#from experience i can say getting pain meds when someone is chronically ill is a total nightmare lol

[adventuringblind]

Chaotically Ill and Chronically Cute

Lando Norris x Reader

Genre: Fluff

Request: yes! I really like this one and I hope it gives you the feels you were talking about :)

Summary: Lando takes care of his chronically ill girlfriend of a flare day

Warnings: insecurities, this is short

Notes: I purposely left it as a not specified illness. I want you all to have an emersive experience. I personally have MS so it's more directed that way but I tried to make as open as possible.

Masterlist

Chronic Illness. Something that a good chunk of the population deals with. Some are visible and others are invisible.

Hers is just that. Invisible. Unseen.

She's been called many names by oblivious humans. Those who see her as lazy and unhealthy. The ones who ask her dumb questions. The people that give unwarranted health advice.

They can't seem to understand that she puts on a good face. Tries her hardest to seem fine. Walks around and goes out with no issues.

However, some days are better than others. Some days make her want to curl up in her and never come out. The pain is too bad to move. Limbs refusing to work. Her mind refusing to cooperate.

Today is one of those days.

Lando is home for the off weekend. The two are spending their time in eachothers embrace.

He doesn't care one but that her body is fighting against her. He knows she didn't choose this, and it's far from her fault. Despite that, she still ends up feeling like a burden. Lando deserves someone who can be there to support him; not the other way around.

She doesn’t say anything as her body practically gives out on her. She doesn’t say anything when the pain is so bad in the afternoon she wants to cry. She doesn’t say anything when her mind won’t let her sleep because she can’t get comfortable.

Much to her surprise, Lando had caught on. She forgets he can read her so easily.

The next morning she is awoken by Lando running his fingers across her bare skin. “Good-morning beautiful, I made you something to eat.”

He doesn’t say that he knows she’s in pain. Mostly because he knows she’ll deny it and try to prove him wrong. Instead, he just treats her like a queen.

He carries her down the stairs with ease and makes sure she has everything she needs. He tell her that she can let the tears go and gets her pain meds.

He’s quick to catch her when her limbs give out, then carries her to bed and tucks her in.

“I feel like such a burden on you sometimes.” She murmurs into his skin.

“Your not to blame for what your body does. And I don’t think it’s possible for someone so beautiful to be a burden.”

[salt-baby]

As someone who is currently working in the healthcare field and looking at attended medical school, can you please elaborate on the ableism and doctors post you made? I’d very much like to avoid inadvertently falling into that category.

Somehow this missed my radar, my bad!

It's a difficult question to answer, although it is the right question to be asking.

You can find my other elaborations here and here, which will likely be helpful.

But to address your specific question, when I think about the ableism of practitioners, in some cases it is just bias, but in many it's just your run of the mill ignorance.

It takes experience to work well with disabled people - both because of the heterogeneity of them, and because the disabled experience is so far removed from the able bodied one.

Some people like myself call themselves disabled as an identity they're proud of, some people call themselves disabled but are uncomfortable with their condition to various degrees, and a lot of people would find it offensive for you to call them disabled because they would call themselves chronically ill or not impaired at all.

In your medical practice, "disabled" is going to be a legal term with a set definition, used to distribute benefits. You'll be taught an impairment model of disability, and your first instinct will likely be to try and fix the problem your patient is experiencing.

In a case like mine, that's not a mindset the patient is going to appreciate, as backwards as it sounds. Yes, I'm in a doctor's office to get treated, but the reality is that expert doctors have already evaluated my conditions and done all they can to help me. There's no quick fix - the fantasy of curing a difficult case is impossible with me, but it doesn't stop some young doctors from trying. My disability isn't one illness, but ten, and often what disables me is the environment around me rather than my actual illness (this is called the social model of disability, and that's where you should start studying).

I'm in a doctor's office to find relief from specific symptoms, or for a new problem (secondary to my existing conditions) that has popped up. Some residents have reviewed my entire medical file, and asked about things that weren't followed up on, and there's only so many times I can say "there's nothing we can do about it". Many premeds, when I mention the medications I'm taking, think that there must be some kind of better medication setup for me. Except there isn't, all of my meds are essential, and at this stage of illness, all medications have nasty side effects. I will never get better and will likely live the rest of my life on immunosuppressants and I'm okay with that, but that's very difficult for able bodied people, esp medical practitioners, to accept.

And in many cases, medical practitioners have put their foot in their mouth by just being ignorant. One person working at a rehab hospital asked if I slept in my orthotics - the answer is no, obviously, orthotics are painful to wear (it's also bad form to ask a disabled person about their disability just because you're curious). Someone told me it'll be okay, they used to wear wrist braces too and they're fine now - in reality, their supervisor just told me to consult surgeons, I was recommended casts, and my wrists remain permanently displaced to this day. I lost most of my ability to write. Our issues were not the same.

On another occasion, a premed picked up my orthotics and moved them away from me without asking - those are expensive (2000$ USD) and irreplaceable, and I need them to walk, I'm vulnerable without them. But to others, they wouldn't be aware that those braces are that valuable. Many disabled people, myself included, view mobility aids as an extension of their own body. For all intents and purposes, my orthotics are my "knees". I often compare it to a phone - it'd be really weird to take someone's phone and move it away from them, or even to touch it unannounced in the first place.

The reality of what a disabled life actually looks like is obscure to the vast majority of able bodied people. Let me be clear, I live a happy and satisfying life, where I enjoy my work and my friends and my family. My existence is not a tragedy, and when it's treated like one, it devalues my hard-won happiness in life and what I have to contribute to the world. But at the same time, every hour of every day is impacted by my disability. I have to change how I cook because I struggle with lifting a pot or standing on my feet for too long, my closet has to be adapted for my orthotics and nerve pain, a number of medications have to be kept basically within ten feet of me at all times, and I have to be very careful anytime I eat something I didn't prepare myself.

You may prescribe a medication which you know can cause nausea, and not realize to your patient, that side effect looks like being sick everyday, skipping meals, wearing a mask so a smell doesn't set you off, and not enjoying eating anymore. You may write a script for the test which is medically the correct option, but your patient may be sensitive to the specifics of the procedure (ie, for religious reasons, it may be difficult to strip down to a gown for some of the more involved imaging procedures). Cystometry and other urological procedures especially. I find this is where doctors sometimes inadvertently do harm. The best option for your patient isn't always the best option medically - it's what fits their priorities and improves their quality of life.

Understand that the current culture in medicine, for doctors, is often very callous and frustrated towards their patients. Recently I heard someone express that their patient needed to just accept their disability already and start being compliant with treatment - they had been disabled for three months. It took me a year to feel even remotely settled with becoming disabled, and my disability isn't nearly as severe as that patient's. Do not follow in your colleagues' footsteps.

If you spend the time trying to understand your patients (which may look like reading disability theory papers, memoirs, watching documentaries, possibly even volunteering, talking to some of your seniors with more experience, etc) then you're already miles better than most of your coworkers. Take the time to consider it from your patients point of view, and even though it's not what's in your textbook, appreciate the value of the information your patient brings to the table (their experience, their concerns, their gut feelings), and you've already done what most disabled people are desperately searching for in a practitioner.

