time off to compete at the paralypics and well, if i had to choose between the paralympics or stay at a shit job paying minimum wage, I know which one I'd pick, and so she didnt have a job when she came back. I have friends who are still in the closet because their sponsors would drop them if they came out as gay, who ended years-long relationships to keep the funding that allowed them and their teams to compete - funding that just covered the costs of travel by the way. They never saw a cent of it themselves, but it was the difference between us having to pay $50 each for our plane tickets and accommodation and having to pay $2,000Aud + for every away game. I have friends who were supposed to go to Tokeyo but were kicked off the teams weeks before the games because of a rule change that decided they weren't disabled enough anymore, wasting years of work with absolutely no warning. They weren't even given the decency of an appology from the people who made the call. Several went through terrifying mental health spirals over it. It was their life's work, gone. I saw so many friends just give up because their disabilities were "too hard to classify" into the International Paralympic Commity's boxes and who were made to feel they weren't welcome by the system spouting off about its diversity and inclusion and empowerment of disabled people.

And then with all that, the best we can hope for is for the social media teams to turn us into a joke for ableds to laugh at or into inspiration porn to make them feel good about themselves - because at least theyre not us. Because obviously, there are no other options in how to show us/sarcasm.

My phone doesn't even have "paralympics" as a recognised word. I have a Samsung. The company that is currently at the paralympics using them as a marketing opertunity. We aren't even recognised as a word in the phones made by the company that is currently using the paralympics as a marketing opportunity. The phones they're giving the athletes won't even recognise the name of the event that they got it at. If I've spelt it wrong, it's because it autocorrects it every time I try to spell it right, and im dyslexic and can't see the difference until I stare at it for a minute or so.

I just... this isn't even scratching the surface of my thoughts. But I wanted to say at least some of it. It will be the last I'm going to talk about it, at least until the event is over.

[gayaest]

Maybe a weird question but, how are you so informed about disabilities as a whole? Im disabled and an artist too but i struggle with finding info/expanding my knowledge abt disabilities that aren't widely spoken abt :(

I can explain, I think(?) but I had 2 seizures 2 days ago and my brain and body are a bit scrambled because of them, so please bare with me…

I think a simple answer I could give is that I’m autistic, and my way of researching and learning is deeply ingrained in my special interest of my own art and disability experiences. But this is most likely not the only reason…

I’m hyperempathetic both due to my ASD but also due to extreme and severe abuse that I’ve had to endure. It’s changed the way my brain functions, the chemicals in my brain, and it’s damaged in ways I can’t even explain properly without 5 different medical journals to help. Anyway, my hyperempathy, while extremely damaging and hard to live with, also makes me focus on details I most likely wouldn’t pay attention to without it.

Things like: “What’s Daily Life like for this person? When Did their Disability start, From birth or later in life? How do the people around them treat them? How did their parents learn and help with the disorder? Does their disability affect their mental health? How is healthcare where they live? Are they able to have a support system? Are they in daily pain? What medications might someone need to be on for (disability)? What are the side effects?” And so on, etc.

Do you know the Wikipedia Page game? The one in which you have to find a certain Wikipedia page without searching for it specifically, and inside sifting through pages and clicking on links relating to it? My research is kind of like that… I go through medical articles, journals, links, etc and if that has links to another disability, I click, I learn, I do it again, and again and again. After you do it for a couple of years, you’ll find that it’s all very easily connected and how certain things relate to each other.

And well, Lastly, I always have been around Other disabled people. My family is one big genetic mess that has a lot of people with disabilities and disorders. One of my cousins is one of 3 people in the entire world to be recorded with a specific gene mutation. My other Cousin had open heart surgery at age 3. I learned a lot just by being around other disabled people, I think.

I can’t tell you how to research, since what works for me might not work for you, but I hope this helps you anyway.

[vorenado-m]

happy disability pride month! please consider helping me take back my life as a disabled person!

the TL;DR is that for the last 3 months i have had an absolutely soul-sucking miserable minimum wage retail job that, due to the way scheduling works (and the app being broken as fuck) has prevented me from having access to literally any of the life-saving mental health/medical care i need as a disabled person.

my disability is best managed through a combination of medication, therapy, and casework-- not a single one of which i have had since march! :) contextually, up until i got this job, i took three daily medications and had casework once a week and therapy once or sometimes twice a week. these services are offered at an affordable cost to me through a local organization that is threatening to close my case due to lack of participation.

ill make another, more detailed post later with some of the services i can offer for money (i draw! i code! i write!) but until then here is a code you can scan if you have a few dollars to spare:

there are more details beneath the cut (idk about you guys but im kinda nosy so i wrote some more stuff in case anyone else is also nosy) but thats the gist of it. you can also always ask for details. i dont have a therapist right now so it might feel good to say things.

my plan is as follows: i would like to take the month of july more or less "off" from work to get my affairs in order, starting with scheduling appointments for therapy and casework and getting back on my meds. i am actively looking for a job, but i would like the ability to be somewhat picky instead of applying everywhere i think might have me for the sake of having money coming in to pay rent.

for the last two years i have made less than $800/mo and i can survive on roughly $600-$650 a month. my july rent ($550) is paid and my august rent (at least $500) is most likely also squared away, through a combination of some cash i was hoarding, a previous donation, my last expected paychecks from my current job, and my brother generously offering to cover whatever is left over. the extra $100ish is for roughly a months supply of the food that is part of my daily routine that i get cranky without (i have tea every morning, for instance.)

i have a fantastic roommate who is not struggling as much financially who will do everything in her power to make sure i have access to staple foods (rice, eggs, etc) so i really just need to buy the things only i consume (kimchi, milk, etc.) there is a food bank i go to, so i am not worried about food, but i can only go to it once per month. we have a barter system where i trade her the things i dont want from the food bank and she buys me things i will eat; alternatively, i sometimes give her things i get from the food bank (eg meat) that she turns into meals for both of us.

i live independently/"alone" with roommates and do not have support from my family pretty much at all. they have never been particularly useful for emotional support and have openly denied me financial support since i was a teenager. moving in with them/getting help from them/talking to them is not an option.

i have emailed my caseworker at the mental health organization i work with as well as my caseworker with the disability vocational program i work with to help me find a new job that is "back of house" and requires less customer interaction. i did this over the weekend, so i expect to hear back from them sometime this week. in the meantime, i am searching for jobs on my own in places like indeed, jobhat, careerbuilder, etc. as well as checking company websites of places like chain grocery stores to see what is available in my area.

my job pool is a bit limited due to the fact that i cannot drive (due to both my disability and the medication im supposed to be taking for it) but i am very well-versed at taking the bus, which is free. getting to and from work is not a concern for me; it is being able to do the job without being driven to the edge of a mental breakdown that is the problem.

the disability vocational program is my ticket out of poverty! last month i had a follow-up evaluation (i had to call out of work for it, but frankly i was at the end of my rope then too) where they approved my career goals as a web developer and we are in the process of deciding what my next steps are! the program will likely (depending on what route i take) help pay for vocational training, too, but i obviously have to pay rent while in training. which i think i can do if i have a job that doesnt make me want to die.

i have some other things that make my life a bit harder (im mixed race, i am nonbinary + gay, etc) but i would say those things dont really impact my ability to get a job as much as the disability does LOL which is why i did not feature them prominently in this post. like, the reason i cant get a job isnt because people dont want to hire me because i have blue hair and pronouns, its because im obviously disabled.

if you have any other questions, no matter how intrusive you think they might be, feel free to send a DM or an ask, and i will try to answer.

[critterchitters-closedcaptions]

Hi, this is gona be a long ass post and im on mobile, so hang with me.

first, ill cut right to the chase

Im currently unemployed and need money to exist in this capitalist hellscape.

so, since thats my current predicament, ill be taking commissions!

here are some examples of things ive done and my prices

ill take payment through paypal, though im willing to work with other payment options as well!

The body prices are per-character, the other prices are per-piece (example: a flat colored sketch of two headshots would be 12$, 5 per character head, and 2 for the color), and im able to do lineart or lineless - though i dont have any good examples at the moment with lineart - and the prices will only vary if the design is super complex or hard to do, and theyre able to be changed a bit to work with your budget

I will draw

anything for your blog! (example: the pokemon images above, a header, an icon, etc!)

gore! (dm me if you want to see examples)

full scenes (with backgrounds and all!)

characters from pre-existing media (scp, homestuck, pokemon, etc!)

ocs, adopts, ideas, you name it! human, furry, and any other is alright with me.

plain background scenes with no characters in them are things i can do too!

minor nudity

things i Wont draw

hate speech

sexually explicit scenes (due to a lack of practice)

transphobia/racism/n*zi imagery, general nastiness like that

im also willing to design characters for you, and i can provide prices and examples of designs ive made upon request.

please dm me here or on discord @ [CC&CC]#8992 to contact me about any of this!

thank you for reading this far! ill also be reblogging this to my side accounts to try and get a few more eyes on this.

below is a little bit of info about me so you can decide if you want to Give Me Your Money or not ^^

im a genderqueer and overall queer trans man whose just moved out from my parents home and am living with my best friend of nearly 10 years. ive got a snake, salamander, and two bug colonies, i love pretty much all animals, and am an amateur songwriter/musician! im disabled in multiple ways (but that just makes me cooler 😎) and i deal with some pretty prominent mental issues which make being regular to a job without my health getting in the way pretty difficult. also part of a did system, which is. So Cool and Epic

im looking for a proper job, but its not been going too well for me thusfar, largely because places ive applied have found more fitting people to fill the roles. and thats ok! i just need some way to make money in order to buy groceries and Supplies for My Boys and generally. live, lol! i also want to take some burden off of my roomates shoulders, considering hes been doing wonders to help support me, but im not really able to provide much in return. job places are also a bit hesitant to hire me considering my aforementioned health issues.

anyway, sorry for the rambling and thank you for reading this far! i hope you can consider supporting me, but if not maybe a quick reblog to spread this around would be great! thank you so very much and have a wonderful day!!

