How Migraine Disease Has Impacted My Life as a Man

I have been living with migraine disease since my teens. Back then, they were episodic. Unfortunately, I did not realize what was happening, which was the first negative impact the disease had on my life. I felt invincible leaving high school and entered college. The occasional ‘bad headache’ wasn't going to slow me down!

The impact of "tough it out" culture on men with migraine

I grew up as a Generation X male. I was taught that men were tough as nails. Injuries, headaches, or other illnesses were to be ‘walked off’ unless you were hospitalized. This mindset proved to be one of the most far-reaching impacts of migraine disease in men.

Migraine runs in my family. My sister, mother, grandmothers, and aunts all suffered with migraines, as do three of my daughters. Now, we understand the genetics much better. However, there is still a gender-related stigma associated with men who have migraine. The condition has long been considered a ‘woman’s illness’ due to how often it manifests in the female population. But migraine does affect males.

How gender stigma can delay diagnosis and treatment

Episodic migraine is easier to push aside when we are young, which is a dangerous thing. In my opinion, it is worse with males. In my circumstance, episodic attacks snowballed quickly due to gaps in medical treatment, because I was a man who refused to seek help.

As my attacks became more frequent, I knew they needed attention. My wife—my biggest advocate—encouraged me to get evaluated. My primary care doctor ran basic blood and urine tests, but their lack of specialization in headache disorders made the diagnosis agonizing. Because I am a man, my symptoms were seen as stress or lack of sleep, muscular issues, or even a tumor. If I were a woman, a headache disorder might have been considered earlier, likely within two visits, based on the prevailing demographics. It took years for me to find relief from what became daily attack cycles.

Navigating the medical system as a male patient

I eventually saw a local headache specialist who was so frustrated with my chronic migraine and new daily persistent headache (NDPH) that he said, “You’ll just have to live with your headaches.” This was from a specialist who not only agreed with my diagnosis but also had me admitted to the hospital on numerous occasions because of the severity and duration of my attacks.

I understand that there may be limits to a doctor’s skillset and knowledge. Still, I can’t help thinking my care would have been more comprehensive if I were not a man with an invisible disease. I finally found an excellent migraine specialist who collaborates with me on a treatment plan that is effective for me. On this team, I am a patient with headache disorders first. My gender is not the focus unless my symptoms present as something primarily male-centered.

The struggle to justify invisible pain in the workplace

Have I been taken seriously as a man who lives with migraine disease? Definitely not at first. I feel I would have been a more "credible" patient if I had a tumor or visible injury like head trauma. Gender stigma, on top of the stigma of migraine, delayed my diagnosis and effective treatment without question in my mind.

I was forced to justify and my experiences with doctors and my employer for 25 years. People expect men to push through and ‘walk it off’ by taking a few ibuprofen or acetaminophen. That mindset was a constant weight that dragged me down. Ironically, taking that approach led me into a vicious cycle of medication adaptation headaches, which made me worse. My wife and I fought with insurance carriers, doctors, and my employer to find the best treatment options.

Redefining purpose when migraine changes yoru career

Migraine disease takes so much from us. I lost time that I will never get back; time I could have spent enjoying my daughters, my marriage, my career, and social events. I worked in drugstore supervision for 35 years. My last ten years of work were the most challenging because I was a man with chronic migraine.

I lost respect from some co-workers and supervisors due to migraine. I was seen as "lesser" by many around me—even myself at times—but I did my best to press onward. I had always joked about retiring at 50. Migraine and the stigma and discrimination from my illness made that a reality for me. As a man, this hurt the deepest parts of me. How could I be unreliable? How could I not be a good provider? What is my purpose now? How did migraine erase my vibrance and put me on the shelf when I still felt like I had so much more to give and do? It just did and I am wiser from it in many ways.

Building a future of understanding for all genders

Please understand, I know women do not have an easy path to diagnosis and treatment. However, it may be a more clear experience overall, since migraine is seen as a ‘woman’s illness.’ My wife suffered terribly in her teens. I helped her based on what she said she needed during those attacks. But I didn’t really get it, and after we got married, I still struggled to understand migraine disease.

She raised our daughters while living with migraines. It wasn't easy for her, and I wasn't always helpful. Once I experienced migraine attacks firsthand, I understood and apologized for not being helpful. Sometimes we don’t know something until we experience it ourselves, which makes migraine disease more complicated. I know how awful living with a headache disorder can be. We all suffer differently. Sometimes we suffer together, and other times alone. But make no mistake: it is not easy, whether you are a man or woman, boy or girl.

I’m thankful for my current treatment, and encouraged to see migraine and other headache disorders finally being recognized and studied. My hope is that ongoing research leads to better understanding, more effective treatments, and, most importantly, improved quality of life for everyone affected by these conditions.