The reality of a minority identity, is that for adults who have become accustomed to something like being disabled, it matters a lot more where your heart is than what you actually say. I don't care if someone is politically correct - I care if they're trying. Even if they're not quite there, that effort will pretty much always be seen and appreciated. I'd far rather someone call me "handicapped" but never view me as lesser, rather than someone who falls over themselves to "accommodate my limitations" and never actually intends to accommodate anything. Be sincere, and you can make mistakes, we'll know what the intention was.

Best of luck, my friend.

[lilacs-world]

I feel like I’m chronically not okay but idk if I’m valid enough to label myself as chronically ill. I am able to work 40h a week but with the cost of laying in bed the rest of the day when I’m back home. In the weekends I sleep mostly. My room is a disaster because I never have the energy to tackle the chaos. I wished I was able to walk to work and back but standing for more than 15 min is already exhausting me and I get dizzy and lightheaded. I am constantly in pain, my normal pain level is on good days at a 2 on bad days it’s at a 4 or 5 but maybe I’m too modest about my pain due to fear of admitting I’m not okay. I am always tired even if I sleep usually enough. At times I feel more refreshed with only 4 hours of sleep hell knows why. I am waking up daily at 5:45am to get myself ready for 8am work. I don’t know if I’m ever gonna be a functioning adult. I am scared of the moment I will unmask bcs im masking daily due to Audhd. Plus daily I’m confused because we are often switching and my quality at work at times fluctuating and my TLs wondering wtf bcs we know u know all the processes so wtf. Daily I feel like I know only a specific part of the processes and I have days where I ask so many questions that one of the TLs told me they are growing gray hairs bcs of me asking so much. The doctors in my country are shit when I mentioned suspecting we are a system they said nah it’s just ur anxiety. When I questioned if I have adhd my former psych said nah only kids can have it. My former therapist said yeah after unofficially diagnosing me with it. Autism I suspect that too and I got my confirmation more or less from my bf who’s on the spectrum as well. He got his confirmation he has adhd as well by me noticing lots of adhd things in him and he has now meds whilst me is in this godforsaken country that isn’t taking me seriously. I got my confirmation I have adhd when I took speed and realised for the first time "so this is how neurotypicals experience their life?" I for once had a train of thoughts in order and not a carambolage of luggage’s getting stuck in the baggage claim belt. I sobbed so hard. On good days I am able to remember and memorise lots of shit. But on bad days I barely anything. My body is out of control. I have pcos and it’s ravaging my body. I grow hair on my chin and arms and it’s making me uncomfortable and I developed anxiety about having hair in my face to the point over pluck and over shave it. My period is out of control. I either bleed for 2 months consecutive or I don’t have my period for 6 months. I am anemic due to it. I am such a pale human that I’m constantly being asked if I am okay. Oh yeah not to forget having an autoimmune disease since I am 2 years old. Having to deal with psoriasis break outs each winter where I end up being covered on my legs, arms , ass with skin patches of psoriasis. At times it’s even in my eyebrows and on my scalp. Each winter is a torture for me. I am battling with depression as well. Luckily this last year it wasn’t so overbearing and I felt more human than I used to in the past. Nonetheless my anxiety is ravaging and leaving me crippled daily. I sound ridiculous talking about myself rn bcs in my brain I feel like you aren’t this sick or unwell you are faking this you are a horrible human for saying all this things but I know it’s probably my internal ableism and the internal critical subconsciously developed voices of my surroundings telling me I’m not actually sick and I need to go to work even if sick etc. Sigh. Idk where I wanted to go with this whole post. I know you guys don’t see often a personal post from me or posts from me and more reblogs of stuff I enjoy seeing and stuff I wanna boost and stuff I find important or relatable or stuff that I think might make someone feel better and less anxious or feel seen. I hope this is fine. I hope being more real is helpful. Maybe I should do this rambling on my other blog @unfilteredrealities where I tried to talk about life in a real way , unfiltered. You can even send in your own submissions if u want to.

Anyway thanks for reading my ted talk.

TLDR: I don’t know if I’m actually chronically ill and if I’m valid enough to label myself as that and then I rambled about my life experiences with audhd, did, anxiety, depression, pcos, psoriasis and there are more but I’m exhausted.

[batsarebetterthanpeople]

Man those people on your ‘why are you straight edge’ poll are really showing their disdain for people who engage with any sort of drug… if I may add, I voted for having a medical restriction (my liver is failing thank youuuu immune system) AND I also take prescription opiate medication to help with pain. Every time I take my painkillers on days where I’m not working so that I can enjoy my hobbies I have complicated feelings about it because anti opiate rhetoric is just EVERYWHERE and it’s like… I just want to have a nice day. Getting over the ‘oh but it can be ADDICTIVE’ stigma is so important and it’s really not different just because I have a prescription. People who are so nasty about drug use for recreation are so stressful to me.

Ikr it's like people have such disdain for addicts, and drug users in general. I get upset about this because while I personally am a very casual user and I spend most of the time sober and am self assured so I can walk people being dicks about it off, but I know addicts and their lives are hard enough without all the stigma piled on top of it. I just wish everyone could be addiction neutral and pro harm reduction but they're so moralistic about it. I wasnt the politest I could have been about people not drinking and having sex because I was trying to keep it light and I know people take things like this really serious and it kinda backfired.

But like I totally know what you mean about the opioid thing. I really think that our society could benefit from being a little more addiction neutral, because yeah sometimes substance dependency does ruin your life, but I'm neurodivergent and I've met people where I think that doing life with drugs is better for them. Like you raise a great point about opioids. They're dangerous and addictive but if you're in pain because of a disability you need pain management. It's not really an option if you want to lead a normal life. There's a lot of heroin addicts who got that way because they needed pain management and their doctors refused them on the basis that they might become addicted, but taking a daily pill to improve your life, while it may be illegal depending on the substance, isn't bad. I bring up my own neurodivergence because I've heard of the same thing with ADHD and stimulants. Most people who have an ADHD diagnosis can get an Adderall prescription, but undiagnosed people and people falling through insurance cracks will sometimes turn to the street version. And it's like those people, both the ones with a script and the ones who are self medicating, should not be forced to live a substandard life because of someone else imagines there's some purity to a life without drugs. The goal should be to get those people the drugs they need in the safest way possible.

And I come down really easy, to the point where I forget to take prescription meds and don't experience any ill effects, but I have a friend who experiences a come down from their adhd meds thats not unlike the comedown ive seen from my other friend who's a meth user, and this friend with the ADHD meds can't function without them. But when the doctor and the pharmacist get them their meds on time they live a perfectly happy fulfilling life. That's what I mean when I say I'm addiction neutral. Most people who get addicted didn't just pick up heroin or whatever one day for shits and giggles. When I fuck around with "highly addictive" substances I make sure I'm in a good place and it's not a problem to drop them. People who develop problems are usually either they're escaping from something or self medicating. The goal for society can't be to never do drugs we've had drugs literally for longer than we've been humans.

