Chronic Illness

253 readers

2 users here now

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 4 months ago

MODERATORS

mecfs

[email protected]

How do folks here handle the feeling that they're just waiting, not serving a purpose, and being a burden on their family as well. (lemmy.dbzer0.com)

submitted 2 months ago* (last edited 2 months ago) by [email protected] to c/chronicillness

21 comments fedilink hide all child comments

I wake up, I eat, I read a little, I go back to sleep. I wake up, I eat, I read a little, watch a show with my wife, go back to sleep. I try not to eat more than 1500 calories because my activity level is so low I'll get fat if I go above that.

What's the end game here?

EDIT, FOR CLARITY:

I can't work. I need to sleep like 14 hours a day. I'm exhausted all the time. I get fatigued after about 5 to 10 minutes worth of any labor, including things like going upstairs or loading a dishwasher. My hands shake all the time, to where I can almost not clip my own fingernails anymore.

I work a job for years and retired from it there's plenty of money coming in. I just find myself in a place now where this chronic, undefined illness has taken over my life.

you are viewing a single comment's thread
view the rest of the comments

[–] De_Narm 12 points 2 months ago* (last edited 2 months ago) (1 children)

Now, I can't give you actual advice, if this is something that's constantly bothering you, you might want to speak to a therapist. What I can offer is my perspective - however, you might want to know beforehand that I'm not chronically ill. I had medical issues which weighed on me quite a bit, but those turned out to be resolvable after about 2 years.

I don't think live has any grand purpose and you'll never be content if you try to chase one either. There is no point in waiting for something that may never come. The best thing you can do is to find things you enjoy and maximize whatever you can get out of live. Try lots of different things within your means, visit places and meet new people. The worst thing you can do, from personal experience, is to repeat the same things every day. Your days blur together and there is no meaning to be found in them.

[–] [email protected] 2 points 2 months ago

That sounds like good advice