#Chronic Hope

[atouchofflourish]

Being transformed in Christ is lifelong

As I’m pulling weeds, planting flowers, and transplanting ground cover today, I’m reminded of John‬ ‭15‬:‭1‬-‭5‬, ““I am a true sprouting vine, and the farmer who tends the vine is my Father. He cares for the branches connected to me by lifting and propping up the fruitless branches and pruning every fruitful branch to yield a greater harvest. The words I have spoken over you have already…

[hinamie]

to moving forward

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[chronichopegoby]

Goby, Pastel and Gigabyte!

Gotta love these three

[i-say-stupid-things]

psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.

you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that

[giantkillerjack]

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

[plain-text version of this post can be found under the cut]

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

Plain-text version:

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

P.S. Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

[chronicpaingirlie]

good morning disabled people i love you all btw

[thebibliosphere]

I'm writing a bigger post about my experience with the new PT yesterday (my head's still full of fog), but aside from being a generally positive experience where my pain was kept to a minimum and she let me guide the intensity of the session, it was also a relief to finally be around someone who understood EDS and wasn't afraid to explicitly roll her eyes at the gatekeeping that goes on with diagnosing people.

We talked briefly about how POTS isn't officially in my health partners file because I "don't meet the criteria" (diagnosis requires a change in the heartbeat of over 30bpm. Mine presented as 29 the one time they tested me while I wasn't in a flare. lol, lmao even.)

But specifically, we were talking about how I don't always present as typically EDS either because I've grown increasingly stiff in parts of my body, and without missing a beat, she said, "Of course you are; pain stiffens the body. It's an inflammatory response."

Like it was the most obvious thing to her and not something I'd need to hedge my way around explaining lest I become An Annoying Patient.

She then went on to detail how a lot of patients referred to her by rheumatology for fibromyalgia are actually hypermobile and are likely good candidates for hEDS screening, but because they're "stiff," they're being missed. But it's not like you, a lowly PT, know better than a rheumatologist (who shouldn't really be diagnosing EDS because it's not a rheumatic disorder), so the patient goes on not getting the full extent of the help they need.

And I remember how it was taking everything in me at that moment to just not to just cry with relief because oh my god. You. You get it.

[thedisablednaturalist]

Literally all the shit rich people have turned into luxuries are stuff many disabled people need (or would need to manage their pain but can't afford it)

Comfy ergonomic chairs

Indoor pool/hot tub (therapy bath)

Massages on the regular

Aides (rich people call them servants)

Yea even a cook who makes you special meals (perfect for people with special dietary needs and for those with severe allergies, as well as people who are in too much pain or are otherwise unable to cook)

Elevators in your house (even small ones just for groceries, my rich aunt has one in her beach house!)

Rich people don't buy these for fun I hope but custom powerchairs are obscenely expensive. It pisses me off when I see another person invent "the wheelchair of the future!" Which then is literally never fucking used because none of us can afford it (and insurance definitely won't pay)

Indoor gyms or even personal exercise equipment. Hard to go out to a gym somewhere else when you're disabled, especially if you are immunocompromised

Outdoor spaces to relax in. It's literally vital for your mental health to at least see the outdoors. I'd rather be bedridden in a sunroom (with retractable blinds) than a shitty apartment with one tiny window.

There's even freaking health retreats these people go to regularly. There's a fibromyalgia retreat in new york where they basically take care of all your needs while trying different treatments and seeing which ones help. Either it's heaven or making money off of scamming desperate people who are able to scrape the money together to go.

Private planes, which I honestly think shouldn't exist, but one that specifically catered to people with disabilities (spaces for wheelchairs/other mobility devices, accessible handicapped airplane bathroom, anxiety reducing tools, trained medical personnel and care team)

Also customized cars, except instead of making gas guzzling racecars to joyride in while everyone else is trying to get to work, cars with electric ramps, lifts, doors, cars customized for someone with limb differences. Those cars where you can roll your wheelchair right up to the wheel. Fuck even self driving cars once they are no longer deathtraps.

Skincare products that are safe for sensitive skin like eczema but also actually work

Nice-looking clothes customized to fit limb differences, access points, look good in wheelchairs, colostomy bags, etc. while also being comfortable and not fast fashion.

Dental care!!! What the fuck why is this shit so expensive!! I don't want my teeth to fall out!! (Disabled people usually need more dental care bc we have a harder time keeping up maintenance)

Rich people go and splurge on all of these even though they don't need them while calling disabled people selfish for begging their insurance for even one of these.

[redysetdare]

I don't think a lot of people realize that lot of their advice to disabled people often boils down to "Get over it." they are trying to be helpful but their idea of helpful is "Just do the thing" because that's what they do. for them they just do things. It comes naturally to just do it.