I've heard second hand of a study which I haven't gone looking for, I might, because as you can tell this is a bit of a soap box for me, where they gave Heroin addicts a prescribed dose of heroin like you would pick up Percocet for chronic pain at a pharmacy, and because those addicts weren't shooting up mystery amounts and worrying where they were going to get their next hit from so they didn't start rattling and all the other things that make addicts lives hell, they were able to start doing things like holding down jobs. That study should have been a game changer. I want addicts to be able to live, and selfishly I want to be able to go to the drug store when I'm bored and say "one mdma high no fentanyl please" and leave with something to spice up the afternoon. That's like, not a moral failing on my part even though I'm not self medicating I'm just having fun.

The way the war on drugs has ruined drugs, which like, genuinely drugs are sort of magical when you think about it. Not just the fun ones either. Like when I was a baby I had a really bad bladder infection that absolutely would have killed me if I had had that same situation just like 100 years ago, but my mom was able to force a pill down my throat and it went away. Since then I've probably had at least a dozen little things like that that would have killed me dead if someone hadn't invented a chemical that could interact with my body and make it genuinely not a problem. and the fact that we have that for things like chronic pain and we're too afraid to use it because of stigma is so insane. Like god forbid people get high.

[melanatedkink]

Can I Wake Up First?

Need a story to comfort the chronic pain in my body. Anybody who can relate, I genuinely hope for the best for you. Not all suffering is a lesson. Sometimes, it's just bull.

Pairing: Y/N x Mirio, Bakugo, Tamaki, (individually)

Warnings: Ambiguous pain(insert illness if you like to self- insert), angst to comfort, gender neutral

You loved Mirio. You do. You really do. However, it was safe to say that the honeymoon phase was effectively dead. At least, when it came to his habits, it was nearly impossible to forgive. You remember the day his quirk was beginning to comeback. You insisted on taking him out that night to celebrate. You expected happy tears. You expected his motivation to skyrocket at this new information. What didn't come to forefront of your mind, was his 5 o'clock alarm.

While he was recovering, Mirio would give you grace, setting his alarm to wake you up just an hour before you had to be at work. You were not a morning person, even while he was being lenient with you, but he helped you get your mind ready for work. It wasn't your fault. Every morning was a struggle as you woke up with the shakes. You'd experience horrible, squeezing, spasming muscles just minutes into consciousness. It pretty much kept you in bed until you got some medicine in you.

And who was right there to administer that? The same guy who was switching up on you now. See, when he was a hero, you two hadn't met, yet. So you were unaware of his habit at waking up at 5 am. As soon as his feet hit the ground, his routine was in motion. He hit the shower, grabbed his duffel bag, left a quick kiss on your "sleeping" form, and headed straight to the gym. The only other contact you get for him is his text saying he finally made it to Suneater's agency three hours later, when you were limping your way to the kitchen for your savior in a bottle.

And this morning, you had enough as soon as your eyes opened to his stupid phone. As he came out of the shower, he stumbled to a halt. You were sitting straight up, despite how your muscles were beginning to scream at you. He flicked the light on, as if to comfirm that you were indeed up. Meanwhile, you were trying your hardest not take that gesture as an act of violence.

"Babe? Did I wake you?" Mirio whispered as he inched toward your side of the bed.

He took your hands in his as he sat next to you. You allowed yourself to find peace in his eyes. Maybe it was the pain, or maybe it was the loss of contact you'd been getting, but you were feeling yourself break right in front of him.

"Do you have to wake up so early?" you croaked, the sleep heavy in your voice.

His words caught in his throat. Technically, no, but he was a creature of habit, so...

"Yeah, I would like to,"

You figured he'd say that. You took a steady breath and squeezed his hands. But before you could find the words, his face lit up. He raced out the door without a word, leaving you completely dumbfounded. You scanned the room for his bag, just to ensure your man didn't straight up ditch you. The door swung open, again, and Mirio was right by your side with water, your meds, and your favorite juice.

"Thank you-" you were cut off with a pill pressed against your lips.

Amid his rearranging your bedside table and comforting you, Mirio managed to whisper an explanation.

"I was so excited about my quirk I... I wanted to hurry up and be someone people could rely on again, but my baby needs me the most, right now,"

It was always interesting seeing Mirio become so meek. Whether it was softening his voice, his kisses, or his hands to make it easier to keep from overstimulating you, he was always adhering to your needs. Which is also why it took you so damn long just to address this.

"Would you like anything else?" he asked.

"Would you let me take you out?" you replied, a flirty lilt in your tone.

He barked out a laugh," I should be taking you out for leaving you in pain this long,"

"That's exactly why," you admitted," Sweetheart, you do so much for me, all the time. Even if it's not helping me start my day, you're there throughout, and you're there when I get home. I just... I never want to stop doing things for you. So, please?"

He sighed through his nose, having a war with himself before kissing a gentle confirmation on your lips.

"Fine, but I'm buying you breakfast before I head out,"

"But I wanna go back to sleep~" you whined.

"You can," he pecked you again," when you're done eating,"

[alullinchaos]

vent and a lot of thoughts below the read more related to illness (chronic illness) and disability

(large inhale. large exhale.) i try not to talk about being sick very much. for a variety of reasons mainly because I feel like the label of "chronically ill" doesn't belong to me. because all the people I see online who talk about being chronically ill are constantly dealing with symptoms, either due to their healthcare team not treating them properly or their symptoms not Being extremely treatable. I am lucky. I take my pill, one pill, every day and I am mostly okay. "mostly" okay, in that I can't run or exercise hardly at all. in that I feel extremely uncomfortable using a flight of stairs, and often am in pain when doing so at school (because of my backpack). in that I never know how much I'm going to sleep at night, that I often don't feel fully rested when I wake up. I am constantly experiencing some level of physical discomfort or pain, and while it is never something I can't just ignore, it does annoy me. this is not to mention the mental load of taking my medication. I have to take it an hour (at least) before I eat breakfast, so I wake up, take it, and go back to sleep. so every single day I have to ask myself if I remember taking it (hard to do so when you're half asleep and when it's the same every single time) and I stress about it a lot. my dose just got upped again even though I'm not sure it should've been but I don't feel comfortable starting a discussion with my provider about it. every time I see her (like I did earlier this week) the discussion is always the same. I never feel more informed. I never feel like I'm being properly treated, even though she's nice to me and I get my meds. this probably has something to do with the fact that she made me believe I had cancer for a month. not maliciously, she's just sort of incompetent. the thing about my medication is that at some point if I stop taking it I'll die, and I have no idea when that will be, but I assume if my dosage is getting upped again then that day is coming closer. I don't know if this means it's already hit. I'm almost at the number my friend gave me for their "severe" prescription, because they recently got diagnosed with the same autoimmune disorder I have, and they were given that dosage because they're "severe." so am I severe? I have no idea. obviously I will continue to take my medication. it makes my life substantially better. I can kinda do things now, which I couldn't before. but I think it makes a difference in my mind if it's me taking it because I don't want to feel like shit or if it's me taking it because I'll die otherwise, y'know? in a sense they are the same because if I go untreated then it'd lead to my death because of the effects on the rest of my body. but they are also very different, because looking out for the symptoms of Not Feeling Great as a way to know I forgot my medication vs. looking out for symptoms of About To Go Into a Coma and Possibly Die are very different things. i say all this and i barely feel comfortable calling myself disabled, because a lot of disabled people are people who can't be "helped" and i'm very sorry for them. i keep thinking about that post someone made about how they had two moms and then they were gay, and their experience being gay was totally different from what people normally have to deal with because of the total absence of homophobia or ignorance on the subject. and how identities shouldn't be defined by suffering. am I only disabled if I were to lose access to my medication? am I only disabled if someone is forcing me to run a ten minute mile and I collapse? I don't know the answer. I really don't. I'm not looking for comfort here, but any of my disabled mutuals (I know there's at minimum two of you) feel free to weigh in. I'm not an expert. also big disclaimer that my mom was disabled (which is why she died) so maybe my understanding of the world is warped as a result of that.

