Content advisory: this post discusses experiences and examples of medical spaces being uncomfortable/unsafe for people who identify as transgender, genderqueer, nonbinary, or another related identity.
I made this a blog post after publishing it on my personal facebook page and several people commented that they had no idea these experiences existed. I realized it should reach a wider audience. I’ve posted it below without editing except to emphasize certain words and I’ve also added some links for further education.
I’m pretty sure you are aware of the pinkified, radically femme and feminized culture of breast health issues, breast cancer, and the typically-broadcast stereotype that only cisgender women experience them.
I’m pretty sure you all are also aware that all genders and body types can have breast medical issues despite the above-mentioned stereotype.
But I think many people aren’t aware of what it can feel like to be in a medical space intentionally geared towards women’s breast care if you are a nonbinary, genderqueer, or transgender (and other identities) person. Or a cisgender man.
I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.
I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.
My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.
Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.
My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.
My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:
He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.
He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.