Invalidated, Invisible, Inspired
It wasn’t like I had a brain tumor.
This is what I remember most from my first trip to the student health center the first semester of my freshman year. The doctor loudly exclaiming outside my small sterile examining room that “it wasn’t like [I] had a brain tumor.” He continued to talk about me pejoratively and minimized my pain for a few more minutes prior to re-entering my room. This was not the first migraine attack I had experienced, they had started in high school, but I was a thousand miles from home and had never been in this much pain for this long. Like so many people with migraine disorders, my father and my grandmother had migraine attacks so they were all too familiar. However, this was the first time I felt shame and embarrassment around my migraines.
These events occurred 30 years ago and I still live with migraine attacks. Sometimes they are worse and sometimes they are better. Migraine attacks have become a constant in my life, one I have had to adapt to. What has also become a constant is living with other people’s opinions and thoughts about my invisible and incurable disease. Some people I have encountered over the years have been kind and understanding. My graduate school professor supervised me one summer on his own time when I couldn’t afford to pay tuition since my CT Scan for my migraine attacks wasn’t covered by my insurance. Yet other people have made me feel like my migraine disorder is my fault. They have suggested that I am doing something wrong and that if only I saw a different doctor or tried a different treatment maybe this problem would go away. Missed family and social events, days spent in bed, and times of lowered productivity at work along with these feelings of blame have made me feel the need to hide my migraine disease from others. Only once I became an advocate at Headache on the Hill did I realize that this need is a result of stigma.
Migraine: What’s the big deal?
Although 12% of the American population is impacted by migraine disease and it is the second leading cause of global disability, only a small percentage of affected Americans seek appropriate medical care. One reason is likely the stigma associated with migraine. Because migraines cannot be seen, some people, including doctors, seem to think the pain and associated migraine symptoms aren’t real. That invalidation may lead to people with migraines not seeking help; they may feel ashamed for the invisible pain and difficulties they can’t control. The migraine community has begun talking about stigma – this is an important first step, but we still have little research on the experience of stigma. Studies on other chronic illnesses indicate that stigma can lead to increased mental and physical health difficulties as well as lower quality of life. Stigma also appears to undermine people’s ability to ask for help or support from people in their life or physicians.
Migraine: What can we do?
As a patient, I was told my migraine disease wasn’t serious because it wasn’t cancer. As a parent, I have watched my own children experience migraine attacks, missing school and the social and extracurricular activities that as children and teens they should be enjoying. And as a scientist, I know that we don’t yet understand how stigma related to migraine affects either the disease itself or daily life. That is why my colleagues and I at Wayne State have begun a study looking at how peoples’ experiences of stigma impact their lives, their happiness, their work/school, their relationships, and their willingness to seek care. I hope that you will be willing to participate in this study, whether you have felt stigma or not.
What I hope for my children, and all of us that experience migraine attacks is that we don’t feel blame as a result of this disease. The more we know and understand, the more difference we can make. Knowledge will allow us to advocate for the migraine community and to educate others so that my children and yours hopefully never feel shame or blame for their migraine.
To participate in Julie’s study, please visit: https://waynestate.az1.qualtrics.com/jfe/form/SV_a8Luv693mza0c1D
You will be taken to an anonymous survey that should take 30 to 45 minutes to complete.
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MEET THE AUTHOR
Julie Wargo Aikins is a research scientist and a chronic migraine patient who lives in Detroit, Michigan. She received her Ph.D. in clinical psychology from Pennsylvania State University and her undergraduate degree from Duke University. Her work over the years has primarily focused on the role of parents and peers in influencing children’s well being but she was recently compelled to apply her research training to the study of migraine stigma. Julie is an avid basketball fan (go Blue Devils!) and mother of two teenagers. When not pursuing her research, Julie can most often be found cheering on her children, either on the sidelines of a soccer field or at a robotics competition.
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