[thestobingirlie]

hey, i just saw another migraine fic, and i'm annoyed, so. i hate how so many people portray steve's migraines. like, steve has only been shown neglecting his own needs in situations where others are in danger. it doesn't make sense to have him ignore his own migraine and go to work. and having him not know what to do for his migraines, that in most stories he's been having for years, just to have eddie or robin or whoever know exactly what to do to take care of him, is obnoxious. as someone w chronic migraines, you figure out what works relatively quickly. and there are meds you can take, that you have to take daily. but, let's say meds don't work on steve in the fic (bc same), he would still know exactly what he needs to set up and do before the migraine gets too bad. or he would have things prepped nearby for if he wakes up w a really bad one. it's more than just laying in a quiet and dark room. personally, most sensory input makes my migraine worse. steve may not be able to decrease the overall pain level, but he can certainly do things to stop it from getting worse, things he would know to avoid. also, some people have specific things that trigger a migraine that steve would learn about himself and would know to avoid. and he could have auras, which are an indication that you're going to have a migraine, which can come with vision issues, confusion, muscle weakness, and so on, but don't commonly last for v long. which i don't think i've ever seen either of those things in a fic. i'm just tired of seeing steve forcing himself to do stuff with a migraine (the singular type of migraine that those people write about) when he would know his limits and would know how to help himself. though people writing about how other people know what to do instead of steve, does reflect a common real-life experience of people acting like they know your medical stuff better than you know yourself, as if they're the ones experiencing everything. steve is shown to be capable, let him be capable when he's dealing with his disability.

i cannot see steve pushing through a migraine to clock in at family video lmao.

i do think that steve is the kind to push past injuries to help others, but only when he’s helping them. if it’s just everyday life, i don’t get why steve would ignore issues and put himself in more pain just to… work?

yes! let steve be capable. so much of fandom just takes steve’s agency away from him and it isn’t good. let steve control his own life, and illnesses, and his own disabilities.

[kitschykarcass]

On Pain

8/12/24

I have read parts of The body in pain by Elaine Scarry. What I did read was beautifully written and very insightful into the way pain functions as an aspect of human society. I think about pain a lot. It was nice to read something written by someone who also thinks about pain a lot.

Not to go full standpoint epistemologist but I do think there is somethings that people with chronic pain will understand that people who live their day to day without pain just can’t. When your body is always screaming at you that something is wrong, you have to listen. I can think of few worse feelings in this world than pain that is both impossible to work through and has no end in sight.

I experienced that kind of pain recently and it was terrifying. It started as a migraine last Monday. I thought I just needed to sleep it off. That didn’t work. Then I thought I just needed to try heat, ice, compression, avoiding screens, and sitting in a dark room. None of those worked. By Wednesday, I couldn’t think about anything except for the pain and had to leave work.

I thought I just needed to take a hot shower and sleep. Neither of those worked either. Finally, I decided it was time to go to urgent care. When I told them about my then 3 day long migraine that was effecting my vision, I was told to go to the emergency room.

This was bad news because I hate the emergency room. Not that anyone enjoys the emergency room but being a chronically ill and disabled person adds another layer of hell to the experience. The whole time I was not only worried about my physical symptoms but also my long history of medical trauma.

It feels like I have just now started to get a handle on my anxiety. Going to the doctor doesn’t make me feel like I am going to die anymore. I knew that this work could be easily undone by one negative experience. Thankfully this did not happen. All of the providers I saw were very understanding.

It was honestly odd to have my pain believed so easily. I didn’t have to reexplain myself and say the right words to be believed. The pain scale actually worked in communicating what I needed to say.

I eventually got some meds, fluids, and a CT scan that showed there is nothing structurally wrong with my brain. I was feeling better and ready to go back home convinced that I all I needed was a good nights sleep.

Unfortunately, this assumption was wrong. The pain only got worse and my vison was not improving. I ended up going back to the ER on Saturday night because I needed the pain to stop.

This brings us back to The Body in Pain. A quote from the book that I hear quite often is “to have great pain is to have certainty; to hear that another person has pain is to have doubt.” I am thankfully feeling much better now and reflecting on the pain I felt over the past week. Even having experienced the pain first hand, I still have doubt. I have doubt that it was actually as bad as I think it was.

Pain is a hard concept for me to wrap my head around. I don’t like things that can’t be quantified and I can think of nothing harder to quantify than pain. Because of my OCD, I live with the consent fear that I am somehow lying to people. Right now, I am afraid that I somehow lied to the providers I saw about my pain.

The funny thing about OCD is that it isn’t even really worth going down the rabbit hole of why that line of thinking is wrong. It simply does not matter that I have experienced chronic patellar dislocations since I has in preschool, have had 6 knee surgeries, and have abdominal pain so severe that I am afraid of food. No matter how much evidence I have that I can handle pain, my brain will call me a lair.

So here I am now, terrified that I somehow wasted the time, energy, and resources of ER for something stupid. I know that someday I won’t feel this way. I look forward to that day.

I also look forward to the day that I am able to feel anything but anger at the fact that I experience pain 24/7. I do not believe in any sort of objective morality. This is comforting because while the pain is unpleasant, I do not believe that it is morally justified. I am in pain because pain is part of existence. I am in pain because I exist.

-Karli

[cliveguy]

the notes on that ibuprofen post are kind of funny bc it's british people going "well if u can buy more than a single pill at a time ur going to kill yourself and destroy your stomach lining and become slaves to consumerism" and americans going "it's the only healthcare we have (unlike your perfect and functioning nhs) and ibuprofen has 0 health detriments i take it whenever i feel anything at all and im fine :)" maybe . there is a happy medium.