[spoonsforminutes]

Medical Ableism

As someone who has extensive personal experience with medical ableism from both physical and mental health professions, I wish more people realized that ableism (and really all -ism ideologies) are a systemic issue reflected in individuals and has no real inherent bearing on morality. What makes medical ableism so vile is the fact that the U.S. is a country in which people refuse to confront the uncomfortable beliefs of the past and present, and the fact that people confuse personal ego and professional knowledge as the same thing. Specifically more so in therapy, it is a therapist’s responsibility to mitigate conversations with their clients in a safe and beneficial way that addresses their concerns, and although seen more in good therapists, medical professionals should feel encouraged to discuss personal examples of trauma without trying to control the client’s own narrative. I don’t know why this is so hard for medical professionals because when someone is trusting their life in your hands, my own opinions always come second place to validated research. Plus I don’t know, my personal trauma failed to develop and secure a personal identity for myself, but I have always spent my time learning about and expanding my own worldview. And it’s super funny going through medical healthcare courses in college as someone with an invisible disability because you really learn that no matter who are--either an old white guy retired from his medical career or a woman in cancer remission trying to teach young med professionals that patients need to have compassion for their illness--you find out pretty quickly that the U.S. healthcare system only sees fatal/terminal illnesses, temporary illness/conditions in which full recovery is expected, or mental health (only addressed by mental health professionals).

Neuroscience and cognitive science truly is such a good major to have when heading into medical school because it’s the best of both worlds in terms of psychology and biology with the added bonus to explore linguistics, computation, and philosophy. I am incredibly privileged to have gotten such an education and to use it to really expand all aspects of my understanding. I specifically perform research on my own disability and gender identity, so I’m already on this battlefield. I am in the trenches, but even more so, I see the people who face the same struggles as me, and I think, “well, im used to pain and trauma; let me step in front and take the first bullet.” I don’t think true social activism is ever a choice; it feels like I walked head-first down that path, and whenever things get in my way, I double-down on everything I know I am and what I believe. This is where my gender identity really helps because both masculinity and femininity where used against me whenever I stood up for myself, so when people misgender me, it fills me with a little bit of glee because I think “good, go ahead and underestimate me.” It’s very clear that even with top surgery, my trauma-strained voice affirms my assigned sex which is incredibly dysphoric, but I’m working on it for me and my personal happiness. Until then, my voice is no excuse. Transphobia literally lives in the spaces of what is deemed acceptable queerness and the assumptions about its visibility. The traditional sex binary model will always spurn transphobia until society realizes that “male” and “female” sex simply don’t exist and are a heuristic that was never meant to be taken literally, but the history of sexism and racism in medical science has perpetuated this idea that inherent differences exist between people that would support bigots and discrimination. 

I don’t think morality is something that anyone can possess permanently because it relies on both words and actions; you do not just get claim you’re a good person and then do whatever the fuck you want. Being a good person means respecting both yourself and others, and ultimately, wanting to see a future where you and the people who influence your life (whether you know it or not) can live free and happy and SAFE.

[havesomewords]

I took a look and OP is actually right - if you click on the blog directly from the feed in the app, it doesn't show pinned posts at all (or the menu if there is one).

This is how it looks in Android on s23.

I am fairly sure I did see the pinned post in the app before but I need to test it and see if it still is true, because I normally view Tumblrs on Firefox on my phone so everything shows up fine (I recommend that as Chrome lags more and Opera doesn't show all of the newest HTML or CSS. I stopped using Safari but it matched Opera on Android around three years back).

I'll update after looking through the app. It might have been the update that removed Tumblr Live that killed the pinned posts but unsure.

Update: Nope, I can't see any pinned posts on blogs other than mine on any of their pages. So, it really is buggerred but someone has to test other systems as maybe it works fine on iPhones or Windows phones (do people still have these?).

Update 2: It gets weirder. I can see the pinned posts of people if I click on their accounts under the like section but not in any other way. That must be related to how Tumblr sorts posts on the app, which is horrid and you generally get the most recent post of a blog and then their top posts if you choose an account from your feed, IMs, Reblogs (those make sense) or Comments. Likes might be where it sorts in a chronological order while adding the pinned one on top (because it axes top posts?). I don't know the code of the app or enough about code at all to decipher it.

FINAL UPDATE: I found the solution! When you go to any blog on the app - refresh it by doing a 'tugging down' motion and the pinned post appears afterwards. I never suspected it could be so simple.

[ to answer the other bit on mental health ]

OP, I doubt you want to disappear, because it sounds like you want to be understood and are having a horrid phase (well, a phase can be really long and my word choices suck) which makes everything seem dark as hell.

It would be a truism to say everything passes and we learn to deal with pain as we go because it is bullshite for some. I nor anyone else know what you went through or how it resonates with you now. It sucks to deal with it alone and without anyone or anything to relate to.

Still, people are as nuanced and as weird as anybody - some just vary less or in a different way but I promise you that there's plenty similar to you and I'm not saying it without empirical evidence, because in my short life, I met loads and loads and loads of fiction-affiliated folks (no clue how some would identify and back then I lived in Poland that just discovered the term 'otherkin' while EU started using 'fictionkin' to mean a singlet that was similar to a 'fictive'). There were quite a few mental health specialists too but those were mainly plural systems.

We all go through life differently and we favour different things plus it depends on your environment in how open can you be or want to be. People often misbelieve me when I say that I never got shit for being a very loud and over-sharey fictive (well, I was more of 'loud about being reincarnated', as my source is very recent, and being a part of a system) but I never had. Hell, a lot of my peers were similar and we had no clue why or how as we had no internet and nobody considered it an issue. I did get into some arguments for being aggressive about physical disability and mental health accommodations or discrimination because I am ginger and mean.

It could be that your area is crap and lacks any specialists that would suit you or any that would be safe for you. It could be that there is nobody like you anywhere near or maybe anywhere at all as I am writing this because I am in a similar depressive episode but it just sounds similar to me based on this one post. Living with a great number of past/present issues or traumas is never easy and we all process it differently, so you might want a break and that's logical - we all should spoil ourselves but human brains are generally the worst critics of themselves, so try to go easy on yourself. Don't leave forever as your presence will be missed - hell, I don't know you and I'd miss you purely because I can.

As a really odd note: Writing tone can be hard to discern and I assume that is why you read the mod as coming off as mean. Dunno why but it is a common issue nowadays as I saw it recently - could be because people found a way to talk about it or maybe our areas just started to be more diverse about this. Most folks are probably neutral at most times and this is how I read any mod - I used to mod stuff too a long time ago :|

I have no one in real life who would and could understand, or talk to. It's impossible to explain the kin and fictive connection to my pain, to people or doctors without being sent away. I'm a mobile user who doesn't and can't have access to your rules unless they're pinned to the blog. It doesn't matter anymore, though. Your open meanness has made me certain in needing to permanently disappear, so thank you for being my final reason. Don't post my asks, I want to completely disappear.

Can I get some context, keywords, custom tags or signoffs, or names to go with this message? I'm confused? Which confessions in the inbox or queue do you want deleted?

also the tag #blogpages has all the blog pages as text post, for mobile users, like it says in the blog description! I think think not having them pinned is not mean at all? Like, that is what we had to do before tumblr ever had pinned posts!

mod party cat!

[slutdge]

🐞

[teaboot]

hi i hope its okay to ask about your career? i'm on a crossroads in my life and one of the paths im interested in is fashion but im just so... torn? and i don't think many ppl take it seriously, like, as sth you do in life unles you profit really well... my family certainly doesn't see it as an option an im just very curious about your experience w/ studying and working in the industry

Honestly? I never in my life expected going to college for fashion. He'll, I spent half my childhood topless and barefoot in jean overalls, covered in dirt with a snake in each hand. My best friend from grades 4 through 7 was a sheep. I brought that sheep to a school dance. Seriously, fancy clothing was never for an instant a topic in my mind.

I always figured it was sort of shallow, you know? Fashion was for dumb rich people who paid too much for shoes you couldn't even hike in.

What I DID love, however, was Costume Design. All the cool outfits and armour and prosthetic bits in The Dark Crystal, and Star Wars, and Lord Of The Rings. And the practical effects! Ohhh I could go on. I loved it. I wanted to help create that magic.

And to be a Costume Designer, I had to go to school for Fashion Design.

And I will tell you right now: if someone is in a fashion design course? Good for you. It's hard work. But if you've GRADUATED your fashion design course?

Ho-lee-fuck. You have my immediate respect.

Getting a fashion design degree is a four year commitment, usually. Because I'm an idiot, I decided to finish it in two. And I did! But out of... I believe a starting class of 15-20? Only four of us graduated.

To highlight the worst of it? My family is poor. Pretty much all my classmates were either ludicrously wealthy or at least well-off. I had duct tape holding my sneakers together, and I worked on group projects with people wearing Louis Vuitton who had maids back home. They were nice enough, but the cultural disconnect was more jarring than I'd expected.

And the actual class work is hard. The people coming in with fantasies of becoming the next Kim K with little to no real physical labour or skill involved dropped out pretty quickly.

See, knowing how to draw was part of it, but the whole spectrum of classes involved Fashion History, Color Theory (Which is an ENTIRE course on just colors!), Life drawing, Digital illustration (for both factory instructions AND fashion images), Fashion illustration, Concept design and development, GERBER training (The only digitizing program for making patterns, apparently, which is garbage and makes me cry), Patternmaking, Trends (And how to predict/utilize them), Advertising, Basic web design, textile sciences (where we learned how to make fabric, design fabric, and analyze various materials and weaving/knitting techniques), and then the ACTUAL design and construction classes, where we finally got to learn how to use industrial machines and do a million sample pieces to cover sewing and ironing techniques before moving onto designing and sewing our own ideas.

If it sounds overwhelming, good. It IS overwhelming. I can't speak for others, but my mental and physical health both tanked. I worked 20 hour days and spent weeks at a time on campus without going home, mostly because I couldn't afford the train. If you have the opportunity to use the full four years, DO NOT RUSH LIKE I DID. It will CONSUME YOU. There were so many days where I woke up in a bathtub or under a table and thought, 'I made a mistake. I can't do this. I'm an idiot, I should quit, my life is hell.'

Really, I think the only reason I didn't because the only thing I am more than dumb is stubborn, and I have amazing friends and family who I could call and talk openly to, and I'd already flushed enough money down the campus toilet that quitting now with nothing to show for it would have been a move of eternal regret.

...BUT- and I must insist, BUT- I LEARNED SO MUCH. I had hardass teachers who made me cry, I learned about a system of corporate corruption and greed that starts with a seed and ends in farmers shooting themselves in the field and mothers losing children in villages across the world and the $3 dress you buy off the rack and the laws that make it possible. I learned that there are ways to Fuck that system, and I learned how to change that system. I learned where the problems are. I learned where the lies and misconceptions are. I learned about disability and ableism, fat shaming, diet culture, ageism, social hierarchy, revolution, historical trends that keep coming back and ideas so appealing that they didn't stop until people end up dead.

