How Being Trans Has Made It Harder to Receive Treatment for My Chronic Illness
Let me begin by saying, I’m incredibly proud of being trans. I am proud of myself, people in my community, and the generations of trans elders who came before me to make my life possible. But I’m also terrified of being sick now that doctors know I’m trans too.
For some background information, I can be described (medically, at least) by a short list of divisive topics that many doctors don’t believe in. I’m trans and non-binary, I have C-PTSD (just humor me for a moment and pretend that’s in the DSM), I have a restrictive eating disorder (technically I believe that’s called OSFED now) and I have an undiagnosed chronic illness which I have been told is either fibromyalgia or another mystery autoimmune problem.
So, as I’m sure you might imagine, even before they knew I was trans, doctors have never treated me well.
However, in the past year (I’m cheating a little and starting at the end of 2017) since I’ve been taking testosterone and more recently got top surgery (or since, as doctors call it, my Transition), the level of gaslighting and flat-out refusal of services I experienced began to skyrocket.
So to illustrate, here’s a brief glimpse of my 2018:
Within two months of starting hormones, I am all but forced out of an intensive outpatient program for my eating disorder because I am trans.
Several months later, my primary care provider (who mostly works with trans people at a LGBTQ-specific health center) blames my hormones for my chronic pain, even though she herself tells me it’s fibromyalgia. She gives me a note for an ergonomic keyboard at work, but doesn’t refer me to a specialist to get a diagnosis. She tells me to just look for one myself.
And I try to. I spend months scouring the internet for referrals on my own, I call a neurology center, I get more referrals, I ask around with other people with fibromyalgia (who are not trans), and I’m given a lot of bad advice. I see maybe half a dozen therapists who are either transphobic or not adequately trained in trauma, or both. I go to physical therapy and am finally told my pain is mechanical. It is one of the few times in my life a healthcare professional tells me my symptoms not just “in my head.” I finally find and stick with a therapist. I get top surgery.
Around my year anniversary on hormones, I finally get my PCP to give me a formal referral to a rheumatologist. She tells me it will be a while and not to hold my breath. She refers me to a pain management and spinal injury/neurology center in the meantime.
A month later, I finally get my appointment with the pain management center, and the doctor attempts to deny me even a quick routine exam.
He tells me first off, that doctors don’t listen to patients with fibromyalgia so I shouldn’t pursue that. But he tells me I don’t have fibromyalgia anyway. He tells me if I do have chronic pain, it’s because I went through “Gender Transition” and he claims that my body wanted to transition so badly that it was stressed and made up the pain. He tries to tell me that being trans literally in and of itself causes pain on the human body, without a shred of hesitation or self-awareness for how medically incorrect and totally laughable that sounds.
He tells me to just go to therapy because I’m trans.
In order to even get him to do a quick exam (otherwise known as doing his job), I need to argue and lay out pre-prepared evidence from my physical therapist that my pain is mechanical. I need to give him a prepared timeline placing my pain before I started hormones.
Only after that does he begrudgingly check my vitals, balance, reflexes and look for spinal injury by pressing into corresponding muscles. Less than five minutes later, he tells me I likely have “fibromyalgia or a fibromyalgia-like autoimmune disorder” and confirms that bundles of my nerve endings are causing symptoms in my muscle tissue.
He does not acknowledge that he just contradicted himself, or that he just tried to get away with denying me the exam in the first place. He walks out of the room without answering follow-up questions and closes the door behind him.
Now, just to put this in context for any readers who are unfamiliar with this issue, my experiences as a trans person in healthcare are better than most. I am white, I have amazing health insurance through my full-time job, and I also work in a healthcare-related field, so I am unusually well equipped to engage with doctors and fight for what I need.
So if you have learned anything new from this post, please take this as an opportunity to become an accomplice. Support trans people, trust us, listen to us when we share our experiences, and know that being trans is not the issue, but the oppression we face is. And for those of you who perhaps can relate: you deserve the world. You are not a burden, and you are not overblowing the situation. Please put whatever support you have available to work – even if it’s just a random person who posted a little something like this online. We are stronger together, and I’m rooting for you every step of the way.