[3liza]

speaking of balding, wondering if you have any aesthetic advice for ladies with hair loss, esp. in the typical "male" style (thinning temples and rising hairline). I'm 30, generaly negligent and apathetic doc says my bloodwork looks fine, no PCOS, low progesterone apparently. Scared to try rogaine because I already have insane facial and body hair that $1000s worth of electrolysis did not do much to eradicate.

Should I just commit to the shaved head & occasional wig for the rest of my life? Honestly considered transition lol but not feeling great about being a schlubby dude instead of a schlubby woman. What is the best aesthetic path? Primarily asking bc I deeply trust ur taste and opinions.

standard disclaimer, im not a doctor or a medical professional and all my advice is coming from a civilian without any credentials and is based solely on my own personal experience, observations and research.

since you mentioned doc said no PCOS i will assume youre AFAB, please correct me if i'm wrong since it does make a big difference with hair loss. lots of body hair + lots of face hair + male pattern baldness for cis afab women almost always means either PCOS or a similar hormonal issue. before trying anything else i would try to get a second opinion from a gyno and/or endocrinologist. because your doctor sounds like an idiot and also incurious and may also be reading your labs wrong or may have ordered not enough labs or the wrong labs. if nothing else i would try to get someone else to look at the lab results.

i dont know enough to tell you exactly which labs you need, but sometimes doctors are like fucking computers and will not actually perform the correct actions until you find the exact right way to phrase your request. in this case i would say to the doctor, firmly but politely, "my symptoms are hormonal and include male pattern baldness, hirsutism, and [anything else you think is relevant, including if you are above average height or weight, have a weird metabolism, and any menstrual pain or irregularities]. these symptoms negatively impact my quality of life and i am not willing to ignore them or just live with them. if my hormone levels are all normal, what else could be causing these problems? we need to test for those diagnoses. if you are not interested or qualified to pursue this issue for me, please refer me to a gynecologist or endocrinologist who can."

really punch that these issues are negatively impacting you and you arent able to function normally. feel free to "exagerrate" this part too, because when we live with chronic conditions we genuinely lose the ability to tell exactly HOW BAD things have gotten, because we get used to minimizing it and just going about our business, and doctors are almost never chronically ill and sincerely dont get it. they dont understand the complexity of subjective suffering.

a lot of doctors default to "the patient isnt actively bother me about this so they must not care that much" and theyre also really busy and will triage anyone who isnt actively getting their attention. don't let the appointment end without the doctor telling you exactly what the next step is and when it will occur, whether it's a lab order for tests, a day that someone will call you back or message you on MyChart, or a referral to another doctor. you are entitled to this information and care.

i think getting this medically checked out is of primary importance because it sounds systemic and not just about hair, but all the basic hair drugs are available on the grey market for not too much money. they all have various downsides but dutesteride and finasteride are both easy to get and try for yourself if you feel like it.

edit: i got so mad about doctors i didn't even answer your question. i think if it were me in your shoes (which it probably will be someday, like i said in the other post, hair loss comes for us all), if doctors and meds didnt work or didnt work well enough, i would probably shave my head and get some wigs for days when i didn't feel like being bald. there are GOOD, cheap wigs these days (haircube is one brand people really like but there are tons). and bald women look incredible

[thespianinthebackcorner]

Kanrnsjfbenidrbs thank you!!! I'm writing a fantasy, so naturally the character in question is a dragon (sort of.) His name's Emruss and he's like a little mishmash of a bunch of stuff I like (he's not the author's pet, though, that's someone else 😂)

He's a dragon made of crystal. Although I haven't finalised everything it does to him, he's grown up with a chronic (and eventually terminal but we're not supposed to know that until later) illness. It's a family thing, although he's the only one out of his surviving close family who hasn't given up on finding a cure- despite the fact that he already has mobility problems and asthma from it.

Despite all that, he's an optimist, and tends to repress his negative emotions. He's the type to think he's only wanted by a group because he's funny and thinks he's a liability, so keeps up a façade of happiness. It's not totally fake though, he loves his crewmates (they're on a pirate ship) and is especially fond of the two kids onboard. Think Olaf from Frozen or Bennett- that's how he acts most of the time. Of course, his doubts are almost entirely unfounded, the rest of the crew loves him and want him to succeed.

He actually used to be fairly magically powerful. Still, his condition drains his strength, so in a last-ditch effort for survival a year or two ago, he attempted to transfer his consciousness to something else- a nearby animal he'd be able to stay in and regain his strength for a while. He misaimed, and ended up inhabiting Arvi, a teenage human who was incidentally nearby trying to confess to his crush. Instead, because I cannot let any chance to hurt a character slip by, cue the very painful instance of two sentient souls trying to share one below-average-height human body. Thanks to that mishap, Arvi gets badly injured and exiled from the little town he's been staying in. Trying to cut down on the ramblings here because Arvi is very much the author's pet. Timeskip a few weeks and the pirate captain Lally has taken the two of them, plus Tarakini (Arvi's crush who he never got to confess to and also has a crush on him but won't say it for another like year because hahahahaha impostor syndrome) and her little sister Falisha (who is basically Klee with less explosives and more curry.)

Emruss is chatty by nature, (unless it's about his feelings) and likes the rain. He has a secret dream of finding a boyfriend and raising a family, but because his condition runs through family lines, he's committed to healing before even thinking about a family, much as he wants it.

Since he's sharing a body with Arvi, they switch over control periodically. Sometimes Emruss will try and imitate him for kicks, but you can always tell because of the way his illness is so much more present- he tenses up at random moments, gets short of breath really easily, and sometimes has asthma attacks, among a few other things. He's taking meds (prescribed by Dr. Mal Pracktisse, the ship's goblin doctor) to stop the coughing and a few other symptoms, but every now and then it'll be Arvi who's in control when he's supposed to take them and both of them will end up with a bad fever for a while.

As of the start of the story the boys are (mostly) peacefully cooperating, and he greatly respects the captain Lally. Of course, that will change, and this specific novel does have the happy ending tag, so don't worry about him. There might be one or two near-death experiences, but... He'll be fiiiiiine...

crepe whenever a character has a chronic illness that impedes on almost every aspect of their character and life in general

[sepublic]

Marcy’s Condition

           I’m scared for Marcy. Seeing her so wounded, I just-

           I really am afraid. Afraid that she’s going to need not just emotional and mental therapy, but physical therapy as well… Which, we don’t know how successful Andrias’ procedure is going to be, but still. It really sucks and haunts me how Sasha has that scar on her face, as a permanent reminder of what happened in Amphibia, of Reunion…

           But not to compare pain, but Marcy is somehow even worse- Because she might just have that ENTIRE gaping scar on her chest and back, and… Remembering how she almost died, how she THOUGHT she died. The pain, the unimaginable horror and agony at being impaled. The reminder of everything that happened in True Colors, the pain and desperation, the betrayal… I can legit seeing it become an actual, medical trigger for Marcy. Sasha at least managed to cope with the scar on her face, good for her…!