It's fascinating. It changes your worldview and the way you think. People need to know that fashion isn't just clothing- its everything from the way you hold your body to the food you eat, the color of your skin and hair, your wedding ring, your dog, your living room wall. It encompasses EVERYTHING, and I love that.

That being said, I graduated tired and hungry and went off to work a desk job just to breathe a little for about a year. Then I made fashion flats for factory production for a while, because the pay is good and I know how.

And I have so many opportunities open to me, now. I could work in a high-end boutique. I could be a patternmaker for wedding gowns, prom dresses, suits, costumes, bathing suits. I can and HAVE worked backstage in fashion shows. I can be a tailor, a costume designer, a stylist, a personal shopper, a curator- there are so many directions I can go from here, and for a while I even did small clothing adjustments for people to help ends meet.

It's a collection of skills I will always have that I can always use, no matter my social standing. I could lose my house, my family, my job, my mobility, but so long as I can communicate or hold a pencil I will have a valuable skill.

I'm in the process of applying for the IATSE film union, to be a costume designer. It's been four years since I started. I'm nervous, and excited, and anxious, but worst case scenario I can't get a foot in the door? I can make clothes for my children. I can tailor my own suits. I can do repairs for friends and neighbors. I can go to a store, look around, and say, "That's a bad deal. That's a bad investment. I can get good value out of this instead", and that's good, too.

At the end of the day, though, you know the most important thing I've learned?

My job is not my life. My job is what SUPPORTS my life. Having a job I love would be nice, but it's still only secondary.

Sorry, I ramble. Hope I could help!

[dxmedstudent]

Hi dx, I'm starting med school this fall and moving to Ireland to do so! Ive got chronic fatigue though and Im worried about being able to manage the workload. Im on meds so I'm doing pretty well, working 10 hour days rn with a 2 hour commute, but im pretty drained at the end of it. Have you or any of your followers got any suggestions for handling med school when youre just so tired all the time?

And another ask:Hi, following on from the anon asking about studying, do you have any specific tips for studying medicine with chronic fatigue? I find sitting in lectures (and the journey to and from) drains me even more than I am usually. Thanks and have a great day!            Hey, peeps! So I have someone important in my life who has gone through a chronic fatigue condition in med school. I’ve seen a lot through what they went through, but I wanted to be able to give a more useful answer. I took a little time to think, and to ask them what advice they would give.  They gave me permission to share an edited version with you.

It is possible to get through medical school with chronic health problems. Don’t let other people tell you otherwise. You may encounter people who doubt you, but never let them get to you. Remember that many people with chronic illness have achieved great things and it doesn’t have to be a barrier to  success. 

There is usually a way to get through whatever obstacle comes up. The key is to take everything literally one day at a time, and do not get overwhelmed by thinking about all the demands for the year at once. Focus on what needs to be done right now. Next week is another     week. 

Let  yourself have setbacks, and don’t give up when you have worse periods of health. There will be times when you’re more tired and stressed, but you have to give yourself space to recover back from that. Remember that everyone, whatever their health status, has bad times, and that usually they will pass. If things aren’t getting better, talk to your family, friends, personal tutor at university.  Seek help with clincians.

Keep in touch with your fatigue clinicians and be open about new obstacles and your fears about things. They can help with a lot of problem-solving aspects and support you during times of difficulty. They are also useful to rant to when you are stressed out as they know a lot about the problems of people with CFS who they’ve seen in clinical practice. 

Consider reading books on CBT and acceptance commitment therapy (ACT) - these have really helped me through psychologically difficult situations and build resilience when medical school has thrown difficult things at me. In the hardest year of medical school it really helped to have written advice to look at when various situations came up. 

Tell the university (occupational health, senior tutor, personal tutor etc.) - I cannot stress this enough. It is confidential, and they have to   accommodate you because it is a disability. This can become really important if you have issues completing sign-offs/assignments on time, getting hospital placements closer to home, getting extra time in exams etc. It can also be useful if you have problems with exams (not being well enough to do a sitting) for the university to know what is going on and how best they can help you. If they do not know what is going on, then they cannot help you. This is one of the best things I did at medical school in terms of having a safety net for when things were more difficult. 

Do not feel you have to attend 100% of everything. If you are feeling very   fatigued and not gaining much by that point in the day, it is usually     better to go home and do some quality studying at home. So many students who have no health problems will go home early, so do not feel guilty for doing so when you feel fatigued and like you’re not having a good day. Just remember to catch up what you’ve missed. 

Talk to the students in the year above about what the demands of the coming year are like, what the exams are like, what textbooks/resources to use,  and other *off the record* tips which the university would never tell you. This will help you out in planning how to approach the work for that year. It is very important to know what you’re preparing for and the best way in which to do it. 

On placement, talk to the teaching fellow/head of the placement if you have any issues completing tasks or sign-offs etc. They can help you and give you advice about how to get things done. This has been of great comfort to me during placements where sign-offs have been very tricky and I’ve worried about whether or not I will complete everything. Also ask how previous students did it - you’re not the first cohort who’s gone through the system. 

Let yourself adjust the intensity of your concentration when attending     lectures/seminars. Some days you’ll be able to be at your highest level of     functioning, and other days you may feel less functional.  Your levels might look something like:

Highest  level: concentrate/listen, participate/answer questions, write down notes.

Medium: concentrate/listen, no writing or participating.

Low: zoning out some of the time (5 mins etc), prioritising more important slides or mentally checking in again when possible. 

Use breaks during lecture days to really give yourself a breather. It is best to physically leave the space where the lecture took place, ideally go to a canteen and have a snack (food and drink are very important for boosts), or go outside (fresh air is important). Let your brain truly wonder and do  something not related to university or teaching. Don’t hang around with peers unless they talk about things which are less brain intensive or   non-university topics. 

Take on a reasonable workload during group assignments, and don’t let other students foist extra work or their work on you. Be strict about your role and that you will not do their work for them. 

E-books (textbooks) - either download pdfs and upload on google drive etc. or buy on kindle etc. This is VERY useful for reading and studying whilst out and  about for medical school, and fitting in revision during parts of the day which are empty/less busy. There are often quite a few times where you will be waiting around between teaching/clinics/hospital activities and if you use your time wisely you can really get a lot done. You can also read on public transport when commuting which is a good use of that time too.This becomes especially important close to exams where time management is key. This is one of the best things I did. 

Pacing - plan for deadlines in advance. If you have sign offs/essays/histories to do, space them out and plan everything in advance. Make a plan and stick to it, but be flexible enough to change things around if you don’t feel up to doing a particular task on that day. Make sure it is realistic personal timetable, and has time for you to attend university, study and complete assignments/sign-offs, as well as relaxation/social time.

 If you feel you are doing too much, cut back and do the bare minimum of what you need to do. Whilst it is nice to aim high and everyone at medical school is crazy competitive, the aim is to pass and go into the next year, and complete the degree. Scraping passes = still a doctor. Many people forget this, but the priority is to get by and become a competent doctor. You are doing what you can do, and you don’t need to get a Distinction in all your exams to be a good doctor. 

Do  not feel guilty for not being able to work as hard necessarily as other   students can all the time. Be proud of yourself for being there and for     doing something so difficult as medical school in the first place. Medical     school is very hard even for people who do not have any problems with     their health. There is really nothing wrong with coasting along and doing    just what needs to be done. It can be frustrating to not be able to do     more, but tell yourself that you’ve done your 100% which is all you can     give at this current time. Sometimes you’ll be able to do more, and     sometimes you’ll be able to do less. But don’t feel guilty about it. Know     that you are doing your best and that’s all that you can do. 

Similarly, everyone feels they are not doing enough/like they don’t know enough. Doctors on placements will also occasionally have a go at you, not  realising that actually for your level you do know enough. You may feel you like you’re not enough, but the truth is that everyone feels like     that. Many people at med school act like everything’s fine but underneath  the surface, we’re all working very hard and tired. 

You     are not alone - many people at med school have either physical or mental     health problems. They are all also battling through the challenges and you     are not alone in your difficulties. Remind yourself of that and know that     everyone is on their own journey/battle. 

Believe in the work-life balance Pie chart - Everyone should ideally have equal time in their day dedicated to 1/3  cognitive, 1/3 self care and 1/3 social activity. In med school, the latter two may fall back a bit even for students with no health problems, but it is very important for these things to be done consistently during med school. “If you can’t look after yourself, you won’t be able to look after other people”. The only way you can achieve your goals and look after patients etc is by looking after yourself (with the pie chart) and keeping yourself in the best health possible. 

Cognitive:studying, reading, academic extracurriculars, any activity where the mind is actively involved. 

Self care: pampering yourself, hobbies, leisure activities, exercise/yoga,     playing with pets, praying/worship etc. 

Social: going out with family or friends. Relationships. Support groups.     Societies/clubs etc. 

Join  support groups either in real life or on Facebook - it is really useful to have somewhere to rant about issues which specifically affect people with  CFS/ME, and to have their support when you have a hard day. Family and friends will not always understand everything you’re going through, even with the best of intentions, so it’s important to have peers with CFS/ME on those occasions. 

Don’t be afraid to turn down going out or doing extra things in the day if     you’re really not up to it. Better to keep yourself at a functioning level     than overdoing it because you feel you *should* be doing something. It’s    best to be honest with yourself about what you can do today. 

Learn to say no - if other people ask you to do things and you are feeling   overwhelmed at the time from work/personal life, do not feel bad about     saying no if you have reached your limit of how much you can cope. Do not  feel guilty about this, and realise that it is crucial to not take on too     much at once, in looking after your health for your ability to get through     medical school. People can and will ask you to do things either not     realising that it’s over your coping limits or not caring. You have to learn to put yourself first and forward and know your limits - it is not worth the payback which can inevitably happen when we overdo our limits.     Medical school does not give you a lot of time to rest or recover, so you     really have to make sure you keep yourself functional and within your     limits. 

Work  steadily during the year - if you have fatigue then you cannot leave   things last minute and cope with the physical and mental stress of this.     Make sure you are making notes and keeping up during the year, and     increase your revision before exams to a comfortable level. Be careful not  to overdo it in terms of number it hours a day, as most likely you will     lose your concentration and not absorb the information anyway. Best to do revision in chunks, with breaks and other things to break up the day. If the next day you get payback, it’s a sign to dial back the number of hours of revision. Even if you’re doing less hours of revision than you planned, if you’re better focused and rested you will pick up more information.     “Quality not quantity”. 

