Navigating the World as a Queer Black Migraine Patient

You’re always told, “If you’re not feeling good, go to the doctor; they’ll take care of you.” For many marginalized groups, that’s so far from the truth.

How My Experience Started

From a very young age, I was introduced to the harsh realities of the U.S. healthcare system and how they treat young, LGBTQIA+ and BIPOC patients seeking care. I’m a transracial adoptee, meaning I was adopted into a family of a different race than me. In my case, I’m Black. The person who adopted me, whom I came to call my dad, was white. This also meant that I knew nothing about my medical history due to the nature of my adoption — nothing to tell doctors who always asked about my medical history. The unknowns were terrifying.

When I was younger, I didn’t think much about that, but it really came into play a lot more when I was older, and doctors would ask me about my family history, and I would awkwardly have to say, “I don’t know. I’m adopted.” While my dad was a huge advocate for my care while growing up, it all went out the window when he passed away from small cell lung cancer my second year of college. Whenever I had a sniffle or something off with my health, he took me to the doctor for answers. As I got older, however, I noticed that I was treated very differently by doctors.

When I was in high school, I started experiencing intense pains around my chest/ribcage that flared up monthly and became worse when I moved and/or took deep breaths. After a few months of the pain getting worse, my dad took me to the ER to hopefully find some answers. After hours and hours of testing and exams, the results came out fine or inconclusive. My dad wasn’t satisfied and asked the ER doctor to clarify what else could be causing the pain. The doctor asked my dad to step outside the exam room, and I overheard him tell my dad, “You know she’s probably doing it for attention. We see a lot of these cases. And if she’s not, we’ll just call them growing pains.” That was a pretty low point in my life and my first introduction to medical bias as a young Black woman. I was forced to live with the pain that would interrupt my daily life from that day forward because doctors didn’t believe my pain since the test results showed I was “fine.”

A few years after that incident, my father, unfortunately, passed away, and I started experiencing frequent headaches during college. I thought nothing of them at first. Then a few months after I graduated college, I started working full-time as an event planner, and I had my first full-blown migraine attack in the middle of a Halloween corn maze with my girlfriend and our friends. I was hit with extreme nausea, debilitating head pain, and sensitivity to light and sound (though at the time, I didn’t realize what I was experiencing was a migraine attack). After this happened a few more times, I was encouraged to see a doctor by family, friends and coworkers.

Becoming a Migraine Patient

I wasn’t looking forward to it because I was so afraid of not being believed again. But I knew that I had to try. So I made an appointment with my primary doctor. I explained my symptoms, and the first word out of her mouth without looking up from her screen was, “It’s probably just stress or anxiety.” She sent me home with no concrete answers, left me defeated and confused, and prescribed me an anxiety medication. Nothing for the pain and certainly not any exams or tests to get down to what was causing the pain. Just gaslighting. The migraine attacks kept coming. I was canceling plans on friends and family left and right, and struggling to keep up at work. I started to get anxiety when I was invited to things because I was afraid I’d be unable to attend due to the unpredictability of my migraine attacks. I felt like a failure on so many levels. I was young, so why was my body failing me when so many others my age were “fine” and out living their lives? After months of research and asking around, I decided to talk to a pharmacist. After describing what I was experiencing, she was the one who suggested I could be experiencing migraine attacks and that I should see a specialist.

Now that I had a potential name for what I was experiencing, I could start my long journey of getting an official diagnosis. This also came with its own struggle of 8-month waitlists to see specialists, going out of state to get treatment, denials for treatment from insurance and other things I was not prepared for. While others my age were going on vacations and saving for weddings and homes, I was spending my vacation days in doctors’ offices, spending ridiculous amounts of money on medications or new treatments, or curled up in a dark room in excruciating pain. I’ve been through a lot during my journey to treat my chronic migraine. And in the beginning, it was incredibly lonely.

