Why I Talk About My Life With Migraine

I’ve started telling everyone about living with migraine.

When I make plans, whether it’s with a close friend or a new acquaintance, I explain that I’ll be there unless I have a migraine. When I’m too sick to go out to social events, I insist my husband explain my absence. “Sorry I didn’t get back to you sooner, but I’ve had a bad run with migraines,” I write in overdue follow-up emails to strangers. When people ask how I’m doing I try to tell the truth, to give details and to be entirely honest. I tell people about physical and emotional symptoms, about treatments and about how it feels to live with migraine.

 

When I start to feel self-conscious pointing it out over and over to friends and strangers alike, I think about the rest of my life when I didn’t tell anyone.

I want you to know that I spent decades deeply ashamed of having migraines. I thought if I could just be more relaxed or find my triggers then I would stop having attacks. Like so many people, I was first misdiagnosed with stress, depression and teenage angst. I was healthy – all the medical tests proved it  – therefore I couldn’t be sick. For years I chastised myself for the pain. When I hurt I pushed myself harder. The times I cancelled plans I felt crushing guilt. I thought I was lazy. I thought the migraines were me and I accepted all the things they forced me not to do as my personal failings.

Even after being diagnosed with migraine I thought that if I followed the doctor’s instructions well enough all the symptoms would go away. When I didn’t get better I blamed myself. And I was unsure if I really was sick. The doctor didn’t explain that migraine is a neurological disease with no cure. When asked if I had any medical conditions I would usually answer no and then add, “Well, I get migraines.” My voice always rising at the end, making it more of a question than a statement. As if I were asking, “Does that count?” I still talked about my pain as little as possible and to as few people as possible. I was still ashamed.

Ironically, it was when my migraine attacks got worse than ever, when I was almost constantly in pain, always having other neurological-related symptoms and could hardly leave my house that I finally began to understand my disease and shed the burden of guilt.

I’ve spent the last three years sicker than usual, but also reading and learning, listening to other people living with migraine, and growing and becoming stronger. Through medications and supplements, diet, exercise, physical and mental therapy, incredibly supportive family and friends and probably a large dose of luck, I’ve crawled up through the muck and mire of near constant attacks to feel the warmth of more symptom-free days.

The truth is that I started talking about my migraines somewhat by accident. I was so sick that I couldn’t hide it or downplay it anymore. But then a funny thing happened: in explaining my symptoms to my close friends and family, I learned more about living with migraine. I started to be able to see things as symptoms rather than just my “strange quirks.” They had questions I couldn’t answer, which pushed me to learn more. I was fortunate that they were also very supportive, and sharing my illness helped to deepen our bonds.

Now, it’s no accident that I tell everyone about living with migraine.

I talk about it for myself. Saying it out loud, recognizing the disease, confronting the reality again and again reminds me this is real. That it’s not “all in my head” or my fault or unimportant. When I tell strangers or new acquaintances why I was late responding or why I cancelled or why I seem out of sorts, it takes the burden off me and puts it on my illness. It reminds me I am more than my disease.

I talk about it to help people understand. Migraine really is an invisible disease. When you’re in so much pain it can be hard to remember that other people can’t see how sounds, smells or lights are magnified. They can’t feel the pounding in your skull. People who don’t have migraine can’t feel the brain fog or understand how difficult it can be to form complete sentences. Sometimes, when I describe my symptoms or answer honestly when someone asks how I’ve been, I worry I sound like I’m just whining. I’m not, though. I’m stating facts. I want other people to understand the scope of migraine symptoms and the complexity of living with this illness. I hope that my words will help make migraine visible and tangible.

I talk about living with migraine in the hopes that I can reach someone who still fears talking about their life with migraine, who still wonders if they really are sick, who still thinks that maybe all the pain is their fault. I talk about it in the hopes that someone will see their pain as valid and they won’t feel quite so alone anymore.

I’ll keep talking about living with migraine because, no matter what happens, I know I don’t want any of us to live in the shadows anymore.

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Thinkstock photo via DGLimages.