I went to see a new doctor for the first time since I realized I am autistic.
I felt different this time. Less helpless, maybe. Less like a foreigner trying to have a sophisticated, urgent, intimate conversation in a language I knew only from studying textbooks and television programs. I still don’t speak that language — my strength is in written, not oral, communications. I have, however, found another, a kind of pidgin of the two.
The characteristics of of pidgin development, per Wikipedia, are as follows:
- regular contact between the distinct language communities
- need for communication
- an absence of an overlapping language
Going to seek medical help certainly qualifies for the development of an oral-written pidgin. For me, pretty much any interaction with the outside world does. Usually, I force myself to struggle through talking, even though words hide from me like children playing games. Even though listening without closed captioning and a pause button give me a maybe 30% comprehension rate.
This time, however, bolstered by self-understanding — Hey! Why I am forcing myself to have oral communication when there is a simpler, more accurate method for me to convey my symptoms and needs? — I walked into New Doctor’s office fortified by my most effective tool: words on paper.
At the top of the page, I had written:
- can struggle with oral communication
- best at written communication
- interoception sensitivity – I have difficulty recognizing pain until it is unmanageable (until then, I describe it as “discomfort”)
- can be very literal and have flat affect – please know that when I say that I have pain, what I mean is extreme pain
And beneath that, I followed with detailed medical history, finishing with the specific symptoms that led me to seek medical help. I neatly stacked the information, the way that I best process and communicate it, like nesting tables that can be pulled out when needed and put aside when not.
At first, I felt uncertain. I only have a “soft” diagnosis of autism, though not for lack of trying, continued trying. But I had to do something, I had to advocate for myself, especially if I couldn’t find professionals who would, despite the fact that I have reached out to my local autistic community multiple times, as if still waiting to hear back after a first date that ended months ago.
I also felt guarded. I have a disturbing history with the medical community, relating to my reproductive and mental health. From the early 1990s until 2013, I went from ob/gyn to ob/gyn, seeking relief from the intense, debilitating pain that I experienced during my menses. Every single doctor looked at my medical record — which included a (mis)diagnosis of bipolar disorder — and listened to my stammered and stuttered sentences. Talking is always hard, especially when it is about something important.
They all saw one thing, flashing in neon lights: BIPOLAR DISORDER. I was told that I was attention-seeking, dramatic, just needing exercise. I was told that people with bipolar disorder lie. I was told that I was manic or that I was depressed. I was told the pain was normal. Or in my head. Or no worse than anyone else’s. This last one always confuses me. What does it matter how it affects anyone else? If it is hard for me and I am seeking help … help me!
My ability to orally communicate with these doctors grew smaller and smaller, until it was small enough to fit in a capsule, like a reverse Magic Grow toy.
Finally, my supervisor at work recommended her ob/gyn, who was also a surgeon. I brought Adrian, hoping that if the doctor didn’t believe me, he would at least believe my husband. This went against everything I believe about people having agency over their own bodies, but I was desperate. Nobody was hearing me. Nobody was listening. Maybe they would listen to a “him”, especially a “white him”. I didn’t care anymore. By this point, I couldn’t walk when I had my period, the pain was so excruciating. I described it as “stabbing with a fiery blade”.
Ob/Gyn Surgeon was amazing. He was polite to Adrian, but never asked him a question about anything, let alone to verify my story. He listened to me. Because of Ob/Gyn Surgeon, I was able to finally have the hysterectomy I sought. Because of Ob/Gyn Surgeon, I learned that my body was going into labor every time I had my period, due to large fibroids in my uterus, that my pain was very real. Because of Ob/Gyn Surgeon, I felt empowered to see New Doctor last week with that piece of paper in hand.
I was nervous seeing New Doctor. I suspected I had pudendal neuralgia and read myriad accounts that stated people have spent years traveling around the country, trying to find a doctor who believed them. I cried to Adrian, “I don’t want to have to go through what I already went through with my hysterectomy. It is exhausting, trying to communicate, trying to be believed by one damn person. This is just like what happens when women seek autism diagnoses.”
I thought about all the ways my life has changed since I realized I am autistic. I found myself. I honor my needs. I no longer feel shame. I find different avenues or create my own. I use flash cards and read blogs and do research and join support groups. Every aspect of the way I live my life has been transformed. It can be hard. It can be painful. But it is real.
I can do this with New Doctor, I thought. I can establish a baseline with her, stating ‘This is who I am and how I work’. I will not be the woman who found out she is autistic; I will be an autistic woman.
And that is what I did. New Doctor read my notes and asked me what my pain level was. I shifted in my seat, feeling rods pushing through my vagina and rectum, piercing my abdomen. Fire dripped down the front of my thighs. My hips burned as the smoldering ratchet bar inside my belly spread them apart.
“There is pain,” I answered her, finally standing up and kneading my legs and buttocks.
She touched her finger to the the words I wrote: “… please know that when I say that I have pain, what I mean is extreme pain.”
I added, “I would like to try to manage this with lifestyle changes and physical therapy first, before taking a medicinal route.”
I had rehearsed this sentence at least thirty times the evening and morning before my appointment. I used beloved television characters as role models and practiced using a tone and inflection that didn’t seem argumentative (I have often been described as such when I am simply trying to self-advocate). I looked in the mirror and worked on facial expressions, wanting to convey both my confidence and my humility. I did not want to seem arrogant or dismissive, which I have also been labeled, again, when trying to self-advocate.
New Doctor smiled at me. Adrian later explained that so many people go to the doctor seeking pain medication that I may have surprised her. But, if I could prevent this from flaring or escalating, why would I hide the pain behind an iron curtain of pills and injections? If I couldn’t, well, I would be the first to hang the new drapes.
New Doctor then looked through my typed list of symptoms before saying, “There is a nerve, the pudendal nerve …”
I was nodding vigorously. “Yes, pudendal neuralgia. That is what I think is going on here. If you look at my notes, you will see I have pain from sitting.”
New Doctor pulled up a website, one I myself had explored during my investigations. She looked back and forth from my supplement to the computer screen and finally back at me. “There are special cushions that may help.”
“I ordered a breast-feeding pillow that was recommended by someone in a PN support group! It has little sea creatures on it!” I exclaimed, excited that New Doctor believed me. She believed me. Also, I love sea creatures. They have always been one of my special interests.
“Perfect!” she said. “Now, I am going to get you referrals for an ultrasound and MRI, just to see what is going on internally. I will also set you up with a physical therapist who specializes in pelvic pain. Of course, we do have a pain specialist on staff who can provide you with medicinal care, if you should go that route.”
The entire appointment took less than forty-five minutes. I walked (shuffled, limped, whatever) out, referrals in hand, just as I had walked in clutching my notes. I felt like I was dancing.
I am an autistic woman. And I expect people to presume competence, even if the tools I use are different. I don’t need someone to speak for me anymore. I just need to be heard. I will bring my pen and paper, you will bring your open mind, and we will speak in a beautiful, flowing pidgin.
*I give great credit to New Doctor and her strong listening skills, the most important skills any medical professional needs.
*Please stay tuned for posts about my experiences with the referral visits.