I hope this helps! Good luck with your studies, and I hope that things go well for you in the coming year.

[elipinski]

INTEGRATING CARE

Introduction

Image from SouthEast LHIN

I chose this blog topic because it closely aligns with my current work on the Health Links model of care project. The Health Links model of care is a key commitment of the Ministry of Health and Long-Term Care in integrating care for patients with complex health conditions such as those living with mental health and/or addictions and people who are frail (Ministry of Health and Long-Term Care Ontario, 2015). Health Links is also the foundation of the People’s Health Care Act; Bill 74 passed earlier this year. The purpose of this legislation is to guide the creation of Ontario Health Teams with the mandate of delivering integrated and coordinated services across health and social service sectors (The People’s Health Care Act, 2019). In delivering Health Links model of care, social and health service providers are required to use a Coordinated Care Plan (CCP) (Click on link to see the CCP). The CCP is a communication tool for patients, their families/caregivers, and providers with the focus on what is most important to the client/patient. The information obtained to complete the CCP is inclusive of physical health, mental health and addictions, assessing physical, psychological, social and spiritual supports (“Coordinated Care Plan User Guide Version 2.1,” 2018)

Bill 74, The People's Health Care Act, 2019

https://www.ola.org/en/legislative-business/bills/parliament-42/session-1/bill-74 

As an occupational therapist working in Ontario, I am very interested in seeing what changes will take place in our healthcare system and how this will impact service delivery particularly for seniors with normal and abnormal mental health. Here is hoping that the new changes to the healthcare system will address some of the barriers experienced by seniors with mental health issues such as difficulty finding appropriate mental health providers, long wait lists, difficulty with transportation and mental health stigma (Segal et al., 2018).

In this blog I will be exploring various issues that impact adults with normal and abnormal mental health as they navigate the health care system. 

References

Bill 74, The People’s Health Care Act. (2019). 42nd Legislature, 1st session. Retrieved from Legislative Assembly of Ontario website: https://www.ola.org/sites/default/files/node-files/bill/document/pdf/2019/2019-04/b074ra_e.pdf

Cordinated Care Plan User Guide Version 2.1. (2018). Retrieved from Health Quatlity Ontario website: https://www.hqontario.ca/Portals/0/documents/qi/health-links/ccm-coordinated-care-plan-user-guide-v2.1-en.pdf

Segal, D. L., Qualls, S. H., & Smyer, M. A. (2018). Aging and Mental Health (3rd ed.).

What is integrated care?

Image from Better Health Together. Western Sydney Integrated Care Program

Integrated care refers to bringing together inputs, delivery, management and organization of services as a way to improve access and quality of services, improve efficiency and patient satisfaction. (Plochg, Ilinca, & Noordegraaf, 2017). When looking at our current health system, health issues are being managed in a disconnected and fragmented way where there is no coordination of services across providers, settings or in the timing of the care that is provided (de Carvalho et al., 2017). This makes it difficult for patients who want to access services to know where to go and if they are accessing different services many times they have to repeat their health history due to a disjointed system. The Ontario provincial government has been exploring ways to improve health care in the province and one of the ways they have been looking to do that is through the integration of the healthcare system. The goal of integrated healthcare models is to connect health and social systems to improve the coordination of services across the different sectors and enhance patient and caregiver experience (Kirst et al., 2017).

The population in Canada is increasingly aging and the care needs of aging adults will increase exponentially. As people age and experience normal mental health decline, they become more vulnerable for getting more serious mental health illnesses and living with more complex and interrelated mental, physical and social health issues (Salinda, n.d.). The complicated interactions of physical and mental health for older adults which need close supervision of a patient’s physical well-being require collaboration among providers. (Segal, Qualls, & Smyer, 2018). There is a need to have a healthcare system that is responsive to these needs and not treat them separately. In an integrated system an individual experiencing physical, mental and social change would have their services coordinated and connected across sectors. Evidence suggest that for patients with chronic and combined physical and mental health conditions, care that is integrated leads to better results and is more cost efficient (Oldham, 2013).

References

de Carvalho, I. A., Epping-Jordan, J. A., Pot, A. M., Kelley, E., Toro, N., Thiyagarajan, J. A., & Beard, J. R. (2017). Organizing integrated health-care services to meet older people’s needs. Bulletin of the World Health Organization. https://doi.org/10.2471/BLT.16.187617

Kirst, M., Im, J., Burns, T., Baker, G. R., Goldhar, J., O’Campo, P., … Wodchis, W. P. (2017). What works in implementation of integrated care programs for older adults with complex needs? A realist review. International Journal for Quality in Health Care. https://doi.org/10.1093/intqhc/mzx095

Oldham, J. (2013). Integrated care. Journal of Psychiatric Practice. https://doi.org/10.1177/146245679900300305

Plochg, T., Ilinca, S., & Noordegraaf, M. (2017). Beyond integrated care. Journal of Health Services Research and Policy. https://doi.org/10.1177/1355819617697998

Salinda, H (n.d.). AGHE 821. Module 1: Mental Health & Aging: Aging well [PowerPoint presentation] Retrieved from Queen’s University website: https://onq.queensu.ca/d2l/le/content/321165/viewContent/1968574/View

Segal, D. L., Qualls, S. H., & Smyer, M. A. (2018). Aging and Mental Health (3rd ed.).

Bringing health and social services together

Medical and mental health and addiction systems exist in separate silos, making it difficult for patients to navigate (Sebastian, 2017). As previously mentioned, our current health system is mostly fragmented; with patients having to visit different providers related to either their mental health, social or medical needs. There is always an attempt to address all these three areas of need separately but we have to recognize that unless one’s basic needs are met, good overall health is hard to achieve (Sebastian, 2017). The lack of co-ordination and the lack of a holistic approach within health and social care for older persons result in unsatisfactory care (Gustafsson, Kristensson, Holst, Willman, & Bohman, 2013). These patients often struggle with knowing whom to call when they need non-emergent help and any information provided to them could be overwhelming.

Tom Sebastian talking about Integrated care: connecting medical and behavioral care

Is a case management model the answer? A case management model is a way of intervening in a fragmented health system with the aim of improving the coordination of different services, such as health and social care (Gustafsson et al., 2013). It has been suggested that medical and behavioral health care providers should work closely with social service providers to develop comprehensive care plans (Sebastian, 2017) and to improve continuity of care (Gustafsson et al., 2013). A case management system could work especially well for those patients who are having difficulty with their memories, by having one-point person to help them navigate the health and social systems.

References

Gustafsson, M., Kristensson, J., Holst, G., Willman, A., & Bohman, D. (2013). Case managers for older persons with multi-morbidity and their everyday work - A focused ethnography. BMC Health Services Research.https://doi.org/10.1186/1472-6963-13-496

Sebastian, T. (2017, December). Integrated care: Connecting medical and behavioral care [Video file]. Retrieved from: https://www.youtube.com/watch?v=0lzmaBpBEag&t=19s

An Integrated care model: Mental health and primary care

Mental health disorders account for about a quarter of all health related disabilities in the world and more patients get treatment for mental illness in primary care than in a mental health specially setting (Kroenke & Unutzer, 2017). In Ontario in order to access psychiatry services, you have to be admitted in an inpatient setting or get a referral from your primary care physician to a psychiatrist and wait times can be long for what are considered non-urgent cases. Primary care providers and mental health and addictions (MH&A) providers have been taking steps to collaborate and integrate care either within a single service or within a team where they share care planning and decision making, have a common medical record (Kates et al., 2011). Collaborative care models involve mental MH&A providers working with primary care while an integrated care model involves MH&A workers working within and as part of primary care and patients perceive it as a routine part of their health (Kroenke & Unutzer, 2017).

An example of this type of integrated care model has been established by the Hamilton Family Health Team Mental Health Program (HFHT-MHP) where mental health providers have been integrated into over 81 offices of 150 family physicians where the focus is on providing ready access mental health care in a place that is convenient and easy to access for patients with mental health issues (Kates, McPherson-Doe, & George, 2011). Some of the benefits of the program have been, reduced wait times for first assessment, access to MH&A for adults over age of 65 who would otherwise experience lengthy wait times, early detection and treatment of MH&A problems, communication and coordination of care among providers (ibid). Integrated and collaborative models of care have the potential of improving access to care and enhancing the experience of older adults, which is one of the goals of The People’s HealthCare Act, 2019. This type of model has the opportunity of engaging models of mental health care that are not just bio-medical and focused on medication for intervention, but also psychodynamic, cognitive-behavioral, stress and coping and family systems models by including other health professionals such as psychotherapists, social workers and psychologists.

References

Kates, N., Mazowita, G., Lemire, F., Jayabarathan, A., Bland, R., Selby, P., ... & Audet, D. (2011). The evolution of collaborative mental health care in Canada: A shared vision for the future. Canadian Journal of Psychiatry, 56(5), I1.