           But Marcy… I can easily see this breaking her. And it just leads to her always trying to cover up that scar and not look at it, which, is easy because she can accomplish that with any regular shirt, but still… It’s just the entire concept of bodily autonomy being violated, of being marked like that, and it worsens with the idea of Andrias turning Marcy into a cyborg, and/or his master possessing her. To already have her body so grievously hurt and wounded, to then be operated on like a test subject, to be controlled and puppeted with this entity inside her… It genuinely sickens me.

           This girl suffered, and there’s always that permanent, visual reminder of it. At least with Sasha, you can argue how she brought it on herself, as a reminder of how she tried to kill Anne’s surrogate father and why this mistake backfired; It’s a learning experience, although trauma is trauma of course, so that is to be said VERY lightly and carefully. It’s not like Anne MEANT to scar Sasha; But Marcy… Marcy didn’t deserve that. She didn’t deserve to be impaled by someone she trusted, who took advantage of and manipulated her… 

          She was afraid of confiding her fears in with Anne and Sasha, and she found that in Andrias; And now, she’s likely to be even MORE terrified of opening up because of this! Especially with how Andrias has the AUDACITY to literally gaslight Marcy in her final moments, as she realizes she’s going to die and is dead, by saying “Look what you’ve made me do.” As if he hasn’t emotionally manipulated her enough, to imply Marcy’s violent death is all her fault, and/or that of the friends she loves and didn’t want to lose, was so afraid of being rejected by. Because I guess her soul hadn’t been crushed enough!

           Not to mention… Getting impaled like that, having a burning blade through your spine… I’m just really afraid that when this is all over, IF Marcy gets to recover and heal; She might be paralyzed. She might be plagued with physical health issues for the rest of her life, because she’s missing an entire chunk of her spine; And, hopefully Andrias’ procedure can give Marcy’s body a full recovery… Ideal scenario, no scar, even! 

          But I can’t help but feel like being possessed by Andrias’ master, THAT could leave its own physical toll on Marcy’s poor body, and it just agonizes me to see this girl be violated like that, emotionally and physically. It’s depressing how Marcy briefly treats others more like NPCs in her game than people, because now SHE’s being objectified, losing her agency, in a way that is so much worse and totally undeserved.

           Marcy doesn’t deserve to have to live with physical health issues for the rest of her life, for what happened; She’s a kid. She doesn’t deserve to be plagued with echoes of pain and physical trauma that constantly remind her of what happened, even when she’s not directly looking at the visual mark it left behind. And I’m just scared that when this is all over… I can see Marcy being bedridden, being in ACTUAL medical therapy, because I have a hard time imagining her being able to function without that.

           What if she becomes physically sick and ill, still feeling the repercussions of her wound or possession or being modified against her will? I don’t want to imagine Marcy looking at prosthetics that Andriasgave her, for the rest of her life. There’s nothing wrong with needing physical aid, or medicine, or therapy to get by in life; But for Marcy, it could serve as a reminder of issues that came as a direct, unfair, result of her time in Amphibia; A loss of carefree health she once had… And she doesn’t deserve to be haunted like that.

          I don’t want Marcy to be plagued by health issues, she’s gone through ENOUGH already, having the rest of Marcy’s life be permanently riddled and restrained because of her wound, it just… It genuinely leaves me in anguish. I don’t want to see Marcy in a wheelchair, as a permanent, haunting reminder that is intertwined in every aspect of her life, of what happened… A reminder she literally can’t escape because it’s her own body, and it’ll affect just about every breathing moment for her.

           I don’t want to see Marcy struggle to breathe from damaged lungs. Or have her struggle with meds –I know that feeling- or constantly need a device for physical aid, something to be hooked up to often. I don’t want to imagine Marcy sometimes lying in bed at night, placing her hand over her chest, so she can feel her heart beating, to relieve and reassure herself that she’s still alive. Not after feeling her heart stop beating when she was first impaled… She’s so young, she has her whole life ahead of her, or should, and she had that violently ripped away from her, barely got to live with that kind of normal life before it was gone for good. She deserves to just breathe, carefree, and feel the sunlight on her face and enjoy life.

           As a disclaimer, I don’t want to patronize people with disabilities or injuries. I don’t want to turn physical conditions into some inescapable tragedy that can’t be moved past, can’t be healed from; There are so many people who have managed to adapt and continue living as always. I’m sorry if I did that… But Marcy’s whole condition could be a brutal reminder of what happened to her, of that horrible thing that wracked not just her heart but her entire body. She shouldn’t have to suffer for that, for the rest of her life…

           And I’m terrified for her mental health. Of her suffering from actual PTSD, being triggered by things that remind her of that moment. Of having nightmares and waking up in a cold sweat, heart racing, as she reaches out for Anne or Sasha for comfort. I can’t handle that thought, the idea of a kid in that sort of pain… It’s so unfair and she doesn’t deserve it. I can genuinely, plausibly see Marcy becoming depressed, becoming somber and morose for a long while, before she can finally heal and become happy and excited and curious in things that open way she does; And GOD, I’d be inconsolable if she felt suicidal, because how do you move on from that? Thinking her life wasn’t worth it without Anne or Sasha, that she literally can’t handle it… Combined with the possibility of abuse in more ways than one from her parents, how THEY won’t help, if they’re even allowed near Marcy after all this.

           Does Marcy have anyone to even turn to when it all ends? I hope she does. I can only imagine her being constantly terrified of being alone, and needing company just to get by… She really deserves a therapy pet after all this, maybe Joe Sparrow could help. It just… It just sounds like Marcy’s whole life has been wracked with this kind of pain, and I don’t want to her pain get any worse, to see it get physically chronic. Any kind of physical pain could easily traumatize and push Marcy to her limits… And, there’s the possibility of good representation for physical disabilities, but also, I don’t want to patronize anyone, or speak over their voices, so again I apologize if I did.

           I guess this just stems from me wanting to see Marcy’s pain be acknowledged and addressed so she can properly heal from it, can be validated and told that it was terrible and should’ve never happened no matter what… But maybe I can find relief in the denial that it didn’thurt her this badly, that Marcy is fine and doesn’t have to deal with that to begin with, because wouldn’t that be better for her? I dunno.

           It’s undeniable that Marcy is going to be emotionally crushed after this… But does she have to stay, or become, physicallycrushed as well?

I just…

           SOMEONE GET THIS GIRL SOME LOVE AND CARE AND THERAPY ASAP FOR THE REST OF HER LIFE AND LET HER BE WELL AGAIN!!!!!

           I just want Marcy to be able to recover and heal… I genuinely hope and wish her emotional spirit will at least be able to move on after this, that she can still find joy and excitable fun, and get to be a kidagain, with her best friends like old times; Only better, because she’s at least grown. God, these girls and their trauma, and the inevitability of how it’ll haunt and hurt them… It leaves me inconsolable.

