Disparities in Migraine: Deborah Y. Turk’s Experience

I have been living with migraine disease for more than 25 years. My disease went from episodic migraine to my current diagnosis of intractable chronic migraine. I had one young child when my migraine attacks began, and I now have three adult children and a grandchild. I went from working two jobs at the time of my first ER visit to being permanently disabled today. And I went from taking ibuprofen to taking medicine that has made me gain weight, lose weight, feel like I was losing my mind and made me want to lose my life.

Migraine has affected every aspect of my life. I know that I have this in common with the migraine community. What else do we share? The stigma of an invisible illness and migraine stigma. Our suffering, in the eyes of others, is diminished.

Another Dynamic

However, being a black woman living with migraine adds another dynamic to my experience. For the most part, I feel that I receive quality treatment for my migraine disease. But it has been a long and sometimes, painful trek. It didn’t take long in my migraine journey for me to experience my first incident where an ER doctor spoke to me in a disrespectful manner. I didn’t know anything about migraine at that point, and he wasn’t about to enlighten me. I wanted to leave, but where was I going to go? And I was getting scary “headaches,” so I needed help. Plus, central New York, where I lived, was so blatantly racist, I didn’t feel that I would get anywhere protesting, so I kept my mouth shut.

>Many BIPOC experience disparities in treatment based on their ability to pay. There was a time when I had a gap in health insurance and my only choice was the city health clinic. I am grateful my hometown has these clinics; however, I had to arrive by 7am, stand in line for an hour and a half, sit in a giant waiting room for hours with a lot of people — and with children running around. Not the best place to be when you’re experiencing a migraine attack with no medicine. There was no neurologist there.

When I received insurance and sought treatment at the neurology clinic of a hospital, I kept seeing different residents. I would call and leave messages and never receive a return call. It took four years for someone to tell me that I was eligible to see a steady neurologist — that was after I expressed frustration to a member of the office staff.

Disparities in Migraine

The ER is a place I avoid as long as I can. Two times, at two separate hospitals, I was not given a room. At one, I was placed 3 feet across from the busy nurses station, under bright lights. When I protested and said that I was supposed to be put in the dark, I was basically told to take it or leave it. Not even a pretense of sympathy or empathy.

It made me wonder: If I was not an inner-city black woman with Medicaid insurance, would I have received the proper treatment? Recent studies show that people in and entering the medical field still believe that black people have a higher tolerance for pain than white people. This harmful belief goes back centuries. When we seek treatment, our complaints are sometimes attributed to mental illness. That hit close to home. My daughter experiences episodic migraine, and once, when she went to the ER, they told her she just had anxiety and sent her home.

Cognitive functions are affected in each phase of migraine. That, coupled with many people’s belief that the intelligence of persons of color is inferior to that of white people, has at times given me pause when talking to those in the medical field. I think: Did that come out right? What is he thinking? It doesn’t help a person’s self-esteem. I don’t hold back anything, but one can see how BIPOC persons with lowered confidence may hold back when communicating with white practitioners.

My Experience

Many BIPOC are hesitant to trust those in the medical field and when you consider the history of this country and some of the atrocities and injustices that have been committed against African Americans in the name of medical science. Most doctors are white, the race of those whom they consider their oppressors.

In 2018, my former neurologist prescribed me an overdose of a migraine preventive medication which made me very sick. I crawled because I couldn’t walk, was dizzy and experienced other graphic side effects. I couldn’t reach him, so I finally contacted the hospital. That didn’t sit well with him, I guess. Some months later, I found the diagnosis of a mental illness in my record. I went to medical records and had the original note pulled. On a blank sheet, he typed that I was angry, abusive, hung up on his office staff (blatant lies) and had personality disorder. I have been trying to get this rectified, but I cannot get justice.

The stereotype of the “Angry Black Woman” is not new. It’s widely accepted and was applied to me. The hospital protected him, and the state board of medicine wouldn’t cite him, even though his action was unethical and illegal. He slapped that fraudulent diagnosis on me, knowing it will follow me the rest of my days. I am not a woman of means; no friends in high places. He is getting away with it. I discovered another note, written earlier, stating several negative things about me. And I was shocked. I thought we had a good relationship. On consideration of our previous interactions, I concluded that my self-advocacy was a problem for this older caucasian man.

Trust

Do you think that experience has impacted the way I view white (especially male) doctors? Absolutely. I have a wariness that I didn’t have before. As a member of one of the historically least valued and protected groups in this country, I completely understand the hesitancy of others like me to trust those in authority.

The day must come when practitioners are held to a universal standard and held accountable when they don’t meet that standard. But to end the disparities in migraine treatment for people of color, trust needs to be established. Attention needs to be given to the factors that contribute to the underserved members in our community who do not have access to the care they need to live a fuller life with this disease. Race is a factor, but it is not the only factor. We are making inroads but there is much work that needs to be done in order to get to where we need to be.

Written by:
Deborah Y. Turk
Patient Advocate