Kates, N., McPherson-Doe, C., & George, L. (2011). Integrating mental health services within primary care settings: The hamilton family health team. Journal of Ambulatory Care Management. https://doi.org/10.1097/JAC.0b013e31820f6435

Kroenke, K., & Unutzer, J. (2017). Closing the False Divide: Sustainable Approaches to Integrating Mental Health Services into Primary Care. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-016-3967-9 

[cyanpeacock]

man im so fucking angry I'm shaking

somebody I trusted a lot really ripped into me the other day and accused me of lying about my life and mental health. they even had the nerve to bring my PIP claim into it saying "it can't be that corrupt, my application got fast tracked with no evidence!!"

well... a) that person is in the system already under a designation that i don't have that means they often recieve priority attention and more help, and b) that person is not getting any fucking PIP money either. they haven't even been to the assessment appointment. how about you SHUT UP until you've been through the whole process and actually got cash coming into your bank account? yes, it's piss easy to send off a fucking form, what's HARD is being listened to and taken seriously by the pos assessor and the DWP!! there are people out there who can't fucking WALK having their motability scooters and cars taken off them because they can hobble 50m with a cane, and that's with a disability that is immediately visible. do not fucking start on me.

like if they do get their PIP first time, fucking great! that's how it should be! but it only takes a fucking google to find stories of people with LITERAL CANCER being denied disability payments in this country, never mind the attitude within the system towards mental health. this week I've seen MULTIPLE headlines about universal credit forcing women into sex work. the UK benefit system is fucking broken. and how the fuck can you think you have any authority to say that kind of shit without having been through the whole process first?

i just can't fucking believe what they said to me. i'm so fucking hurt and upset that my head is just swimming. i know i'm fucking lucky to have the support already I do, but that's because I put the fucking work in, went out there, and got it. just because i'm drowning in less water than somebody else did doesn't mean i'm going to stay under the fucking water when i see a fucking life ring nearby, i'm going to use all the strength i have left to kick off for that shit. this isn't a fucking game with a cutoff for a winning score in Trauma™. i'm not about to force myself into a job just because somebody else is working harder than is healthy when i've been given a fucking MEDICAL LEAVE from university, in order to get my shit together, so that i can go back and hopefully build a new and actually sustainable life for myself for the next 70 or so years I have. we all look fucking different and different things fucking hurt us. you can't use your experience as the Only True Benchmark for Suffering, and you CANNOT tell another person what they have and haven't lived through. that's fucking absurd.

in a way I'm not even surprised. this same person cut off another friend of theirs not that long ago, really fucking viciously, accusing them of lying too with no indisputable evidence. i was kinda sus about that, did my best to trust her bc they knew that person better than i did, but from then i've had "am I next?" in the back of my mind. i guess this resolves that question.

i'm ESPECIALLY pissed because they ripped into me in ways that i KNOW hurt them the most. whether they were in an emotional state or not that was fucking intentional, and downright cruel. and it's not just me who thinks that was fucking cruel. it's kind of telling when somebody who's fucking paid to listen to people with problems says you "don't sound like a nice person."

i was fucking looking forward to growing older next to that person and seeing where our lives went, but not any more. some nerve calling me toxic, which i freely admit i can be, when you're fucking blind to the toxicity of your own comments. didn't think for a second "what if somebody said this to me?" i don't need that shit in my life

[paddysnuffles]

yes hello you said you did the reading to your self diagnosis and im gonna ask what did you read bc i think i may be autistic too

Hi! The research I did was really extensive as it was for a major project for my science, technology, and medical information class during my Master’s (Library and Info Science). The project was to make a user-friendly starter guide on a topic of our choice, so here are the resources I ended up using:

Is There Really an Autism Epidemic? (by Hal Arkowitz & Scott O. Lilienfeld, Scientific American, 2012)

The article discusses the possible meanings of the drastic change—within the short span of a decade—from the long-held ratio of 1:2,500 people with ASD to one of 1:166, suggesting that better understanding of ASD (and thus better ability to diagnose it) is likely to account for most of the increase. This is a great educational tool on understanding why autism is reported to be on the rise and why the current data on rising prevalence is rather misleading.

How to Think About the Risk of Autism (by Sam Wang, The New York Times, 2104)

An extensive yet approachable look at what the science says about the causes of autism and how to estimate the chances of a person having ASD. The article offers a comparison between how much emphasis the scientific community puts on each probable cause and how the media covers the subject. Genetic research can often be hard to follow even when simplified, so this could be a valuable introduction to the subject.

Survey: One in five believe vaccine causes autism (by Carly Weeks, The Globe and Mail, 2015)The article shows the effects of 18 years of false information fed to the public as science by Andrew Wakefield, starting with his 1998 paper on how vaccines are to blame for the existence of autism (which has been repeatedly disproven) to the 2016 propaganda film Vaxxed: From Cover-Up to Catastrophe. An important issue with serious public health implications.

Steve Silberman on autism and ‘neurodiversity’ (by Emma Teitel, Maclean’s, 2015)

An interview with Steve Silberman, who delved into the history of ASD to prove that the belief that “autism is a historical aberration of the modern world” is not actually correct. It offers an insightful explanation about what neurodiversity is, and serves as a great companion to the essay Mental Disorder or Neurodiversity? included in the topic-specific list.

Autism spectrum has no clear cut-off point, research suggests (by Nicola Davis, The Guardian, 2016)

This story reports the findings of a study that showed that the genes involved in the genesis of autism are connected to an individual’s social skills regardless of them exhibiting symptoms of ASD, “suggesting that “the autism spectrum has no clear cut-off point.” In other words, all individuals could be put within a scale for autistic traits and placed anywhere between the most severely impaired people on one end and the easy-going, social butterflies on the opposite end. The article provides a biological basis that could inform some of the discussion presented in other articles on the suitability of labelling less severe cases as a “disability” rather than a difference.

Autism spectrum disorders in the DSM-V: Better or worse than the DSM-IV? by Lorna Wing, Judith Gould, and Christopher Gillberg—–An overview of the changes brought by DSM-V by removing the category of Pervasive Developmental Disorders and replacing them with Autism Spectrum Disorder, as well as a discussion about the positive and negative aspects of the new criteria. Considering that the changes brought by the new edition of the DSM is one of the most important developments in the area, this article provides a much-needed discussion on the very definition of ASDs. Note: One of the beliefs professed in the article - that autistics cannot feel empathy - has recently been disproven; for details on that see Brewer & Murphy in the referenced works section)

Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder: A Comprehensive Review by Connie Wong, Samuel L. Odom, et al.—–A look at the current practices for ASD therapy to help children learn coping mechanisms, hone their fine motor function abilities, and other interventions found to be effective through different research projects. This essay will be helpful for an understanding of the therapies and techniques available for families affected by ASD.

Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support? by Elizabeth Hughes—–The article discusses the differences in how ASD presents itself in females versus males, comparing the diagnostic tools available for ASD and doctor’s perceptions of what ASD looks like in order to determine whether more males tend to be diagnosed with ASD than females due to actual biological differences in prevalence or because of gender bias imbued within the diagnostic tools. In addition to addressing an important issue surrounding ASD, this article also helps with the understanding of the range of symptoms and level of severity ASD can be manifested.

The Ever-Changing Social Perception of Autism Spectrum Disorder in the United States by Danielle N. Martin—Providing a historical perspective on the evolution of the understanding and acceptance (or lack thereof) toward ASD from a social and medical standpoint, this article looks at how past perceptions have shaped the modern stigma toward this disorder. This thesis paper—which was awarded the Michael F. Bassman Honors Thesis Award from the East Carolina University—will helps readers to familiarize themselves with how stigma against ASD manifests itself.

A Minority Group by Charlotte Stace—–Slang and terminology related to ASD are explored from the perspective of the ASD community, offering a unique insight into how the community views itself as well as how it views outsiders. It provides an interesting mirror image to the previous article, which is focused on the point of view of those not living with ASD.

Mental Disorder or Neurodiversity? by Aaron Rothstein—–The author discusses whether differences in how the brain deals with sensory input (such as in ASD, ADHD, and dyslexia) should qualify as “disorders” or whether they are variations on the brain’s “wiring” that helps with our species survival by providing certain individuals with an ability to problem-solve in ways that most people can’t. The emergence of this debate within the community—which is rapidly gaining prominence in media outlets—makes this paper an important read for those interested in a more holistic view of ASD.

Major sources of information (publications)

Diagnostic and Statistical Manual, 5th edition (DSM-V): Although not a source solely focused on ASD (which comprises a relatively small part of the overall publication), it is nevertheless considered to be one of the key sources of information for professionals trying to determine whether a patient might be on the spectrum.

Journal of Autism and Developmental Disorders: The leading peer-reviewed, scholarly periodical about ASD and other closely related disorders; published monthly.

Autism Spectrum Digest: A monthly digital magazine centered around topics of interest to members of the ASD community and their families, such as helpful apps, current news related to ASD, legal/human rights issues, etc.

Electronic resources

Autistic Self-Advocacy Network: An advocacy group about ASD, for autistics and by autistics, which promotes programs, offers a resource library, and provides a source for news relating to the ASD community from an ASD perspective.

Research Autism: A UK organization whose focus is research of interventions in autism, as well as provide objective evaluations of the scientific evidence behind each. It also offers a number of useful resources, such as a database of publications relating to ASD, links to apps developed for people with ASD, and information on legislations and policies relevant to people with ASD.

Authorities

Hans Asperger: Hans Asperger played an important role in the history of Autism Spectrum Disorder. He was one of the first scientists to identify ASD, and the first to theorize that ASD is something that affects a person throughout their whole life rather than only through childhood as Leo Keller claimed (Sole-Smith, 2014). Asperger’s Syndrome, one of the most-known variations of ASD, was named after him (Asperger’s Syndrome, n.d.).

Temple Grandin: Though her formal education deals with animal caregiving, Dr. Grandin is nevertheless seen as a leading authority on autism by both the ASD community and researchers alike. She is recognized as one of the first advocates for autism to actually have autism, and her insights into how autistic people experience the world were instrumental in bringing awareness and some degree of acceptance to ASD. Dr. Grandin has been profiled by the New Yorker, interviewed in NPR and the New York Times, was the subject of a photo essay for Time magazine and was listed in the 2010 Time 100 list in the "Heroes" category (Flatow, 2006; Goldman, 2013; Slaby, 2009; Hauser, 2010). She has written a number of books on Autism, has received honorary degrees from several universities, and was awarded a Double Helix Medal (Cold Spring Harbor Laboratory, 2011; Grandin, 2016).

Key issues

"Neuro-diverse" versus “disabled”: There is surging controversy about whether milder forms of ASD should be considered disorders/disabilities or only a version of how the brain can function (like having a Mac vs a PC - they’re different, but it doesn’t mean one is faulty). A major reason behind this movement is that, as Dr. Grandin explains in her TED Talk, autistics might be worse than most people at some things, but they’re more skilled at others, like breaking down complex systems and understanding how they work (Grandin, 2010). Also in favour of this theory is the fact that those “on the spectrum” often enter professional fields in the area of their special interests and become experts on the subject (Grandin, 2010).

Prevalence of ASD in Women: A number of studies have shown that the signs doctors look for when diagnosing ASD are mainly those that manifest in males, meaning that women are often undiagnosed or misdiagnosed, with some doctors going so far as saying that “women can’t have Asperger’s” even when faced with a classic case according to current diagnosis definitions (Hughes, 2014). There is a slowly growing movement to fix this, but as of yet little has been on an official capacity other than studies repeatedly finding that a drastic change needs to be implemented.

