Patients from the Department of Neurology's Headache School often ask, "How can I help my doctor understand what I'm going through?"
To help us address this relevant question, two of our faculty members volunteered to tell their stories.
In part one of this two-part series, we interviewed Dr. Liam Clark about his experiences with migraine, his advice for other people who live with migraine, and more.
Both Sides of the Story (Part 1): Two Neurologists Specializing in Migraine Who Have Lived with the Disease for Decades
The Department of Neurology’s Headache School isn’t only a resource for those with headaches and migraine to learn more about their condition and options for treatment—it’s also a resource for our providers, as it allows them to know what their patients’ top concerns and questions are. One of the topics frequently brought up is “How can I help my doctor understand what I’m going through?”
Migraine is a unique specialty in neurology; it’s rare to encounter working neurologists who have experienced the condition they seek to treat and research. That’s because few neurological conditions that physicians could experience would also allow them to keep up with the rigorous demands of clinic and hospital work, research labs, and publications. (For example, a stroke or ALS diagnosis wouldn’t allow for this.) However, while migraine may not preclude a demanding schedule, “migraine is consistently ranked within second to sixth when categorizing the conditions behind disability,” according to Dr. Liam Clark of the Headache and Neuro-Ophthalmology Division. It’s clear that this disease is much more than “just a bad headache.”
In order to best help other healthcare providers understand the range and nuances of migraine, two members of our Headache and Neuro-Ophthalmology Division volunteered to tell their stories. In part one of this two-part series, we interviewed Dr. Liam Clark about his experiences with migraine, what advice he has for other people who live with migraine, and more.
When did your headaches or migraines start?
My migraines started when I was about 14 years old. I was hiking with my dad, and I started to go blind. Then I had this weird pain and nausea. I thought I was going to die! I didn’t get diagnosed with migraines until a few years after that.
You can let us know what topic you'd like our experts to discuss in an upcoming Headache School session!
How did headaches affect your career goals?
My personal experience with headache has given me an experiential touchpoint—I do kind of know what the everyday challenges are like. People talk about “absenteeism”, missing work due to migraine, but people also struggle with presenteeism—showing up to work and school while unwell due to a sort of performance pressure, even though showing up might not be productive and could even bring negative consequences. The thing about headache that I like in my career is that you can help people really get better, so that they aren’t missing out on their lives as much.
How does your personal experience inform your patient care?
I find it easier to empathize and understand, especially when my patients describe sensations as well as the locations and the severity of their pain. It can be hard to get people to understand what you are feeling and going through, especially when there isn’t a cast or a big wound to show, but migraine disability has been studied, and it is up there with paraplegia in terms of how severely it can affect people. I get that.
Advice from one headache experiencer to another?
Unfortunately, it seems like there will never be enough headache and migraine subspecialists to see everyone. As a result, there are a lot of misconceptions about the condition in the medical and lay community. Therefore, it’s very important to be your own advocate: look into your condition, research it, and take your questions and what you find to your doctor visits—what you find can empower you. Especially when you’re trying to learn how to better take care of those things within your control, like your diet, hydration, sleep, triggers, and stress management. Headache advocacy, that is, helping to spread the word and get more funding for research, changing laws so that people with headache can more equitably access care – those things are also really meaningful experiences.