[sendskissestobroadway]

hi so once again i am turning to tumblr bc idk what else to do

need some chronic pain related advice so if you can relate or know someone who does please read below

little background about me: i've had chronic pain for almost two years now, and still no solid diagnosis. different things have been thrown out there, but a lot of the tests i've had done have come back negative, not significant, or inconclusive. the only thing that was ever yes yes definitely positive was a mri of my thighs that showed inflammation. however, a couple months later when i had a muscle biopsy of my thighs done, they ruled it not significant, and it didn't point to a further diagnosis. my rheumatologist decided to put me on prednisone anyway, and it HELPED SO MUCH. at least temporarily, i'm tapering it now since it's not good to be on long term. but it helped with my energy levels and my pain/numbness/weakness/tingling/burning/tingling pain in my lower body. i definitely couldn't have finished college without it.

recently, i was put on lots of different meds, and i've been have a bad flareup and new weird symptoms since the beginning of the summer. i also started using weed to help manage pain and fatigue and it helped a lot. however, because i've had so many new (and some very severe) symptoms and couldn't tell anymore what was a side effect and was a symptom, i decided to stop/taper every medication/drug that i could about a week ago (with my PCP's help). i'm still adjusting.

however, the thing i'm probably most concerned about rn is my new neurological symptoms that have been progressing. while i've had things like sensory issues or brain fog in the past, it's taken such an intense turn to the point that i'm pretty sure i've started having seizures? i hesitate to say that in case i'm wrong but i've been having them a lot. since stopping my meds, it seems to be helping slightly. my brain doesn't feel as overloaded. but i'm still kind of having them. i did go to the ER for one after i had an episode in the urgent care waiting room, and they did a CT which looked fine. they diagnosed it as a "headache" and told me to call my rheumatologist to get off my mycophelate mofetil since they thought it was contributing (and i think it definitely was, especially to my digestive system issues, brain fog, and weird random i'm so sad but idk why mood swing things).

i guess my question is, for people who have had seizures start developing later in life, how did you know it was a seizure? i mean i've looked up stuff online so i'm pretty sure but of course i can't really be sure. and how do you manage seizures day-to-day?

also, for people with chronic pain in general, how do you get people to believe you? i just feel like everyone is starting to think my pain is psychosomatic, which i think of course, some of it is. everyone experiences psychosomatic pain sometimes, and i do have a history of mental illness. but i actually feel pretty good right now!! and i'm doing everything i can to limit my stress, pay attention to my body, give myself positive affirmations, rest, do some gentle movement throughout the day, sleeping a lot (8+ hours usually) on a regular schedule, trying to eat a decent diet, meditate, stretch, i mean, i am really trying everything i can.

but i just don't know what do sometimes. so any advice, especially from other people with chronic pain, is super appreciated. and thank you for reading all of this if you did. i hope you are having a wonderful day!! here's to the lovely journey of becoming closer and more loving with our bodies.

[probably-enjolras]

r.e. disabled les amis headcanons: omg please add yours

yay someone wants to hear mine! some of this will be projection on my part. i’m disabled myself, i need a cane to walk because of a condition called Amplified Musculoskeletal Pain Syndrome (AMPS) which is very similar to fibromyalgia. i’m also going to include some neurodivergent and mental illness headcanons, but i know some people don’t consider those disabilities, but from my own experience with them, i do, so that’s why i’m adding them!

jean valjean has chronic back pain, specifically a problem with the discs in the upper spine, from his time in prison. gradually gets worse as he gets older because of lack of treatment and him triggering the pain himself by lifting the crashes cart and then marius in the sewers. in my modern aus i like to think he gets an upper back/neck and shoulder brace that he wears, and he’s a bit insecure about it so that’s why he’s always wearing big coats even in aus where he’s not being pursued by javert

javert, marius, and enjolras are autistic. javert has known most of his life but marius wasn’t diagnosed until his late teens due to lack of familial support. enjolras would have been diagnosed as a kid but he’s afab and there’s lack of diagnosis for afab children and he doesn’t get diagnosed until he’s in his 20s after doing his own research.

enjolras, grantaire, courfeyrac, and bossuet have adhd. enjolras and bossuet have more hyperactive traits, enjolras’ manifesting in his need to constantly be doing something and chronic boredom, while bossuet doesn’t display his as physical hyperactivity but more racing thoughts and an inability to slow his mind down. courfeyrac and grantaire have more attention deficit issues. they can’t focus on one topic for a while unless they go into hyperfocus or it’s a hyperfixation. grantaire has a lot of self worth issues because of his adhd because growing up he was seen as a bad student and a bad child because of his attention issues and executive dysfunction. courfeyrac got medicated really early on in childhood. enjolras did too and it becomes a bit of an issue between him and grantaire because grantaire doesn’t start medication until he’s about 24 and enjolras has been on medication for a long time and he’s kinda forgotten about how difficult it can be being unmedicated so he thinks grantaire isn’t trying enough. that changes when the pharmacy won’t refill enjolras’ medicine and he has to go a week without it. it’s a really humbling experience he apologizes to grantaire once he’s back on meds (this is based on personal experience actually… i didn’t start meds until a few months ago and i had a friend who started meds in middle school do what enjolras did and ur sucked)

joly had to get his knee joint replaced through surgery and still can’t walk properly without pain in the area so he walks with a cane. he also has an autoimmune disorder that makes him get sick really easily, as well as chronic fatigue and brain fog that makes it hard to complete daily tasks even when he has a low pain day. he also has very bad anxiety that sometimes manifests in worrying about his health excessively and vigilance about staying healthy because he knows that if he even gets a cold, it will be worse for his body than someone without a chronic illness

cosette and eponine both have c-ptsd from living with the thenardiers, and i have so much to say about this that i’m thinking about making an entirely separate post about it. just know that both of them have trauma responses, with cosette becoming very docile and a chronic people pleaser because she doesn’t want to get in trouble even though she won’t be punished like that anymore, while eponine has become hardened by her trauma and puts up walls so she doesn’t get hurt. she also gets frequent nightmares about her siblings being hurt and wakes up sweaty and almost screaming. gavroche came home late one day and eponine was on the verge of a panic attack even though it had only been half an hour

combeferre is blind in one eye and his other eye is partially damaged so he doesn’t have very good depth perception in what he can see, and he also has very limited color vision

feuilly is deaf and grantaire is HoH. feuilly’s primary form of communication is sign language, though he can lip read but not very well. all the amis know basic signs like how to ask if he wants some water/food, hellos and goodbyes, and how to sign their names. once feuilly becomes close with them, he creates signs specifically for their names, which at least in the american d/Deaf/HoH community is very special. a very close family friend of mine is HoH and he gave me a name sign when i came out as trans (it’s a quick movement of the letters R and Y up in the position where male signs are signed like “father”) grantaire is hard of hearing and has hearing aids. sometimes when he fights with enjolras he just takes out his hearing aids and just lets enjolras keep going until he realizes what’s going on.