Vaccines and Autism: A major issue related to autism and ASD is the widespread belief among the general population that vaccines can be to blame for a child’s autism. The problem started nearly two decades ago, with propaganda disguised as science by Andrew Wakefield that was widely spread through the internet and general media outlets. To this day, despite definitive proof to the contrary by a number of research findings, 20% of Canadians still believe that there is a link, while another 20% aren’t sure about it (Weeks). As a result, a number of parents started to refrain from giving their children vaccines, with serious consequences such as illnesses like measles having made a deadly comeback to the country (Weeks).

References

American Psychiatric Association. (2013). DSM V. American Psychiatric Association.

American Psychiatric Association. (2015). DSM V Update. American Psychiatric Association.

Arkowitz, H., & Lilienfeld, S. O. (2012, August 1). Is There Really an Autism Epidemic? Scientific American. Retrieved from https://www.scientificamerican.com/article/is-there-really-an-autism-epidemic/

Asperger’s Syndrome. (n.d.). In Merriam-Webster. Retrieved from

http://www.merriam-webster.com/dictionary/Asperger's%20syndrome

Autism Spectrum Digest. (2016). Autism Spectrum Digest. Retrieved from http://asdigest.com.

Autistic Self Advocacy Network. (2016). Autistic Self Advocacy Network. Retrieved from http://autisticadvocacy.org/

Bradley, E., Caldwell, P., & Underwood, L. (2013). Autism Spectrum Disorder. In J. McCarthy & E. Tsakanikos (Ed.), Handbook of Psychopathology in Intellectual Disability: Research, Practice, and Policy (pp. 237–264).

Brewer, R., & Murphy, J. (2016, July). People with Autism Can Read Emotions, Feel Empathy. Spectrum. Retrieved from https://www.scientificamerican.com/article/people-with-autism-can-read-emotions-feel-empathy1/

Cold Spring Harbor Laboratory. (2011). Cold Spring Harbor Laboratory honors stars of science and sports at sixth annual gala. Retrieved from http://www.cshl.edu/news-a-features/cold-spring-harbor-laboratory-honors-stars-of-science-and-sports-at-sixth-annual-gala.html

Davis, N. (2016, March 21). Autism spectrum has no clear cut-off point, research suggests. The Guardian [London]. Retrieved from https://www.theguardian.com/science/2016/mar/21/autism-spectrum-has-no-clear-cut-off-point-research-suggests-nature-genetics

Dichter, G. S. (2012). Functional magnetic resonance imaging of autism spectrum disorders. Dialogues in Clinical Neuroscience, 14(3), 319–351. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3513685/

Flatow, I. (Host). (2006, January 20). A Conversation with Temple Grandin [Television series episode]. In Talk of the Nation. National Public Radio.

Foster, R. (2014). Does the Equality Act 2010 ensure equality for individuals with Asperger syndrome in the legal arena?: A survey of recent UK case law Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(4). Retrieved from

http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR16

Fuentes, J., Bakare, M., Munir, K., Aguayo, P., Gaddour, N., & Öner, Ö. (2014). Developmental Disorders - Autism Spectrum Disorder. In J. M. Rey (Ed.), IACAPAP e-Textbook of Child and Adolescent Mental Health (p. C.2 1–35). Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions.

Goldman, A. (2013, April 12). Temple Grandin on Autism, Death, Celibacy and Cows. The New York Times. Retrieved from http://www.nytimes.com/2013/04/14/magazine/temple-grandin-on-autism-death-celibacy-and-cows.html?_r=0

Grandin, T. (2010, February). Temple Grandin: The world needs all kinds of minds. [Video file]. Retrieved from

https://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds?language=en#t-157979

Grandin, T. (2016). Temple Grandin Professional Resumé. Retrieved from http://www.grandin.com/professional.resume.html

Hauser, M. (2010, April 29). The 2010 TIME 100. Time. Retrieved from http://content.time.com/time/specials/packages/article/0,28804,1984685_1984949_1985222,00.html

Hughes, E. (2014). Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support? Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(4). Retrieved from http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR17

Journal of Autism and Developmental Disorders. Retrieved from

http://link.springer.com/journal/10803

Martin D. N. (2012) The ever changing social perception of autism spectrum disorders in the United States. Honors Thesis, East Carolina University. Retrieved from http://uncw.edu/csurf/Explorations/documents/DanielleMartin.pdf

Medical Library Association. (2016). Medical subject headings (MeSH).

Research Autism. (n.d.). Research Autism. Retrieved from http://researchautism.net/

Rothstein, A. (2012). Mental Disorder or Neurodiversity? The New Atlantis, 36. Retrieved from http://www.thenewatlantis.com/publications/mental-disorder-or-neurodiversity

Slaby, M. (2009). The Perspectives of Temple Grandin. Time. Retrieved from

http://content.time.com/time/photogallery/0,29307,1985143,00.html

Sole-Smith, V. (2014). The History of Autism. Parents. Retrieved from http://www.parents.com/health/autism/history-of-autism/

Stace, C. (2014). A Minority Group. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(3). Retrieved from http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR13

Teitel, E. (2015, August 25). Steve Silberman on autism and ‘neurodiversity’. MacLean's. Retrieved from http://www.macleans.ca/society/science/steve-silberman-on-autism-and-the-neurodiversity-movement/

Tonge,B., & Brereton, A. DSM-5 Autism Spectrum Disorder Fact Sheet. Retrieved from

http://www.timeforafuture.com.au/factsheets/CDPP%20Factsheet%201.%20DSM%205%20Autism%20Spectrum%20Disorder.pdf

Wang, J. (2014, March 29). How to Think About the Risk of Autism. The New York Times. Retrieved from http://www.nytimes.com/2014/03/30/opinion/sunday/how-to-think-about-the-risk-of-autism.html?_r=1

Weeks, C. (2015, February 6). Survey: One in five believe vaccine causes autism. The Globe and Mail [Toronto]. Retrieved from http://www.theglobeandmail.com/life/health-and-fitness/health/survey-finds-one-in-five-people-believe-measles-vaccines-cause-autism/article22851493/

Wing, L., Gould, J., & Gillberg, C. (2011). Autism spectrum disorders in the DSM-V: better or worse than the DSM-IV?. Research in developmental disabilities, 32(2), 768-773. Retrieved from http://www.sciencedirect.com/science/article/pii/S0891422210002647

Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., ... & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review.Journal of Autism and Developmental Disorders, 45(7), 1951-1966. Retrieved from http://link.springer.com/article/10.1007/s10803-014-2351-z

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Further Resources

Autism Women’s Network

Interactive Autism Network

Simons Foundation Autism Research Initiative (SFARI)

The official site for a research program funded by the Simons Foundation, which focuses on all aspects of autism research

Doctor Temple Grandin’s Site

Dr. Grandin’s site on autism. It has some of her writings on the subject as well as information on conference appearances.

ResearchGate Discussion Forum

A discussion page on ResearchGate on academic papers regarding ASD stigma. You can also search the overall discussion forum for other ASD-related discussions by academics.

Parents miss signs of autism in their daughters by Emily Anthes (Spectrum, 2016)

A study finds that parents of girls with autism are significantly less likely than those of boys to voice concerns about their child’s social behaviour.

Tumblr

Though mostly useful to familiarize oneself with ASD culture, members of the ASD community also post links to news and resources (usually with commentary on their perspective on the matter). Tags of interest: #asd, #actuallyautistic, #stimming, #aspielife

Stigma and the “Othering” of Autism by Lynne Soraya (Psychology Today, April 1, 2012)

An Aspie’s perspective on the stigma surrounding autism and what it means to support an autistic child.

Autism Speaks, But Not For Autistics by Dane La Born (The Free Weekly, April 6 2016)

An autistic’s perspective on the lesser-known controversy surrounding Autism Speaks, the #1 autism charity in the world.

Ce que signifient les étapes du développement chez un enfant autiste by Kathleen O’Grady (Huffington Post Quebec, 2016)

The Autism Speaks Controversy by Brianne McDunnough (Reporter Magazine, 2014)

Where Autism Got The Right Treatment In 2015 by Emily Willingham (Forbes, 2015)

Proteins that spark learning may play key part in autism by Ann Griswold (Spectrum, 2016)

Autism Spectrum Disorder Linked to Mutations in Some Mitochondria by (Neuroscience News, 2016)

Autism gene needed for growth of neurons during gestation by Jessica Wright (Spectrum, 2016)

[ashavant]

The American University System: Oppressing the non-elite.

So let me get this straight...in the 70's there was a community outcry to lower the amount of tax money that got put towards college tuition for future generations? American tax payers used to cover over 70% of college costs, allowing the young students straight out of highschool the ability to work a minimum wage summer job to literally pay their entire tuition. Those with part time jobs while in school were not very common. This allowed for an ability to succeed without the unnecessary baggage of financial stress and lack of sleep at 18 years old while taking 14+ credits, which for those of you who dont know is a true 40-60 hour work week alone. All of this hard work and achievement paved the way for these kids to enter adulthood as educated, debt free, and with the world at their fingertips. Not to mention, they had the incredible privilege of not having to become a self sufficient adult in the middle of the worst economic crisis since the depression...

Compare that romantic reality to our drastically different reality today. I will use my experiences as an example for this, while probably on the extreme spectrum of experiences, they are valid and carry merit nonetheless. I was always told as a child, "you have to go to college, its not an option" Yet, when i graduated highschool, my parents grew quiet. I grew up in a 5 person household in Orange County, CA (one of the most expensive places to live in the country) in a family who made roughly $40k a year, give or take (thats poverty folx). My step-father was an electrical contractor so income was often spuratic. Anyway, needless to say they had not one penny saved for my college tuition. My parents failed to put a single penny aside for anything regarding my well-being honestly. With no car, no money, no job, and no idea when or how I could recieve a college education, I was kicked out of my parents at 17 years old with nowhere to go. I couch surfed and was able to get a couple jobs, one at a crafts store and one at a sandwhich shop. After 2 long years of working my way out of homelessness, all I wanted was to start college! So, at age 19 I applied for financial aid. However, I was told because I was under 25 I needed my parents tax information. Well, my parents never filed on time and were incredible dodgy with communication. So, after months of going back and forth I ended up paying out of pocket for a full time coarse load at a community college. I was able to work my jobs and pay this, but with nothing left over for rent or food. I ended up getting kicked out of my place, had to apply for foodstamps, and had to start over from square one. Little did I know I would have to wait 5 years before I could finally give college another shot.

