Fighting to be Disabled

Image Credit: Yomex Owo via Unsplash com

I am disabled and sharing that feels like a relief.

I've spent the better part of the last two years in and out of doctors' offices undergoing invasive and excruciating tests that have cost thousands of dollars.

While I'm finally at the point where I'm down to quarterly visits with my primary and my specialists, my doctors have a major aversion to the "d-word" and have treated disability like it's a curse.

I don't see it as such which is why I'm fighting to be seen as disabled. Doing so will help me better navigate and orient myself in the world.

This fight began for me in the summer of 2019. I remember having random bouts of debilitating pain throughout that year but things came to a head on my last day at Disneyland.

I was visiting the theme park as a part of a sabbatical offered by Sweet Rest and as I was walking from a restaurant to my next attraction I was hit with a wave of pain unlike anything I'd ever felt before. I remember speaking to a cast member who directed me to a shop where I could get help seeking medical attention. Tears silently ran down my face as the sweet blonde woman in the shop tried to call for help before sitting me down on a bench and running to find me a wheelchair. Because the pain was so severe that I could no longer walk without aid, she found coverage for the store and wheeled me out the park herself. I was terrified because I had no idea of what was happening in my body and I was thousands of miles away from anyone who might have a clue about what was going on. It was only after speaking to my doctor and my mother about what happened over the following months that we found words to identify what happened that day.

I had my first fibromyalgia flare.

Fibromyalgia is a tricky condition with a long and tiring process for diagnosis. My path to understanding what was happening in my body was significantly shortened because my mom has it too and our age-related presentations are near mirror images of one another. Her knowing what to do helped me expedite treatment and testing which allowed me to be diagnosed with fibromyalgia months to years ahead of when I might have been otherwise. I can't begin to express how much it meant and means to have someone believe and console me because they intimately know what it feels like to cry out involuntarily because it feels like you're being electrocuted or struck by lightning in different parts of your body. I hate that she has it too but also hold gratitude that I'm not alone in understanding what's happening to me.

To be honest, pain like what I've described is taxing and takes its toll on you. There are more days than I can count when my bed has been my refuge because my pain is so severe that walking the 20 feet to my office or the restroom might as well have been 20 miles.

Being attuned to my body, its changes, and the shift in my capacity is what motivated me to start speaking to my medical providers about what it could mean to unpack that my fibromyalgia is, in fact, a disability. I wasn't prepared for what happened next.

None of my doctors wanted to use the word disabled to refer to me nor disability to speak of my fibro. I was told repeatedly that I needed to avoid a mindset that framed my condition in this way and that I was being given tools to avoid seeing myself as disabled. While I know they likely meant well, I found myself rebuffing and challenging the ableism present in these examination rooms.

I had to articulate that acknowledging that I am a disabled person is not defeat but an admission and acceptance of a new reality for me.

It is critical that I fight to understand what being disabled means because that will help me understand what supports and resources I need to more sustainably move through the world.

Naming that I have a disability helps me connect to others who have an embodied understanding of my reality and our shared experiences can help us forge community as we share our stories.

Saying that I am a disabled person means that I can both get and be help in times of need.

My understanding of all this is why I say sharing that I'm disabled feels like a relief. The truth is that I've fought and am continuously fighting to be my most authentic self and not allowing anyone - including my doctors - to encroach on the dignity and integrity present in acceptance, inquiry, and admission matters.

I am disabled and I'm grateful that I have the tools, space, and capacity to help me declare and share this truth.