Am I Faking It?

I have chronic migraines. I got diagnosed when I was probably around 13 or 14, but I’ve never felt like I could call myself disabled or claim identity with the chronic illness/pain communities. It’s not that I feel put off by those labels– I’ve done plenty of introspection on that, to make sure that the reason I didn’t feel comfortable with those labels wasn’t because of some subconscious bias. Rather, I feel like my migraines just aren’t bad enough, don’t affect my life severely enough to “count.” I feel like claiming those labels would be exaggerating, or speaking over someone who “fits” better than I do. 

Which is stupid, by the way. I essentially live my daily life with a near-constant headache clocking in between 1-4 on the pain scale, with occasional spikes to higher levels. When it escalates to a migraine, I get nauseous and can’t eat or drink for a day or more, until it goes away. Before a migraine hits, I often get visual aura, which looks like TV static taking up most of my vision. During a migraine, I become extremely sensitive to sounds and smells, and I get so photosensitive that, especially combined with the visual disturbances, I can become effectively blind for several hours. Depending on weather patterns, stress, and other situational factors, I average between 3-10 true migraine episodes per month, with other severe headaches in between for spice. This has impacted my academics, my work life, my social life, my mental and physical health and development, etc. Everything. Like, what part of that experience doesn’t sound disabling??? And yet, I struggle to feel justified in identifying as such.

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. 

Tell me how you really feel UMBC

It’t no secret that UMBC is the worst in terms of accessibility. What follows are my experiences as a disabled student at UMBC throughout the course of my developing disability.

Try to understand me

As someone with chronic pain, I feel like I’m always trying to get people to understand me and my life. And most of the time, even after I try explaining it all, they still don’t understand.

Endless Pain

There’s a quote by John Green from one of his books that says, “That’s the thing about pain. It demands to be felt.” I have yet to find another quote that so accurately describes my life. No matter what I’m doing, my pain demands to be acknowledged and throughly felt.

Cannabis and Disability

June of 2015 is when my pain started. My doctor told me I had bursitis in my foot, so they did their normal treatment. Fast-forward to September of 2015 and my pain is only getting worse. I lay in bed at night clutching the sheets in my fists and wincing until I fall asleep.

The limits of pain; the creation of a unique desire

My back hurts. Every day, all the time. For the last five or so years, I have shifted in my seat every few seconds, taken the elevator to the second floor. I have declined invitations to go hiking or biking, trips I normally would have jumped at the opportunity to participate in. Sitting and standing and lying down are mostly unbearable, which really sucks, because those are pretty much the basic three positions my body can be in.

Ouch.