Choice

The hardest thing to talk about, to articulate, is how chronic illness feels like a violation of my autonomy. A divine violation of my body.

There is a certain pride, and inherent entitlement in a working body that we do not realise till we do not have that perfectly, or near perfect working body. There is a saying in the chronic illness community, “you do not understand it till you have it yourself, and I hope to god you never have to face it.” I am paraphrasing, of-course.

During my second year, first semester, I was living in denial. Clutching at a stray strand of hope, praying this would go away, that it wasn’t anything too serious. I didn’t have a diagnosis then. My then doctor suggested it was PCOS. And I ran with it. Forced myself to stay off the net. Forced myself to not spiral. Clutched onto school like a life line. Told myself that my illness could never be an excuse to underperform. Told myself that I must over perform, extend myself too thin because how dare I take rest. Told myself that it wasn’t that bad. I was going hungry for days and weeks, in a lot of pain, terrified, losing my will to live, but it wasn’t that bad, it could not be. It was a phase, a silly phase that wasn’t bad at all. It was all in my head, the pain, the anger, the fear, the grief, it was all in my head. I would never ever let it get in my way. How dare I let it get in my way. This would not change anything. This will never change any of my plans.

And then it happened.

I have multiple forms of flare ups, this one I called the exhaustion flare up. Everything hurts, even breathing hurts. It was hot and cold and cold and hot and hot. Everything tasted terrible. Everything was just… everything was painful. I hated this kind of flare up because I cried trying to do everything. This was the single time when I was non functional by every definition of that term. Chest pain didn’t terrify me as much as this did.

It was rare, for the most part. And it took about a week or two to recover from.

The first time this happened was during mid semester break in year two, semester one. I had a workshop that I was excited for, but this hit me.

Till then I just hid the fact that I was sick. I hid the fact from everyone. I told myself that they needn’t know, that I didn’t need to be that vulnerable, that I didn’t need to be anything less than what I was. Not quite less than, but less than in some sense of that word in terms of perception.

I was terrified but I had to tell my module leader. This was the first time a choice was taken away from me. At least, it felt like that.

I have scoliosis, and I have lived with a certain amount of pain on the daily since I was 9. I have constant headaches because of the angle of my scoliosis. I never needed to tell people this, needed them to understand that I was struggling, needed them to give me a little more grace. Achalasia forced me to ask, to be vulnerable, expected me to be more vulnerable than the average person asking, begging for a modicum of grace. And always necessitating me to remember that that doesn’t come easy. It doesn’t come with one single conversation. You would have to rip yourself open, show them how hard, how painful it is, and then force yourself to take scraps believing that they were mountains.

On hindsight, it is the the mildest form of violation in my opinion.

Even after this I kept at the internal monologue.

“This cannot get in my way. My illness can never be the reason I underperform. My illness cannot be the reason why I lose out on opportunities. My illness cannot be the reason why people look at me as less than. Before they even think to look at me as less than, let me show them how very capable I am.”

It went on and on and on for months, before I crashed. Before I was told that this was a chronic illness, that this was a disorder, that I would have to deal with some version of it for the rest of my life. That this is rare. That there were not many who knew of it, who experienced it. That people won’t believe me because I looked normal. People needed me to repeat my diagnosis, its symptoms repeatedly by that they remembered. People needed me to state my boundaries repeatedly because what triggered me was normal to them.

Life is a give and take of everything, but once you have an illness, the people around take more than they ever give. It is the inherent nature of it. It is an inherent part of the structure in which chronic illness fits into our life and into all our relationships. Another form of violation that we never anticipate. A choice taken away. A perfect relationship ruined by internalised ableism in oneself and the others. By the inability to meet in the middle. An inability to understand, fathom, confront physical pain in another and oneself. The inability to understand that this cannot be fixed, it can only be managed. That no one can fix it, and trying is a slap to the face.

A violation that I wasn’t anticipating was the way in which an illness would seep into my life. It took over me, it took over every single aspect of my life. The way I worked, how much I worked, the way in which I moved, how much I moved, what I ate, how I ate it, what I carried in my bag everywhere, how much I could sustain carrying, was flareup because of lack of preventative measures better than flare up because of preventative items that I was carrying in my bag… everything was a bargain, every single thing was a calculation, every single thing was a weighing of pros and cons, every single movement.

I still kept telling myself, this could never get in my way, this would never be the reason I underperform, never will use this as an excuse, never will- never will-…

And I crashed. The acceptance that it was a part of my life, something that lived in me, with me, as an intrinsic part of me, something that needs tending to, care, love, kindness, compassion, advocation, strength, sometimes even long breaks from the world… it was perhaps the most silently violent violation of the person I have always wanted to be. The most forcefully violent understanding that my choices were forever going to need to factor this thing into them.