Chronic Illnes Life Struggles

1. I won’t get better so please stop saying, “get well soon”.

2. I don’t want or need to be treated like a baby when I’m in a flare up, but I do want your support.

3. Just because I have one good day does NOT mean I am cured.

4. It’s not all in my head!!

5. Sometimes getting out of bed feels impossible, and other days it is impossible.

6. I am in pain EVERY SINGLE DAY! Some days are better than others, but I am never pain free.

7. Sometimes I will show up and be physically there, but not mentally.

8. Telling me to take Tylenol or Advil does not help. I know you mean well, but please stop.

9. Just because your shoulder has hurt for a couple days does not mean you understand what I experience. Don’t try to relate useless things to my chronic conditions.

At the beginning there is so much support (or at least more support) but when they realise you're not recovering as quickly as they'd like... you get avoided, isolated, told you're exaggerating, etc. They seldom think about how those of us with chronic issues feel. How overwhelming it is to deal with everything day in and day out. There is so much anxiety, depression, grief, etc when dealing with chronic issues regardless of what they are.

Man, am I sick of the narrative in disability communities that everyone has to love the hell out of their disability, declare that they wouldn’t want to live any other way, that their disability is a part of themselves, and absolutely the only problems it causes them are really caused by ableism.

All of these are totally true and important for some people.  But it seems like a lot of communities want to make it into the trendy new way to be a Good Disabled Person.

When, no, actually, some disabilities just intrinsically suck.  Depression?  While mental-illness discrimination is a major issue for depressed people, let’s not downplay the pain that comes from being depressed.  Dyspraxia?  I accept it as part of myself because I’m sure it’s not curable and I’ve had my whole life to learn to live with it, but if it were a choice?  I’d take “not constantly hurting myself” over “constantly hurting myself” in a goddamn heartbeat.  And the third thing I’ve got that could qualify as a disability is asthma.  Yeah… not going to learn to love that, either.

Casual ableism glares at you when you’re unable to perform household chores because you barely have the energy to get out of bed

Casual ableism gets uncomfortable and backs out of the conversation when you try to explain why you don’t have enough energy to do anything

We’ve tried a feeding tube Nose-Jejunal and that backfired like crazy… I lost even more weight after this, since the whole situation got even worse after that, to the point where I could barely hold down fluids even…

Try saying “I’m scared I’m going to be alone” instead of “you’re going to leave me like everyone else”.

Try saying “I’m sorry I hurt your feelings. I feel bad about it. Is there anything I can do to help make this better?” instead of “I’m such a failure and a bad person. You shouldn’t be friends with me anymore.”

Try saying “I’m feeling really alone lately. Can we talk more?” instead of “you never talk to me. You must not care about me.”

Our loved ones can’t read our minds. No matter how obvious it might seem to us that we’re struggling, it isn’t necessarily obvious to them. And there are any number of reasons that they might not notice, or might notice and not react (such as trying to respect that they think you don’t want to talk about it and will come to them when you’re ready.)

Doctor Jo on YouTube is a physical therapist who offers lots of therapeutic stretching and exercise videos for specific conditions and pain relief. [x]

Leap Services is a Canadian physical therapy group that has a YouTube playlist of gentle exercise routines. All of these exercises are done in a chair (except for one which is done on the floor) and are intentionally adaptable to different bodies and needs. [x]

Yoga with Zelinda on YouTube has yoga that's adapted to a large number of conditions, for instance, providing a playlist of routines that don't require kneeling and another of chair yoga. She also offers yoga for specific health challenges, like fibromyalgia and mobility issues. There's a playlist of yoga routines for people with bigger bodies as well. [x]

Santosha Spirit on YouTube has yoga routines for people with chronic fatigue, chronic pain, POTS, and EDS. [x]

Yoga with Shaunneka on YouTube has a playlist of slow seated yoga, including chair yoga, as well as a playlist of gentle yoga. [x]

Qinergy on YouTube has tai chi sets broken down into easy tutorials. There is a seated version of her shibashi set. [x]