Thankfully, I had the support of my amazing partner, who was always there with ice packs or my designated migraine driver when I was unable to function, and my doctor appointment backup. But I didn’t know anyone my age going through this, let alone any queer Black women. And if they were, no one was talking about it. I wasn’t treated great when seeking treatment either. Doctors would continuously tell me it was due to my lack of exercise, diet and stress levels that caused my pain instead of giving me medicine to help treat the pain. I had to frequently bounce around from doctor to doctor to find someone who would listen (which with insurance barriers is never an easy issue).

Being A Queer Black Migraine Patient

I also have to come out every single time (awkwardly) when I see a new doctor and remind them about pronouns and then be met with awkwardness or an uncomfortable visit, especially if my partner is with me. Which still doesn’t touch what nonbinary and trans patients go through. Being a queer Black woman navigating the healthcare system also comes with a huge burden. And for me, I also acknowledge the privilege I have as a light skin Black woman with access to company health insurance, so my experiences in the healthcare system tend to be very different from those of a darker complexion and those with limited or no insurance. I can’t speak on those, but I do hope we highlight the experiences more of BIPOC, immigrants and LGBTQIA+ patients. I had a few instances at a specific neurologist’s office where I was treated differently than other patients and put in uncomfortable situations.

From constantly being shot down when I spoke up about wanting to try something stronger for the pain (“We don’t want you to become addicted.”) to personal remarks about how “You don’t cry when you get needles like some other patients.” A comment was even made about my natural hair at one point. She asked me how she was going to find my head under all that hair during a Botox for migraine appointment. Another time when I went to the ER for treatment, I happened to be wearing sunglasses when my partner and I tried to check-in due to the intense migraine attack I was experiencing. The receptionist the entire time was cold and rude, while I was visibly uncomfortable and trying to express what I was there for. My partner had to step in a few times when I had trouble. When we finally were checked in, we noticed the receptionist’s mood changed dramatically toward other patients coming in with more visible injuries. Since that incident, I’ve avoided emergency rooms when it comes to migraine.

Feeling Less Isolated

I’ve been through ups and downs during this journey. Numerous doctors, countless treatments, issues with insurance, terrible side effects and medicines not working. And so much time and money I can never get back. I spent my twenties in hospitals, doctors’ offices and curled up in dark rooms in agonizing pain while my peers were out getting to experience their youth. I was ashamed for a long time having to explain to family and friends that I was canceling plans due to a migraine attack or not being able to confirm if I was attending or not. I had an invisible illness that no one could see, very few could understand, but the pain I felt was intense and debilitating.

Through social media, I’ve connected with other patients living with migraine and chronic pain, which helps makes the experience feel less isolating. I’ve been able to work through that initial shame I felt in the beginning (that comes from society’s judgment on those living with disabilities and chronic pain) and morphed it into patient advocacy. Through there, I’ve been able to share my story and amplify voices within the chronic pain and migraine community, specifically focusing on Black, Indigenous, People of Color and LGBTQIA+ patients. I’m really excited to say that I started working with the Global Healthy Living Foundation (GHLF), an organization that is helping improve the lives of people living with chronic disease in June as their BIPOC Patient Advocate, Community Outreach Manager. There, I plan to continue to amplify the voices of patients from marginalized communities.

More Work to Do

Another harsh reality of being a LGBTQIA+ BIPOC migraine/chronic pain patient is that organizations, communities or other patients within those groups are sometimes not very inclusive. That can turn the community or space where people come together to get support into a very unsafe environment for many Black, Indigenous, and People of color as well as LGBTQIA+ patients. I’ve been in certain spaces that claimed to be inclusive, but then the patients engaging with me or with the content claimed that racial bias in medicine doesn’t exist, that we were just asking for special treatment, or they would just upfront make racist or transphobic comments back to me. That is the sad part about the chronic pain communities.

There is a lot of good that can come from them — education, support, resources, advocacy. I know that there are some out there that are committed to making sure their spaces are as safe as possible, but we have a lot of work to do to make sure we are doing right by marginalized communities and shutting down abusive, racist and transphobic comments. Healthcare should be accessible for all and there should be safety when trying to get support.

By no means has this been easy, and I will continue to fight for equity in healthcare. Not because I want to, but because I have no other choice. Because everyone deserves equal access to treatment.

Written by:
Reneé Shaw
Global Healthy Living Foundation