this next one is very personal to me and is something i don’t think i’ve ever seen before, but i hc jehan with having schizoaffective disorder (bipolar type). i personally have this disorder and i have found some comfort thinking jehan has it too. they started having mood symptoms first, which started as a depressive episode and then suddenly they felt like they had been shocked into a manic episode. once the mania started they began having delusions of grandeur and the belief that they were a prophet sent to help the world. they began thinking people were after them and they heard voices from “angels” telling them what to do. they started writing poetry as a way to get the voices out of their head and onto paper. it took two years to get a diagnosis and a some very rough nights where they weren’t sleeping and would show up to meetings with delusional ideas, and they were scared. they refused to go to the hospital but needed help, so grantaire took them to the community out reach center that he goes to for alcohol addiction treatment and jehan got a psychiatrist who started them on antipsychotics and a mood stabilizer. i like to think that jehan got better quickly, just because i’ve had this disorder for a very long time and i’ve tried almost every antipsychotic out there and im not really better, so i want them to not have my experience. they were accepting of treatment pretty easily, but they did worry that their poetry wouldn’t be the same afterwards. fortunately, they channeled their frustration into poetry as opposed to writing what they were hearing and even though their poetry changed once they got on medicine, they didn’t lose their ability to write it. they’ve also learned how to have confidence in themself and the revolution without becoming delusional, which did take time because hearing enjolras’ strong ideas, it just felt like too much for a while. but the longer they’ve been stable and connected to reality, the easier it becomes to believe that yes, some things may seem improbable, but they can still happen AND some ideas are delusions and can be differentiated between the improbably ideas

bahorel has hypermobile joints and has to be careful when boxing with grantaire because he has subluxed or even fully dislocated his shoulders, elbows, and finger joints while boxing. jehan bought him some colorful finger braces and has stitched patterns into his knee and elbow braces

that’s enough for now because this is getting really long but yeah. lots of projection on my part (whoops) but what is this blog without me projecting my issues onto les mis characters? is this not what this blog is based on 😂

[chaosdisorganized]

I don't deal with chronic pain, I am only in a lot of pain on my period, which is so bad I can't do anything, it hurts from the waist down and I think it may have grown to my colon... I have had people getting upset with me, only causing me to feel worse, when god forbid, for a week out of the month, all I can do is sit in bed and get stoned because my pain meds don't work and it feels like someone is twisting my tendons and muscles from the inside... I have a job developer who is super pushy about deadlines and most of the time I am on top of it, but on days where I really need to be productive, its frustrating because that tends to be when my period starts..(I suspect I have endo and my doctors do too, I have a procedure next week I need to prep for relating to it...I can't take birth control because repressing my period represses my digestion... I have IBS symptoms with my endo..) How do you cope with folks acting like you are "making excuses" and "being lazy" when you are in pain? I feel guilty for being in pain and needing rest... I will not have something done by a deadline and sent a lengthy defensive email to my job developer about it. I am exhausted. I can't imagine how awful it must be to be in pain all the time, from the first till friday kicked my ass with pain. (I can only imagine what you deal with... My mother had chronic constant pain; 2 ruptured discs in her back, foot neuropathy, migraines, etc. Still doing 90% of the household chores regardless. I can't even fathom that. I think my pain might be genetic somehow...) I take strong pain meds and cannibus to cope, it takes me from a 10 to a five. Any tips on how to get others to understand, and being patient with yourself? My period got significantly worse after my mom died... I think trauma also causes inflammation and chronic pain and even ulcers in the body, so stress is no good, but i get stress about disappointing everyone. People are not very empathetic if you need to miss work or school for pain.... How do you get folks to understand?

Unless someone experiences it themselves they won't understand, unfortunately. Sometimes if im having a really hard time with someone not respecting my limitations ill do theatrics and act like im in more pain than I am (I have a high pain tolerance so a lot of times I can be in really bad pain but hardly making a face) groaning, crying, screaming, flinching, I just let it out. Usually that works. It's not an easy thing to cope with, I've spent my whole life being gaslight about my pain and people think I use it as an excuse to get out of things or being lazy and really fuck em. I'll tell them "you not believing me doesn't make my pain any less real" people seem to think if they don't believe you then you'll magically be cured for some reason? Idk. What's important is that you believe yourself, only you know your own reality. If your body is telling you you need to rest you gotta listen to it. If it's telling you to slow down, slow down. It's important to listen to your body because it will tell you what it needs, and in turn what you need. People won't ever understand until they're old and disabled from age. I know the feeling of not wanting to let people down, but those people gotta know your wants and needs come first. You have limitations and if they can't respect that then that's on them because your limits aren't going to change.

One thing I find really frustrating is how people expect you to get better and to find a way to do so. I can't take ibuprofen or acetaminophen because they make me sick and sluggish. Everytime I complain about pain it's always "take a tylenol" honey I can't take tylenol everyday nor are you suppose to. There's no way to make people understand, you know your truth and if they don't get it for whatever reason then fuck em. What they say doesn't change your truth or reduce your pain. You just gotta tell them to take it or leave it because it's not something you have control over and you can't push yourself past your limits, that'll only make it worse.

I hope that helped at least a little. I'm really tired and dissociative so I'm not thinking optimally.

[rotationalsymmetry]

trying to figure out if “there should be spaces for people with physical disabilities only, not mental illnesses” actually makes sense. I mean, in general subgroup spaces do make sense, but… “physical disabilities” as one of those? Idk. I mean, when I want CFS specific stuff I look for CFS specific stuff, when I want spoonie stuff I have words for that, when I want to find other people with chronic illnesses as a general umbrella term I can find that. People with chronic pain can find that, people with mobility issues, people with vision impairment, etc. But a category that includes paralysis and blindness and arthritis and hearing impairment and dwarfism and missing limbs/amputees and chronic fatigue and back pain and idk, food allergies maybe (that’s a physical disability, right?) but doesn’t include depression and autism and borderline personality disorder? How is that a meaningful distinction? Why do Deaf/deaf people and wheelchair users intrinsically have something in common that people who have psychotic episodes do not? I’m only seeing that as a meaningful distinction if you see the first category as real and the second category as fake. Because, sure, using a cane is different from being too fucked up to go to school or work unless you get your meds, but I mean using a cane is also completely different from being deaf but being able to walk fine, or having an unpredictable digestive system but being able to walk fine, or any number of other things that are in fact physical disabilities. (Or having so much fatigue you can’t get out of bed — technically a mobility issue, but with a very different problem set.) And if you just want people who need mobility aids to get around, that’s a completely different category from people who are physically disabled.

I am saying this as somebody who is physically disabled.

As someone who is physically disabled now and was mentally ill for some time before that. You bet there were things I missed before I had a physical disability. But I think that had more to do with not seeing mental illness as a disability than with assuming I understood physical disability because I had personal experience with mental illness. I mean, certainly now I am extremely conscious that disability is a vast spectrum and no one disabled person has all the disability experiences. Even within my chronic illness, there are vast differences in experiences between different symptom sets (I don’t have chronic pain, many people with my illness do) and levels of severity. It’s not so much that people with mental illnesses only don’t know what it’s like to have a physical disability, it’s that they’re all different from each other. I don’t have any special insight into being blind.

it makes sense for anyone who’s using “needs a mobility aid” as meaning the same thing as “physically disabled”, except for the fact that that’s blatantly nonsense and “mobility impairment” is a term.