This afternoon, a colleague I’ve worked with for over 10 years asked me how long I’d had migraines. I told him about 45 years now, and he looked at me in disbelief. He asked how long the migraines lasted, “minutes, hours?” I appreciated his question but knew he didn’t have the time or, understandably, the interest in a complicated answer that would have to include that they can last weeks or even months, in my case.
He asked if alcohol or marijuana provided any relief or took away the migraine. I told him, quite candidly, that a glass of white wine could calm the anxiety and sometimes ease the neck pain, but that, no, neither of these was any cure for a migraine attack.
We were forced to leave the topic at that point, but I’ve been thinking about the exchange ever since. This colleague is an exceptionally intelligent, well-rounded man in his 40s, and this is the level of understanding he has (and still most have) of this debilitating disease. Surely, I’m not blaming him. In fact, if he’s never known anyone with Migraine, why would he be expected to know more?
However, if I were to have said I suffered from Type 1 diabetes, for instance, would he probably have had more of a sense of what that meant for my day-to-day life and my future; I think so. Again, certainly not a fault of his, but I wonder where the fault does lie and know that the answer to that is complicated, as well.
We were working at an open house for our college, and the mascot came by. We laughed a little, and he told me about a student he’d had years earlier who had received a full scholarship to a prestigious university when she agreed to “go to “mascot camp” and become the school’s official mascot. That immediately reminded me of when I was the “Golden Eagle” for my high school in upstate New York. I was not "The Eagle" because that’s what I wanted to do to represent my school but served that role as a result of what migraine took from me.
I’d been a captain of our volleyball team and a freshman starter on our varsity basketball team, but by my sophomore year, migraine stripped away my ability to participate in these competitive sports. My participation in all sporting events was reduced to becoming the school mascot. It saddens me even now all these years later to think of that.
So, what else does chronic migraine strip from us? We all have our answers, our anecdotes. Those are some of mine from 44 years ago. Today, they are different.
Dr. William Young, a professor of neurology at Thomas Jefferson University, cites one of the most significant sacrifices for those living with migraine. In 2016, a survey by a medical insurance provider found that just 22% of employers deemed migraine to be a “serious enough reason for an employee to be absent from work,” lower than for any other reason, including depression, anxiety, stress, the flu, or the common cold. People with migraine must choose which parts of their lives to sacrifice, frequently prioritizing work over others (social, personal, leisure)” (Young).
While I hope that percentage has changed over the past six years, I do know that the serious problem with work, health, and social life balance remains. I know I sacrifice a lot of social opportunities to reduce any triggers that might impact my work life. I rarely go out at all during the week anymore and tend to miss out on a lot of events with my friends and colleagues as a result.
Dr. Beth Morton, a dedicated migraine advocate, who hosts Migraine Chat on Twitter and a thoughtful, genuine, and well-researched blog The Counterfactual Brain, shared in one of her articles in 2018, “When I look back on the last five years, dealing with two chronic illnesses has taken a lot from me, but the loss of social connections is what has been hardest… That all said, it sometimes feels like if I didn’t initiate contact, I could go weeks not talking to anyone but my family. I suspect it is partly that people are busy or dealing with their own struggles, partly that my situation now makes me both socially and geographically isolated, partly that they may not want to hear about my poor health” (Morton). We often sacrifice relationships and long-term connections.
Morton’s article makes an important point, though, that while friends and sometimes family may not reach out either because they don’t want to hear about all of our health problems, they may not also because they don’t feel like we want to hear all the productive, positive things that may be going on In their lives when we are suffering.
She goes on to argue that isn’t true, that while it’s human to sometimes be jealous and wish for more, those suffering do want to hear about others, want to talk bout the things we still have in common, and just want to be connected.
While I may not be able to play sports anymore, I am engaged with friends and family over lots of sports conversations. I do have loving and supportive friends who “get” migraine as best they can and are willing to hear and always learn more about the disease and how it’s changing in me through the months and years.
If you suffer from migraine, reach out in whatever way you can to someone you care about and want to reconnect with. If you know someone with migraine, do the same…
Maybe I’ll get the chance to reconnect with my colleague and tell him a little more about migraine but then turn to his family and our shared love of literature. Maybe, too, I'll share some amusing but memorable anecdotes from my time as a high school mascot. It's rather interesting that these have actually stayed with me more than any individual moments from my volleyball and basketball days.