Trapped

Chronic illness can sometimes make you feel trapped.
Being ill is surprisingly accompanied by constant guilt. All the time. Especially if you have invisible disease.
I have talked about this before, but I am feeling it especially lately.

There are comments about not looking sick enough. People wondering if I am too ill to do certain things then why can I do other things at other times. Others wondering why I need a cane sometimes, a wheelchair sometimes, or that I can also wear heels sometimes.
Constant scrutiny. Over nothing.

Not only that, but if you are in my position where I cannot work, it is much worse.
I look normal, my social media feeds make me look sort of normal, so why can I not work, right? Then, as a patient unable to work but young and trying to maintain some sense of sanity, there are mixed messages. On one side we are encouraged to find activities and even small gigs or ways to get out there, but then we are immediately also punished for it.

I can try and participate in art therapy, I can try to sing or even participate in a photoshoot, and some people are praising saying "Good for you for trying to do something different!". Others make you feel like you are doing something wrong. They make us feel as though they believe that if you can sit for a photo shoot for 2-3 hours two or three times a year, then you are 'obviously not that ill'. It doesn't matter that it takes me weeks to recuperate from an afternoon like that.

Any time I go and sing or try and model, I am attempting to give my own life a little meaning beyond being a patient. These activities are often what keeps me in a positive head space. People forget how much I am sacrificing to try and have some semblance of normalcy a few times a year.
Art has also become a coping mechanism for me... but because I even toyed with the idea of selling my art online (even though I am not pursuing that venture), I am made to feel like I am doing something wrong. That doodling flowers and leaves and feathers is so awful that I should feel guilty.

This is the ugly part of being chronically ill. This is the ugly part about having a disability. There is this belief that if you cannot work then you should not be doing anything - ever. That enjoying life or trying to find something to be passionate about is wrong. This general viewpoint is felt - trust me.

If I go out for dinner - I worry about how many people will think I am all-of-a-sudden better. They don't see me puking in the washroom, or spending hours on the toilet afterwards because I decided to go out for dinner.

Practicing yoga is something that is recommended and encouraged by my doctors and specialists, but every single day I worry that my 5-minute yoga sessions twice a week are going to get me in trouble. I feel it from people - that yoga, that stretching, is something I should be ashamed of.

If I am singing at any location - I worry about people believing that I am hiding something. They do not see the 4 extra pills I take, the wincing, the pain, the crying in the car on the way home just from pain. They do not see the following weeks of having barely any energy to get dressed. They do not see me as a zombie because of 1 hour of singing.
God forbid if I make any money doing these things! That, in particular, is a major issue. That is why most of my singing has been volunteer work. It is one of the reasons why most of what I do is fundraising. It is why any art, most of my singing, is donated, or volunteer. I am seen as this 'evil person' if I receive anything monetary for anything I am passionate about. Just the act of doing anything at all is wrong enough to warrant continuous judgement.

Sometimes, the disgusting part of being chronically ill is not actually the disease itself. It is the viewpoint that you are worthless to society because of it.

I am so sick of feeling guilty when I am doing absolutely nothing wrong. I am tired of feeling like I have to hide every tiny little joyful part of my life because of what kind of trouble I may get into.
Did you know that I was actually terrified of having a wedding? I was petrified that I would get a phone call saying that if I could manage to handle a wedding day, that I could 'obviously work'. Because they don't look at the fact that I ended up in the ER or that I required several additional injections. They don't look at all of the planning that went into it making sure I had time to rest, nap, and do nothing. They don't care that it took me 2 months after that day to even sort-of recuperate. 'Nope. If she can get married, she can work 8 hours every single day'.
This is how it feels.

The worst part of all of it: I am actually one of the extremely lucky ones! I have coverage! I became too ill to work while I was working at a job that included benefits. So I am particularly lucky.

I am also trapped.
Receiving benefits is also often accompanied by this dark shadow of guilt. I mean, that is their job. Their job is to make you feel guilty, like you are doing something wrong if you can even get out of your bed. Because you rely on them... and they know that you rely on services and coverage to survive at all. Having a disability is not the issue. I mean, it's no picnic, but that is not the worst part. The absolute worst part of illness is being made to feel like if you live AT ALL, then you should feel guilty.
I get particularly frustrated because I am a rule follower. To a TEE. I do what I am supposed to do. I follow the rules. I know that I am not doing anything that I should feel guilty about, and yet, I still feel guilty all the time.

Being ill all of the time means also feeling guilty all of the time for no actual reason.
THIS is a problem. Constant guilt should not be the worst part of dealing with severe chronic illness. It should not be the worst part of having disability. The pain and disability itself should be the worst part.
It's not.
It is the judgement that makes you feel guilty for even existing.