chronic fatigue

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For all my chronically ill baddies- you are disabled enough.

I have been chronically ill since I was 16. It started with POTS. Then came the classic Fibromyalgia. Chronic Lyme Disease. You name it. But I didn’t label myself as disabled back then. “Chronically ill” was the phrasing I used. Back then I didn’t know much about the disability community. I was just a sick teenager and young adult.

Then in 2020 I was diagnosed with an degenerative autoimmune disease- Ankylosing Spondilitis. I had to be put on immunosuppressant medication; the only thing that would stop the progression of my disease. It was scary to be immunocomprimised during the pandemic. I had to be really careful, and I basically couldn’t do anything or leave my house.

This is when I started learning about the disability community. I began to identify as disabled. I started educating myself about disability rights, and quickly became an advocate online. And of course some people decided this was too much for them. My (ex lol) best friend broke up with me (via text) spouting some nonsense about talking about my disability too much. She also claimed I was faking my autism (I had recently begun to self diagnose, and would later go on to recieve an official diagnosis) for attention. My own parents constantly questioned me about my referral of myself as disabled. It caused me so much pain and imposter syndrome.

Thankfully, I was able to work through this and come out on the other side, proud to call myself disabled. I am greatful for my friends and family that support me, help me, and care for me. They don’t dismiss me. I know I am disabled enough.

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Bedroom.

A view from my bed [ID: Hazy photograph of a window illuminated by vibrant red and purple lighting. In the center there is an electric candelabra sitting on the window sill, slightly obscured by sheer curtains.]

2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

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