To Be Non-Binary And Have A Chronic Pain Condition

In the fall of 2013, my now wife saved my life by entering a domestic partnership with me.

We had only been dating for a few months, but we knew we were a match. And really, I needed her insurance. So in an apartment in Chicago, over a celebratory cookie, we signed the paperwork.

There are two important things that people close to me know. The first is that I’m non-binary trans. The second is that for the last 10 years, I’ve had a migraine or headache almost every day.

A migraine came with me on my first date with my wife. I had a migraine a year later on a sunny afternoon when we said “I do.”

I had a migraine the rainy night my high school best friend called and told me our other best friend had been in a car accident and was in a coma.

I had a migraine the spring evening a nurse came into the hospital waiting room and told us that my sister gave birth to a healthy baby girl. I notably didn’t have a migraine the night my brother-in-law texted a picture of our second niece a cold February night two years ago, but I had a sip of champagne to celebrate that triggered one 20 minutes later.  

I had a migraine the night I accepted my first journalism award in Chicago. It was fitting. Almost every story I have written, I have written on a migraine or a headache.

I have spent a lot of time trying to remember myself before migraines.  I have a sense that my mind was sharper, more able to process the people and events around me. I reach for words all the time now, only to find them gone. That’s common with a migraine, I’m told.

I try to remember my social life before every cancellation and refused drink was attributed to headaches. I aged more quickly, forfeited a lot of queer community gatherings in loud and crowded clubs. My wife stayed on the couch with me probably more nights than she liked.

When my migraines started in 2008, they were like warning shots in the dark, spread out between days. But they crept closer and closer together until life was one migraine. According to doctors, that is what “going chronic” looks like.

When my wife took me on her insurance five years ago, she opened a door to treatment I would never have had. In 10 years as a reporter, I’ve had just one media job offer me health insurance, and I couldn’t afford their plan on my salary.

When we moved to Boston, my wife’s insurance and job gave me access to a specialized headache clinic that was difficult to get referred to. There, a test ranked me at double the qualifying score for the highest level of disability with a migraine.

The doctor told me that my brain had become addicted to pain. My head was like a sailboat that had tipped over, he said. Most people with migraines were like boats in a storm, rocking back and forth, waiting out the pain. My sailboat was floating upside down. It would take everything in his arsenal to right it.

My wife has worked endlessly to help me find trans-affirming primary care, but with headache doctors, you don’t have a choice.

I’ve spent a lot of time getting botox injections in my neck from doctors who don’t know what to do about my binder. I had the same problem on a year-long clinical trial where a very clueless cisgender man had to lift my binder every few weeks to take EKGs. I am usually hospitalized once or twice a year for migraines, and in hospitals, binding is not even an option.

Slowly, I have crawled from a bedridden state to upright, from sick every day to a base level headache with migraines scattered in between. While it hasn’t fixed my headaches, specialized treatment has given me my life back. Sometimes now, I don’t have a headache at all.

When I moved from Boston to LA last year, my doctor told me that most of her patients are too scared to move once they get into a headache clinic. Clinics are hard to get into, and moving from one to another is risky.

For most of my life, I didn’t want to get married. I thought marriage was an antiquated patriarchal institution. I surprised myself when I wanted to marry my wife. It wasn’t about legal rights or practical gains. I just really, really, really wanted to marry her.

But what if I didn’t want to get married? What if we never met?  

Would I be writing at all today?

I report on trans healthcare, about the people who are like me but maybe not married. Or maybe not insured. Or maybe don’t have people in their lives like my wife who will spend hours on the internet and the phone to find them a doctor who won’t turn me away now that the Trump administration is legalizing discrimination in healthcare.

This weekend, my third niece was born. I celebrated with a beer. I didn’t have a headache after. Somehow, I don’t feel better.