I had almost given up the idea of higher education. I was making good money in the food industry at this point and had a nice company car and a great home with an awesome roommate. But then, I met a boy. We traveled the country for three months with his bluegrass band and saw 32 states. Afterwards, we again found ourselves broke and homeless. We hunkered down, worked 80+ hour weeks, saved up, and moved to Portland Oregon, "where young people go to retire". Little did we know, retire would be the LAST thing we did when we got there. Cost of living was rising in Portland, but still nothing compared to Orange County, CA. We got good food jobs and nested for about a year. My boyfriend (we will call him N) got great grades in highschool and high test scores in his exit exams, so in 2014 he chose to get back into school as a Music Composition Major at age 26. His journey is a whole other terrible story. I wanted to return to school so badly, but knew I had to wait until I was old enough to not warrant my parents tax info. Finally, at age 24 I filed my FAFSA and went to a career counselor. I was directed in the career of Civil Engineering. Having no prior knowledge of this career or topic, I dove in blindly headfirst. I chose a community college due to the fact that I barely finished highschool and did not take ant exit exams. To my surprise, I did very well in my college settings. After one year I was able to transfer to a university! Me! I WAS GOING TO A UNIVERSITY! I could not believe it, and was soo excited. I had no clue how hard this would be, not the work, but just surviving through it. I should mention here that I have a mild dissability. I have endometriosis which is a chronic illness linked to hormones, ovarian cysts, and all that jazz which can result in disabling pain and in my case an emergency surgery from time to time. I also suffer from a mild form of PTSD. So, with those alone handling high stress loads can be very hard on my mental and physical well being.

Ok, so I was a 24 year old first generation college student (first person in my family to go to college) disabled lower class person wanting a higher education. Seems logical right? Well, once I got accepted to the university, I chose to change my major to Architecture, I had taken an intro class for general ed and fell inlove. My beginning of my first year was great! Lots of lectures and reading. Aside from my tuition multiplying literally 3x from my community college tuition which did not affect my financial aid disbursement, I was fairly stress free. Now keep in mind, my partner and I are both working 20-30 hour weeks to make ends meet while taking 12-14 credits. Its basically having 2 full time jobs. Anyway, the last term of my first year came around-my first studio class. I was so excited! Time to actually do architecture! I got the syllabus and was told was supplies were needed to be successful in the class. I was also told that doing all of the requirements for the assignment would result in a C grade, if any grade above that was desired extra work had to be put in. I thought, no biggie, bring it on. The next thing she said was, "absolutely no sleeping in the studio!" Thats when I had a feeling I was gonna be in trouble. After class I went to the art store got my supplies. I almost started crying as they read my total to me: "$682.80, please." And that was with my student discount and not including all of the future supplies I would need just for that term, which I will tell you now after all the drawings and models ended up being about $2,000. That is a whole lot. These studio classes also require many all-nighters just to have enough time to complete the assignments. Many times, due to having to work outside of school I could not complete my assignments or had to do them with less craft and care than I would like just to turn it in. This year, I recieved less in financial aid, my rent has gone up significantly, tuition went up, and there are new grade requirements: if you get anything less than a B-, youre immediately dropped from the school of Architecture. So, not completing assignments isnt an option anymore. This last term costed my much less money, but once I told my instructor I was out of money, his response was, "well, this is Architecture school." What the fuck am I supposed to do with that!? A roll of Velum (drafting design paper) costs $50-$70 pencils are $2 a piece, models cost like $100 each, the list of tools go on and on. I am already paying $10k a year for tuition, ensuring at the very least $70k of debt including my masters degree which you need to get your Architecture license. And at least $100k with the $500 a month I need to borrow a month for rent. I should not need to add thousands more of that for supplies my school should be providing. And this insane pressure of pulling all nighters to get done the amount of assignments it would take us to do in a whole week last term in 2 days!

The moral of this very long story is that college is not meant for those of us trying to climb the life ladder. Its meant for the already elite. Its meant for kids right out of highschool with parents who make enough money to pay their tuition, their rent, their whole lives! Meant for kids who travel to Europe for the summer instead of working 60 hours a week to make up for the money lost during school cuz you physically cannot work more than 25 hours. Its meant for kids who can call their mommies and complain about how mean their teacher is, not for those of us who cry every night about being afraid of ending up back on the streets in the snap of a finger. Its meant for kids who can work and think about school all day every day, not those of us preoccupied with being able to pay all of our bills and being able to afford food and health insurance.

HOWEVER, even if you are like me, worse, or better, YOU CAN DO IT! I have a damn 3.7 GPA. I may only get 3 hours of sleep a lot, cry almost weekly, probably have lost years of my life due to stress, and feel scared for my health, but shit IM FUCKING DOOOOIN IT! Even though our government, or school presidents, and pretty much everyone in power disagrees, you are so worth it and you are so capable of success no matter how much harder you have to work than everyone else. Because we have to work so much harder now, we will get to party that much harder when we make it. I WILL GRADUATE IN SPITE OF THE SYSTEM! I WILL SUCCEED IN SPITE OF THE SYSTEM! I WILL CHANGE THE FUCKING WORLD CUZ I AM A BADASS AND CAN DO ANYTHING YOU PRIVELEDGED FUCKS CAN DO, JUST BETTER!

[ebenpink]

2018 Top 10 Best in Show: Twitter http://bit.ly/2G5rj9K

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These Top 10 Best in Show: Twitter Patient Leaders manage to create easily digestible 280 character tweets to support, educate and encourage their communities. Whether they’ve created their own Twitter chat, participate actively in others’ chats, push out words of encouragement – they are the model of Twitter for #health

      Ashley Levinson Sells 

PCOS Patient Leader

Facebook | Twitter | Instagram

Ashley has served PCOS and chronic illness communities for over 18 years. She actively participates with multiple PCOS and health organizations to advance education and awareness for PCOS and chronic illness in social media and continues to advocate for PCOS and chronic illness through awareness events and legislative action in D.C.

Founder, #LemonFaceChallenge & #Heart4PCOS social media campaigns. 2006 Discovery Health Channel – Mystery Diagnosis Lobbying #HRes864 and #SRes336 in DC 2016 Ricardo Azziz PCOS Challenge Leadership Award PCOSC Magazine, copy editor PCOSC Patient Advisory Board Speaking 2 Heart Network, Advisor PCOS Petition with 20K supporters Connect with the 2018 WEGO Health Awards Best in Show: Twitter winner, Ashley. 

    Jeff Borghogg

Younger Onset Alzheimer’s Patient Leader

Facebook | Twitter | Instagram

“In March of 2016 at the age of 51 I was diagnosed with Younger Onset / Early-Stage Alzheimer’s Disease. Since my diagnosis, I have been working with great fervor with the National Alzheimer’s Association as a member of the National Early-Stage Advisory Group and a Early-Stage Ambassador with the Delaware Valley & Greater NJ Early-Stage Advisory Councils and an Alzheimer’s Congressional Team member. I advocate and create awareness for younger-onset Alzheimer’s daily via social media channels like Twitter, Facebook, LinkedIn, Instagram and Google+. “ Learn more about Jeff. 

    Buddy Project

Mental Health

Facebook | Twitter | Instagram

Buddy Project is a non-profit movement that aims to prevent suicide and self-harm by pairing people as buddies and raising awareness for mental health. Since April 8th, 2013, Buddy Project has been pairing teens and young adults with a buddy. We pair based on mutual interest and age. As of March 7th, 2018, over 211,000 people have signed up to be paired with a buddy. We are currently working on creating an app that will pair people as buddies based on their interests and age. Buddy Project is a 501(c)(3) organization that supports mental health and recovery centers throughout the United States. Read more about the Buddy Project.

      Ace Ratcliff

Disability Rights Patient Leader

Facebook | Twitter

Ace’s advocacy is centered around intersectional feminism, with a specific focus on disability rights. She lives with hypermobile Ehlers-Danlos Syndrome, dysautonomia, and mast cell activation syndrome, which all make for a particularly rebellious meatcage. Ace writes about disability inclusion and representation. She has bylines at Huffington Post, SELF Magazine, Bustle, and Bitch Magazine. She has been featured in an Upworthy video, as well as at the Guardian and The Economist. She’s been featured on several podcasts, including Maximum Fun’s Reading Glasses and WNYC’s Note to Self. She’s also very active on Twitter! Check out Ace’s nominee profile. 

  Nicole Sigur

Cystic Fibrosis Patient Leader

Twitter

“I have two goals in life: don’t die from Cystic Fibrosis and make people laugh. So far, I’m 2 for 2. Spirit fingers. Random accomplishments include the publication of my first children’s book “Two Cents” – a percentage of the profits go toward the Cystic Fibrosis Foundation. Bachelor’s degree – graduated top of my class. Guest lecturer for Robert Wood Johnson Medical School. Full-time public relations professional. Children’s advocate. Self-proclaimed comedian. Noodle connoisseur. Can’t breathe. Probably needs to sit down. Stops to smell the 65 roses regardless.” Connect with Nicole.

    Erez Shek

Mental Health Patient Leader

Facebook | Twitter | Instagram

Erez created “The Shek Check” YouTube Channel after a Suicide attempt in 2016 that opened his eyes to so much. Living with Bipolar Disorder was not the only part of his Mental Health that needed to be cared for. “The Shek Check” explores the way we feel, think and behave (our Mental Health in totality), bringing awareness to its universal nature through sharing of lived experiences and humor, “The Shek Check” promotes the fact check that matters the most to our Mental Health, the one that starts within us. Normalizing the conversation so we can all start having those conversations, letting a little more light into ourselves. Learn more about the Shek Check. 

  Kerry Wong

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

I’ve been living the chronic life for 10 years, with arthritis, fibromyalgia, sarcoidosis, & more. I aim to show others who are suffering that they are not alone, and to educate those who care but don’t understand how to be there for us in the ways we really need them to through my blog, Float Like a Buttahfly. I’ve fallen in love with advocacy, and do that as much as possible, whether by social media, phone, email, or in person at my legislators’ offices. I also help plan awareness events, and recruit & train newer advocates. This year, I hosted the first sarcoidosis event in my area (an accessible/inclusive “walk ‘n’ roll”), and I’m working to start a support group in the fall. Follow Kerry.

