When Pain Isn’t Normal — And Doctors Don’t Listen.
I was young when I got my period for the first time — eleven years old, before we separated into boys and girls groups at school (what happened to the nonbinary kid in our class? I don’t honestly remember) and heard about the “changes” that would happen in our bodies through adolescence. I spent the night before the blood appeared doubled up in pain, wrapped in a giant blanket, reading a book. When my mother finally realized what was causing my pain, she said, albeit with good intentions, “Oh, that’s normal. Everyone hurts when they get their period. You still have to go about your day, though — there’s no excuse.”
Because I was Deaf, I never really saw a doctor on my own. I didn’t get the benefit of interpreters at my appointments until I grew up, got married, and moved away. I always thought the pain that I experienced every day, and particularly around my period, was normal — because I was told that was the case. Without a clear, direct path to communicating with my doctor, I wasn’t allowed the agency to express my experience or even voice what was going on in my body to begin to get help.
Finally, I was with a partner who fully supported me and cared about my well-being, and we started the process of figuring out what was going on with my body. First, he supported me in getting my access needs met at the doctors’ offices. We had a partnership where I would set up an appointment, ask for interpreters, and be told that they couldn’t provide that; then, my partner and I would work together to write persuasive e-mails to the offices about my access needs and rights under the Americans with Disabilities Act. This support helped build my confidence in demanding for my needs to be met, which was the catalyst to my finally having autonomy in my medical needs.
My first appointment with a gynecologist was at a Planned Parenthood right before we got married. Guess what Planned Parenthood does, among other services. It provides STD/STI testing for young couples who are about to get married! In my case, I had never been sexually active before. It was an enlightening experience because the first thing I learned about my body was that the pain was systemic — it was always there. I didn’t have my period at this appointment, and still, the doctor couldn’t even use a child-size speculum on me without the kind of pain that made me see white. We had been there for birth control — specifically for an IUD because my research told me that the non-hormonal type was the best option for me and my illnesses. Unfortunately, that appointment was unproductive due to the pain, and we left without any real resolution. As good as Planned Parenthood is, they didn’t have the resources to even begin to help me at that point, and I didn’t have the bandwidth to begin investigating. This whole experience gave me pause, maybe this was less about my period specifically, but more about a holistic view of medicine and treatment that took my whole body into account.
We moved away from my hometown later that year, and I started seeing a new specialist and gynecologist in my new city. I still dealt with all the same pain, but it wasn’t impacting my lifestyle yet — and though he tried, my partner couldn’t really convince me that it was unusual. I thought my pain was something that I could wish away or that, by being active, I could work through it. When we moved again four years later, I put off finding new doctors because of the years of feeling like I didn’t really know or understand what was going on with my body. That, along with the fear that the medical ableism and infantilizing would continue, where doctors would push me to do testing and treat me like a medical guinea pig while still not getting any real information about my own illnesses and disabilities, made the pursuit of a new medical team daunting.
Medical ableism, and ableism in general, is baked into the core of society. It shows up in how we have learned to treat disabled people and the language that’s used to discuss us. We’re taught that disabled people are essentially helpless — this is also known as infantilizing. And because of the language barrier between English speakers and ASL speakers, the general population assumes that Deaf ASL speakers are somehow intellectually inferior to them. This absolutely translates into medicine, where doctors believe that they know better than disabled people about how their bodies work or feel, and they neglect to get consent or explain procedures. This is scary! It makes going to get medical care frightening and triggering because a lack of consent in treatment leads to medical trauma.
Later, that spring, I spent a weekend in a fitness instructor training — and came away with a rib injury. I was in so much pain, I couldn’t even breathe deeply, and my partner dragged me to urgent care. After x-rays, the conclusion was that I had strained the intercostal muscles of my ribcage. I was sent home with a prescription for Tramadol, which I very carefully rationed, knowing how difficult it usually is for me to get any kind of medication at all. It would take another five years before I would realize (or admit) that not only this injury, but also my monthly pain, wasn’t improving and was, in fact, having a huge impact on my life. Only then would I start the search for a physical therapist to get help.
This physical therapist was the only person willing to work with me as a Deaf client. I’d had a few other initial consultations, but they ended in the therapist backing away, claiming they couldn’t possibly work with me (and especially, supposedly, couldn’t provide interpreters). It meant the world to me that this therapist finally sat down and talked through my treatment and symptoms with me — and then worked to get me in with a colleague of hers who was a very specialized type of gynecologist. And I mean she worked! It took at least ten e-mails back and forth, and she even had to call the doctor directly, to get the office to work around my disability and be willing to provide accommodations.
I have had my first appointment with that doctor — my partner coming with me again — and an interpreter. It was very obvious that this doctor understood what the interpreter was for and how to use one efficiently. She came into the exam room and pulled up a chair so that we were in a circle — me, my partner, the interpreter, and the doctor. First, we talked a little bit about my history with medicine and with being dismissed by previous doctors. It made an impact on me that she was an active listener — watching me sign and watching the interpreter closely as well. (It didn’t take too long for her to reveal that she actually knew some sign, which was an even bigger deal for me as a Deaf person. It’s helpful when people attempt my language, but at the same time, see the need for interpreters and don’t try to use their knowledge as a way to get out of providing that access to me.) For the first time in my experience with doctors, this new doctor talked about being on a team with me and my partner and my specialist. When she did the examination, she explained step by step what was happening and she asked for consent — and she also stopped when things were too painful.
This was a huge contrast to the treatment I had received at many other doctors, gynecologists, and all other specialties included. I had never been given full explanations all the way through an appointment. I had never been treated like an equal partner in my own medical care. But this was different. She gave me some things to try. This doctor wasn’t all medicine-driven; she didn’t just tell me to go on birth control. She listened to the fact that I had had bad experiences on birth control, and she offered some more holistic treatments (compounded medications). She ordered tests. She emailed my physical therapist her recommendations, and I am continuing weekly treatment in that vein as well.
So now it’s a waiting game again, but at least I feel heard — and I feel hope that there are some good doctors in the world. I’m armed with more strength and ability to continue looking for practitioners who will partner with me in my medical care, rather than take a paternalistic view of medicine.
