Chronic Illness

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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

Be excellent to each other
Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
No denialism or minimisation This applies challenges faced by chronically ill people.
No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

founded 8 months ago

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Thursday Triumphs (swg-empire.de)

submitted 3 weeks ago by [email protected] to c/[email protected]

3 comments fedilink hide all child comments

What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!

I'll try to post this regularly.

My disability got boosted to the next level which means more money and it will be easier to organise transportation should I need to go anywhere. And I think applications for future stuff will get easier.

Take that, lady who wrote I could wash my hair because I could lift my hand above my head once!

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[–] [email protected] 4 points 3 weeks ago* (last edited 3 weeks ago) (1 children)

I had what I thought to be a really bad flare up but it turned out to be gastritis from NSAIDs. I keep worrying I might have gotten IBD due to meds but gastritis is supposed to take 2 days to clear up, which it did, so that’s a win.

I still feel weird about applying for disability so I’m putting it off until I go through hospital diagnostics to be certain I have what I have (nrAxSpa diagnosis but my gut tells PSA or RA with axial involvement based on family history). I still have days where I have almost full ability with some minor pain which makes me think I shouldn’t. I could qualify for shorter working hours which would be nice since I’m pretty sure I’m triggering worst flares by prolonged sitting and standing which makes an office job tricky. Thank $deity for my extremely considerate employer. How did you feel about this initially?

[–] [email protected] 4 points 3 weeks ago (1 children)

You should start the disability stuff as early as possible because the time when you started will be the time when you'll start getting money. At least in Germany that's the case. And all this stuff will take a long time and many difficult confusing applications. If you can you should get some help.

It has been a difficult and strange journey. For me and my wife. We're still both coming to terms with the fact that this is now our life. I'm starting to call myself disabled. Although technically what I'm getting is not "disability" but "care". So I can still get a disability ID which I think will not give me more money, but makes me eligible for discounts and parking and stuff.

I still find myself forgetting the whole extent of my condition. Was watching a stream of a woman in a wheelchair. And she was saying that basically clueless doctors landed her in the chair. And I literally thought to myself: "Kind of like with me, luckily I didn't end up needing a wheelchair." While lying in bed, unable to use a wheelchair like her and unable to play a video game like her and unable to hold long conversations like her.

I wanted to write more but lack the energy.

[–] [email protected] 3 points 3 weeks ago* (last edited 3 weeks ago)

You should start the disability stuff as early as possible because the time when you started will be the time when you'll start getting money. At least in Germany that's the case. And all this stuff will take a long time and many difficult confusing applications. If you can you should get some help.

I live in Poland so I don’t think I’m entitled to too much so monetary concerns are not that big part of my consideration. I earn well but not well enough to pay for more expensive biologics out of pocket, hence trying to qualify for those through the hospital.

As far as I know the process for applying for disability is not very long but I’ve heard many stories similar to yours. I worry that when I get to be evaluated for disability I’ll be in 3 days of random remission and they’ll get offended that I’m even there.

It has been a difficult and strange journey. For me and my wife. We're still both coming to terms with the fact that this is now our life. I'm starting to call myself disabled. Although technically what I'm getting is not "disability" but "care". So I can still get a disability ID which I think will not give me more money, but makes me eligible for discounts and parking and stuff.

Silver lining is that we had partners at the time. I’m still pissed at the world in general because I was supposed to be the one taking care of her.

I still find myself forgetting the whole extent of my condition. Was watching a stream of a woman in a wheelchair. And she was saying that basically clueless doctors landed her in the chair. And I literally thought to myself: "Kind of like with me, luckily I didn't end up needing a wheelchair." While lying in bed, unable to use a wheelchair like her and unable to play a video game like her and unable to hold long conversations like her.

I wanted to write more but lack the energy.

It’s scary how fast it takes to get used to things. Take care! I’m the opposite so until the fatigue kicks in from the pain I take my mind off it by being hyperactive on Lemmy.