The Autistic Asshole Versus Medical Gaslighting

a photo that I (still very high) insisted my husband take of me directly after my endometriosis surgery last year (photo credit as always to David Pardo Bernal)

As I write this, I’m sitting in the waiting room of the doctor that made my life worth living again. A year ago, I was referred to an infection specialist because of a severe UTI that just wouldn’t go away. The organs on the right side of my body were inflamed, I could barely leave the house due to urinary frequency, and I was deeply, profoundly frightened. No matter how many different antibiotics were thrown at me and no matter in what quantities, my body just couldn’t shake this thing. 

This infection was not the beginning of a health crisis but rather the culmination of it. I would eventually learn that I have endometriosis but at the time I met this infection specialist I still did not know what was happening in and to my body. For two years, my health had been in steady decline. I experienced severe pain at around the same time every month, pain that I can only describe as life altering. I don’t mean that the pain significantly changed the way I was able to live my life in a practical, day-to-day sense (although it certainly did). What I mean is that it fundamentally changed who I was as a person.

At this point, I already knew that the world could be ignorant, neglectful, and even cruel when it came to how differently my brain worked due to autism. This profound bodily pain taught me that the world (namely the medical community) could also ignore what was happening to me physically and even punish me for it. No matter what, doctors told me I was doing the wrong thing: I shouldn’t be taking hormonal birth control, I should change my diet, I should just get pregnant because I was already in my thirties and had a husband. 

me during my intravenous antibiotic treatment, once again photo credit to David Pardo Bernal (I promise the photos he normally takes are a little more cool nature based, little bit less medical soap opera)

But then I met Dr. Gesundheit (name changed to protect his privacy, but I would love to meet a German doctor actually named this). Finally, I had an ally in what felt like this war against my own body and the medical community at large. It wasn’t just that he believed me, or that he asked me what I thought about the treatment plans he recommended, giving me back the agency that felt so deeply lost as I lost control of my body. It was that he saw me as a person, not just a body to be fixed. 

For years, gynecologists had refused to believe me when I described my symptoms and I believe part of that was how I present as an autistic person. My husband, the only person that actually saw this pain on a regular basis, told me it took him a while to really understand how severe my pain flare-ups are. Apparently I just didn’t outwardly present as much as you might expect from someone who feels like they’re being burned alive and stabbed in the pelvis at the same time. 

Time and time again, I described (in detail) how severe my pain was to doctors. I told them it was a 10 on the 1-10 pain scale (they never believed me), and I described what the pain did to my body. I told them that it immobilized me, made me vomit, and that I often had to focus not to pass out during a bad flare (I’m paranoid about dying like a rockstar- passed out and drowned in my own vomit). My mom, who also has endometriosis, told me that she used to pray to die during bad flare ups.

I told doctors all of this, but I didn’t exhibit neurotypical emotion while doing so. Many fellow endometriosis patients told me that it was necessary to put on a bit of an act- to sort of recreate the scene of a bad flare-up in front of the doctor so they’ll take you seriously. But for me this would require a LOT of masking. When I was in the depths of a health crisis, this was just not something I had the energy to do.

The term masking refers to the methods autistic people (and other people with neurodivergent brains) use to fit into neurotypical society. This usually means ignoring ways of being in the world that feel more natural to us. As evidenced by my experience with medical professionals, masking is often a necessity to get the support, services, and treatment we desperately need and deserve. However, masking long-term often leads to poor mental health.

Autistic people (and again, other neurodivergent people) often struggle with executive functioning, which basically just means all the important brain shit that it takes to get through the day– think having a consistent morning routine, being able to switch tasks easily, and being able to start and complete projects. But, really, how do you think you’d be functioning if part of being in the world in a day-to-day way meant ignoring basic needs and pretending that your brain functions fundamentally differently than it actually does? This is why people that can accept and understand us as we are, without us having to put on a show of pretending, are so incredibly important to the mental and physical wellbeing of autistic people.

This morning, I just walked into his office without making an appointment- something he told me to feel free to always do if I needed something right away. I expected to just leave a urine sample, but he took me into his office and asked me to go through my current symptoms and then just asked me how I was doing. As I talked about my symptoms, I saw the look of genuine concern on his face that I’ve come to know so well. This look is not only comforting to me as his patient, it is deeply life affirming as someone who is often, for a variety of reasons, ignored and pushed aside by the world.