What Community Support Means With Chronic Migraine

I recently attended a giant conference in Vancouver. I not only was speaking at the conference, but also was participating in a booth in the vendor hall, so there were lots of lights, a symphony of smells, and a cacophony of conversation.

Traveling itself is a nightmare for me: The bending to pack and unpack (I often can pack for only five minutes at a time), the motion sickness and overpowering air fresheners in the Ubers/Lyfts, the hefting of my luggage around the airport, the mask-wearing, and the generally long and exhausting days.

It was a miracle I made it there and a second miracle that I made it through the conference.

You see, I have persistent and too-often severe chronic migraine. That means I have an incurable condition rated in the most severe category of disability, and, for me, it means that I have had migraine every day except for one since December 2019. (No joke.)

Migraine is a massively misunderstood and underestimated illness, and those of us with chronic migraine often endure all the time a level of pain that is inconceivable to those without chronic migraine. It manifests as a non-apparent disability, so people don’t realize the level of debilitation happening underneath the surface. Additionally, migraine is predominantly viewed as a “women’s disease” and thereby minimized, dismissed, and erased (not to mention how underfunded migraine research is). Those who struggle with it often are treated as if they are fabricating their suffering or are somehow responsible for their condition (yes, this has happened to me many a time).

Although I have struggled with this illness and associated disability openly for over a decade, I only recently have been taken more seriously by my communities, due to my opening up more about it and advocating more forcefully for support for me and others with this disease.

Sadly, it often compounds my pain to have to explain to people that I have this disease and what it means for me. I often feel forced to share details of my personal medical situation in order to be believed and to avoid negative judgment. And then I of course get the unsolicited advice from well-meaning non-chronic migraineurs, so then I have to explain more and sometimes even debate with them (as if my reality is up for debate!). It is exhausting and, ironically, migraine-inflaming.

But it has been crucial to me getting the support I need. And even more importantly, it has been crucial to me being seen and valued, which is essential for a sense of belonging.

I came back from the conference exhausted but overwhelmed with gratitude. I had felt freer than I have in many years among colleagues and in my profession. And here’s why:

A number of people approached me with care and concern. They had noticed that I had gone quiet on socials over the past year and knew something must have been up. They had read with open minds and hearts my subsequent posts about my struggles with chronic migraine (check out #ChronicMigraineChronicles on Twitter, LinkedIn, and Facebook if you want to catch up). So they immediately made space for me as I am and dug into their discomfort by asking how I was doing. When I shared my grief, they honored it. They made me feel cared for and believed.

Some of them who struggle with migraine/chronic migraine commiserated without conflating their experience with mine.

A number of my friends and colleagues asked what they could do to support me during the conference. They looked out for me with love, urging me to eat and take time away from the conference to rest. They accepted my need to keep my stress levels low. They understood when I was late because I was trying to sleep off migraine. They got a plate of food for me and saved it for when I could show up. They asked what would nourish me. They helped me set up my materials. They took the initiative to fill my water bottle so I didn’t have to get up, and they went and got me snacks and tea for my flight. (I even ran into a colleague on the plane who texted me from the other side of the plane to offer me positive wishes and the OTC meds she had on hand.)

They reminded me that I don’t owe anyone anything (including posts like this to raise awareness) and acknowledged my resilience. They didn’t just see my disease; they saw who I am and how I face my disease, and celebrated my strength, compassion, and generosity. Having a daily debilitating disease like chronic migraine can keep you focused on what you can’t do and who you can’t be, so to have friends marvel at what I can do in spite of this illness and champion who I am was balm for my weary soul.

I share this not just so you might see ways you can show up for people in your life with chronic migraine or other chronic and non-apparent diseases. But also so I can remind myself of what sort of community support helps me live my life in an honest way that honors my struggles as well as my strengths.

Merriam-Webster defines “community” as “a unified body of individuals.” Sadly, sometimes, it is not our illness that keeps us from living important parts of our lives. It is the community that insists we travel through life with them and like them; that we unify with them on their terms.

I am grateful for all those who unified with me during this conference on my terms, courageously joining me on my often difficult journey and doing what they could to make my journey a little less difficult. You matter. And your actions reminded me that I matter, too.