    Anna Evangeline | Six Hips

Juvenile Arthritis Patient Leader

Facebook | Twitter | Instagram

Anna is an athlete and advocate living with juvenile arthritis since age 11. Her blog “Six Hips and Counting” is named for the 6 hip replacement surgeries she’s had starting at age 14. Growing up and pursuing college, a career, relationships, etc. on top of managing her health has often left Anna feeling lonely and isolated from her healthy peers – to this day she shares with unflinching honesty what it’s like when the majority of one’s lived experience is through the lens of “being sick.” As a result, the cornerstone of Anna’s advocacy is ensuring that other young adult patients feel less alone and that there are healthcare solutions designed to meet their unique needs. Connect with Anna.

    Randy Patrick

MS Patient Leader

Facebook | Twitter | Instagram

“After being dx’d with MS in November 2012, I wanted to do my part in helping others who are diagnosed. Talking with others via social media helped me the most & helped me realize this disease was manageable. I created Must Stop MS! on Facebook as a place to provide support, raise awareness & provide news & information about Multiple Sclerosis. I ventured into the Twitter and Instagram shortly after. The MS Community is filled with amazing & supportive people & are the strongest people I know. I host #ChatMS every Monday at 7pm EST, which is a weekly chat dedicated to MS. #ChatMS is on Twitter, via a Facebook closed group, and now Instagram. It’s a great place to get support, learn, & share!” Learn more about Randy and #ChatMS.

    Therese Humphrey

RA Patient Leader

Facebook | Twitter

“Diagnosed with RA in 1986-age 26. I’m often disappointed by others who don’t realize the true impact of the systemic inflammation that comes with this disease! When people aren’t personally touched in some way, how could they really know. I lived in silence for too long. I decided to try Twitter in 2011, hoping to find others affected by RA and to spread awareness. It was then I finally found my voice! The most valuable aspect for me is that I have met thousands of truly inspirational people fighting the same battle and I became a strong patient advocate. I have overcome great challenges & continue to since diagnosed & I share my experiences in hoping to help others to never give up. Connect with Therese.

        Time to update who you follow! Scroll back to connect with these 10 talented tweeters and click below to share the inspiration with your own followers.

    Looking to engage more with your community on Twitter? Check out this #PatientLeader webinar for Twitter tips, strategies & ideas!

The post 2018 Top 10 Best in Show: Twitter appeared first on WEGO Health.

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[gryffon]

gonna post that thing i wrote about my abusive ex, this isnt a callout but its just like, all the shit ive been wanting to say and havent felt like i could. gonna namedrop people, gonna not give a fuck, i cant cw for everything but there are rape mentions, physical assault mentions and like. general feelings that happen the wake of emotional abuse.

i dont check often but my ex has deleted the blog she was currently using, (@windowpainter or somethng. she was @hamgubber before, previously @miniaturehorse if anybody remembers from when we were totgether and would post on each others blogs nonstop lol) she has a history of lurking around and worming her way into befriending popular people in online subcommunities i am part of or adjacent to. i have not spoken to her since i realized she was abusive and started to try to pull out of our codependent dynamic. she panicked when i realized actions speak louder than words and her long winded apologies, excuses, and textbookish tripe about DBT and getting better or whatever meant nothing in the face of months of repeated lying, breaking of promises, degradation, disrespect to me as a person, disregard of my physical disabilities, insults, patronization, manipulation, multiple instances of cheating, antagonization, neglect, extortion and overall emotional abuse. when she caught wind that i was going to leave her she wrote me a series of emails totaling over 30,000 words, all varying from "i love you please dont leave me we can work this out. breaking up with me is weak." to "you are not a victim. you are not a victim. here is a categorized list of the ways in which you are abusive while i downplay my own behaviors and patronize you. here's an ultimatum and you are not allowed to respond with more than one sentence." to which i disregarded and wrote up a long, thoughtful reply and chose to never send, ending contact with her for good. this was like, 2013 or 2014.

she never called me out, and i never called her out despite giving very serious consideration to it. i was listening to the advice of my therapist at the time, who told me that she thrives on drama and spends her life constantly creating it, and to give her that kind of attention was exactly what she wanted and would only engage her more in my life and be more degrading to my mental health. the best course of action was to give her nothing, and not give her any more power or influence over me, any footholds or any more of my time, consideration, energy or thought. if anybody reading this has endured emotional abuse from somebody you love, you know it is extremely difficult to totally ignore somebody like this, especially when that person has isolated you from the majority of your support system and friends and you have shaped your entire identity around your relationship with your abuser. but i have followed my therapists advice. i have been working on moving on.

still, over the past few years ive had my mutuals contacted by her friends and told to stop talking to me. ive had people i follow put her and her friends on my dash, which up until recently would send me into a panic that lasted several hours. i have a lot of people in the lesbian/commie/leftist/trans/etc/whatever circles on tumblr who just like randomly have me blocked for no reason (since i dont give a fuck and im going for a spirit of total honesty here, ill name drop @butchcommunist, who she dated for a period of time iirc. a lot of my followeds and mutuals reblog from her. i made a point not to check either of their blogs after finding out but it was upsetting since i would see julia all over my dash. that connection still exists in my mind and its pretty upsetting.). ultimately, and rationally i know that these things do not matter that much. i have a vibrant, healthy and loving circle of friends outside of the internet/tumblr and some randos on the internet having me blocked doesn't really mean anything in the scheme of things. still, when this shit happened it felt terrifying and i was horrified, my emotions magnified by the effects of emotional abuse. despite my VERY intense urge for closure, i try to keep as far away from her as possible.

i gave this woman a year of my life that in my memory is defined by her. i was very madly in love and i spent countless hours at her beck and call, countless hours in calls and in text conversations with her, countless hours supporting her through breakdowns, countless hours talking through her fears and worries, countless hours defending her when she stirred up drama, countless hours defending her horrible behavior to my friends, countless hours rationalizing her abuse to myself and people who approached me with worry, countless hours loving her and wondering why it felt so horrifically painful to be with somebody who told you they wanted to spend the rest of their life with you. almost all the money i was making at the time was spent on her. i helped her move across the continent. i had her at my house for weeks. she fucking took out a loan from my mom. despite how big a role she played in my life, over the past 3 years since our falling out i have only checked her blog less times than i can count on my fingers, usually in moments of distress and in the spirit of self-destruction.

i know for a fact she has convinced her friends to check my blog for her god knows how many times, telling them about her fear of me as a 'dangerous person', that i’m going to call her out, her "fear" that im obsessing over her and am quietly plotting to ruin her life. she's scared for a good reason, but not because i'm an abusive bitter ex out on a smear campaign to slander her innocent name and ruin her life in the name of revenge. she's scared because she knows i have some undeniably serious receipts on her. i have receipts of her sending me a horrifying letter her ex had written her describing a graphic instance of a time my ex had raped her, and of her admitting outright to the rape. i have logs of her checking her rape victim's blog and telling me how exasperated she was her victim was still angry with her even after she apologized, and couldn't understand why her victim was stuck on her and wouldnt move on, going on to blame modern feminism and its tendency to portray abusers and rapists as incorrigible. i have receipts of her admitting to perpetrating emotional and physical abuse in her previous relationships, like an instance where she describes losing control of herself and beating her ex senselessly. i have talked with exes, who confirm stories she had told me where she would cut her arms in her presence, deep enough that her life was at risk, and then refuse to go to the hospital, leaving her girlfriend to either bandage and tend to her wounds or else my ex would bleed out and die. those are just the more horrific ones. i have many receipts that document her emotional abuse towards me as well, which im barely even getting into here. i know plenty of other people have experiences with her and accounts of interacting with her that undeniably portrays her as a serial abuser, rapist, and extortionist and exposes the falsehood of her charming and intelligent persona.

several times i have considered calling her out because she has proven herself beyond a doubt that she is a serial abuser who leaves a trail of burning bridges in her wake. i have no doubts that the evidence i have against her is completely solid, and her claims of my status as an abuser that she perpetuates to her friends are built on pillars of sand. i am not afraid of anything she could bring to the table anymore. i have spoken quite a bit with exes and ex friends (some of which sided with her during our breakup and who eventually ended up cutting off, and we reconnected with years after), and they all suggest the same shit. she is manipulative to her very core and will not stop hurting and using people until she dies.

these are big claims and again, this isn't a callout and the reason im not providing the logs is because im just trying to get out my thoughts in an honest way and im not trying to make a case about anything. this is cathartic. im so fucking tired of feeling like its a secret. i dont even know what blog shes using or whatever and while that scares me, i don't care anymore. people who are still semi-big names in the online communities i drift around in still have me blocked and a lot of times i wish i could message them and tell them "hey, you know she's wrong, and i have absolute proof." but my self worth is high enough that i dont need to go around convincing every single rando who doesn't like me that im a good person, not to mention the risk of indirect contact through those who's lives she is still present in.

for a long time the way i coped was by holding onto the idea that she would apologize to me, and i could finally have closure. she apologized to the ex i mentioned earlier, and because of that i hoped she would grow enough as a person to realize that there is literally no way any rational being could look at our relationship and say that, yeah, i was the one hurting her. apparently thats too much credit to give her, and i realize she only apologized to her ex because she wanted me to think she was changing, growing and a good person at heart who just had a rough past. after enough time, enough conversations with people who she was previously close to, i have accepted that she will never truly dedicate herself to getting better. she will always be using people, always be hurting people, always lying, always hypocritical, always disingenuous and always covering her ass by hiding under the language of victimhood, trauma, recovery, self-improvment, DBT, and therapy to convince her victims that her offences are missteps in her journey to improvement. 

this isn't a callout, this isn't meant to be circulated as a warning, this isn't meant to be any sort of vengeance or crusade. i dont even think shes fuckin on tumblr anymore lol. i don't care anymore. i dont care what people take this as. this is me writing an honest, open, reflective, cathartic processing of the scenario that impacted my teenage years so severely.  this isnt concise or well written and i dont need it to be. i've spent too many years wanting to talk about this, needing to process it more openly, but being riddled with horrific anxiety and fear, worrying about her and her social influence and her ability to impact my life. but its been a long time. ive worked hard at this. ive worked hard to get past this. ive worked hard to learn how to be with people who will treat me with kindness. i needed to write this and i needed to post this without editing every sentence a thousand times. this is largely unedited. i dont care if this makes me look pathetic or obsessed with her ive been letting these feelings stir for years and im just ready to breathe again.

if you want to talk about this post DM me or whatever. if you know her and think its all bullshit and you want logs, sure. i dont have anything to hide anymore. her name is viv and she is the worst person i have ever met and i feel sorry that i gave her so much of my love. thanks.

[dy1kjxxa-blog]

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