They don't know how to bridge the gap between you and the task. For them the bridge is already pre-built and stable. For disabled people the bridge is run down, not well kept, it feels unsteady and is hard to get across without being slow and cautious - hell for some people there is no bridge and we need to build it ourselves but we don't have the bridge building tools and no one gives them to us.

"Just cross the bridge." They say before walking over their pre-built bridge. They never gave you the tools to build a bridge to cross.

[21stc3nturyd1gitalb0y]

i think one of the reasons punk means so much to me is that under the spikes and studs and safety pins is the same kid who sobbed violently every time he got in an argument, a kid who cared so much about the people around him that he kept asking questions. kept trying to make sense of things, even when it started to alienate him, because it wasn’t a simple disagreement to him, it was his whole life. something was fundamentally wrong with his brain that made him incapable of understanding the world the way the people around him did, so he was seen as selfish when all he ever wanted was to make everyone happy. and maybe when that kid grew up, he still had questions, and he never stopped trying to understand the world a little better. but he was also going to realize that he was never broken; he was hurt by a system that was. but he wouldn’t stop fighting for change, to make it a hell of a lot better for the other misfits and outcasts who felt like there wasn’t a place for them. he was going to stop caring so much how he was perceived for expressing himself and he was never going to let anyone make him feel like he didn’t belong. ever.

[atouchofflourish]

Talk the Talk, Walk the Walk

When I think back to being invited to our church’s leadership meeting in 2022, I can feel the excitement all over again. I can remember Micah and I half joking about how we weren’t sure if our pastors meant to invite us. I was nervous and excited to be a part of whatever these meetings consisted of but I also felt that being included in leadership would require a heart posture that was open to…

[noagskryf]

Do people not understand that even if someone was surrounded by money and food and water and clothing and shelter, if they physically cannot feed themselves or dress themselves, they would die? Because i feel like some people think that the Great Solution is eradicate poverty and not "accept that some disabled people do rely on constant care and no amount of resources can substitute the need for human help"

Obviously poverty and inequalities in society make it harder for disabled people to survive but i don't think some activists understand that disability itself is disabling and disability isn't just an outcome of ones circumstances

[boycritter]

silly little comic about chronic pain

[image id: an 8 panel comic

the first panel has a conversation between two people. the one on the right is a light gray, and facing away from the viewer. they are meant to represent a generic person. they are saying, "wow, chronic pain sounds like it sucks." sucks is written in a dark pink. the person on the right has tan skin, a pink shirt, and pink hair. he responds "haha yeah."

the second panel shows the same two people, with the first person saying "how do you tolerate it? i'd go crazy!" tolerate is written in a dark pink. the second person responsed "um..." and trails off

the third panel shifts to a drawing of the second person sitting curled into himself. it is entirely grayscale, except for his pink hair, which is a little more muted. the text around him reads "i tolerate it because not doing so isn't an option". 'isn't an option' is written in dark pink.

the fourth panel shows him sitting and leaning against the left edge of the frame, with his legs stretched out. it reads "because what else am i supposed to do?" supposed is in all caps and written in dark pink.

the fifth panel shows a torso up drawing of him in the bottom right corner. the text reads "i can't hope for a day i'll wake up and be better." better is written in dark pink and all caps on the left half of the panel.

the sixth panel shows him sleeping, with a brown dog near his head. the text above him reads "all i can do is make sure i wake up." wake up is written in dark pink.

the seventh panel is all text, reading "i tolerate it because it needs to be tolerable". tolerable is written in dark pink.

the eighth panel shifts back to the conversation between the two people. the man finishes his response to the other person's question with "i don't know".

end image id]

[akindplace]

it’s okay if getting better is taking longer than you hoped to. if getting better doesn’t mean getting cured. if somedays are better than others. if others seem to heal faster. if it’s exhausting. if your illness is chronic and progressive. it doesn’t mean people won’t love you as you are, it doesn’t mean you don’t deserve help, it doesn’t mean that you can’t ever be happy. you still deserve care, love and kindness when you’re suffering, and i hope you find it within yourself to feel compassion towards your own body, even if some people might not, even if it doesn’t work in the way you wished it would, even if it’s different.

[nebulow]

It almost seems like non-disabled people have a harder time accepting when a chronically disabled person will never get better - and maybe even deteriorate over time, than the affected person has.

"Aww don't lose hope"

There is no hope to be had? Stop pushing your toxic positivity down my throat when I have come to terms with my situation and am grieving already.

Losing hope is what has given me an ounce of peace of mind. This is what life is now. It's not your grief, it's mine.