Dear Doctor, I Wish You Understood Even Better Than You Do
Last updated: November 2021
As I’ve mentioned before, I am very grateful to have excellent healthcare providers on my team. My primary care doctor is vivacious and strong and smart, and she’ll never make me feel rushed at an appointment, even if her office is obviously busy. My neurologist may not be on any list of certified headache/migraine specialists, but she seems to keep up-to-date with research (which more than I can say for a lot of doctors!) and is open to hearing about how the illness is affecting my quality of life—she learns just not about the pattern of episodes I have but also about how they impact my present and my future. I’m not sure if she is a migraineur herself, but I know she has loved ones who are, and that always lends an air of extra empathy to each conversation.
My rheumatologist, whom I see for my psoriatic arthritis, is friendly and caring, even though I get the impression he may be quicker to prescribe medications than I’d like (I always want to go for lifestyle and dietary changes first).
Even the compassionate doctors don't seem to truly understand
So yeah. I’m pretty lucky.
All that said, I get the impression that none of my main doctors have a true idea of what it really means for me to deal with migraines week after week, month after month, year after year. I will mention my writing and advocacy work for Migraine.com when at an appointment, and I’ll mention some of the common themes, worries, and symptoms the community members talk about. I get the distinct impression that my doctors care about my perspective but have never visited the site, and that gets me down?
Why should it matter? If healthcare providers are compassionate, smart, and well-educated about the illnesses they are treating, why should it matter to me if they do or don’t explore this website?
Migraine and patients could all stand to learn more
I’ll tell you why: I think that, in spite of their great compassion and openness, we all have more to learn. I think I, as a patient, should be better educated about new medical studies and ways experts are beginning to better understand the migraine process. This information is at my fingertips, but I don’t take as much time as my colleagues here do to truly work to understand it.
On the same token, I think my doctors probably know a great deal about the clinical side of migraine but would benefit from reading some of the community discussions about how migraine impacts everyday life for us. I want them to read about weird side effects we feel from commonly prescribed medications, side effects that aren’t listed anywhere on the drug’s leaflet. I want them to read comments from people who feel alone and alienated because their loved ones don’t seem to understand how very real this disease is. I want them to look for patterns in symptoms and flare-ups to see if they might get a better grasp on some triggers that aren’t yet on those highly-circulated trigger lists.
Do you ever wish your healthcare provider(s) would read up more on migraine? Are there any Migraine.com articles or discussions in particular that you think would be especially enlightening for your doctor to read? Please share in the comments below!
Do you have a migraine toolbox for when an attack hits?
Join the conversation