Image Credit: Getty Images/ Petar Paunchev
Shot of woman's legs walking towards a brighter part of the woods symbolizing her turning a corner with migraine

Coming Out Of The Dark: Coping With Isolation In Migraine

Reading time | 4 mins

For more than a decade, I lived with migraine in silence.

I’m not alone. Many of us who live with migraine know the truth. Not only do we hide behind sunglasses, in dark rooms and behind blackout shades, but we also hide our migraine lives from the world. Many of us are isolated and in the dark, literally and figuratively.

I’m the perfect example of someone who lived in hiding and suffered in silence for years. There are many reasons why I stayed quiet. The nature of my illness paired with the general public’s misunderstanding of the word “migraine,” and my own insecurities around my illness are all partly to blame. These issues made me shy away from sharing my story. But, over time, I’ve learned that I’m strong enough to handle how people may respond to my experience. 

Finally, I’m ready to share.

Migraine is inherently isolating

As much as I lean on family and friends to help me during my worst migraine moments, migraine is a solo battle. It’s an inherently isolating condition.

Although my mom would love nothing more than to take away my pain and cater to my every need, she can’t bear the pain for me. Only I can coach myself out of bed each morning when my head feels cemented to my pillow. Only I can get myself through a business meeting when my pain stabs my eyes. Only I can try to stay positive when I’m lying on the cold tile of the bathroom floor, sick with nausea and pain. I must endure — on my own. No one else can do it for me.

There’s something both saddening and empowering about the solitude of migraine. And it doesn’t help that my pain draws me to my dark, quiet bedroom, isolated from the outside world.

Migraine is misunderstood

Many of the people in my life don’t understand why I hid my illness for so long. In my opinion, I hid because the general public has an inaccurate understanding of the word “migraine.”

Over the years, I’ve discovered that migraine is viewed by many as an easy excuse to use when they have a bad hangover and don’t want to go to work. They think it’s something that can be fixed with over-the-counter medication. They think migraine is simply an inconvenience — not a serious chronic health condition.

They couldn’t be more wrong. Those of us who live with migraine know the reality of this painful condition. To those rare few people who truly make an effort to understand our pain, let me say: We appreciate you!

Everyone “knows” the solution

While there are many ways that migraine is misunderstood, I’m going to dive into the aspect that brings me the most frustration and sadness: Everyone thinks they have the “answer” to why I live in pain.

Discussing migraine can be a struggle. Nearly every time it comes up in conversation, someone tells me that they “know” the solution to my pain, even though I didn’t ask them for advice. If someone has tried chiropractic therapy, then they’re sure that chiropractic therapy is my migraine solution. They’re sure of this even if I’ve told them that I’ve tried chiropractic therapy more times than I can count, and it doesn’t help.

Similarly, someone who is on a weight-loss journey may believe that my “ah-ha” solution is changing what I eat — even if they know that I’ve been conscious about every bite that goes into my mouth for years.

Regardless, I try to stay open-minded. In my experience, a brief suggestion of “something that may help” is kind and appreciated. I genuinely want to hear about innovative, interesting approaches. However, when someone tries to force something on me or implies that they “know” how to solve my migraine problem, it diminishes my illness. It feels as if they’re saying:

  • You’re not trying hard enough.
  • If my suggestion didn’t work, you must not have done it properly.
  • I know your body better than you do. You’re missing something obvious.

As those of us with migraine have continuously seen, people often assume that they “know” a clear solution to our pain, even though we have searched endlessly for those answers.

It’s easier to hide

Why did I hide for years? Because, it was easier — significantly easier.

When someone is dismissive of my condition or assumes that they “know” how to cure migraine, I see two options. First, I could stay quiet. That’s what I did for a long time.

The second option is to use that conversation as an opportunity to educate the other person about my complex condition. Today, I often choose the second option: I describe my experiences with particular treatments and I explain how they didn’t work for me. In these instances, I continue to find that the other person will still genuinely believe that the treatment they suggested is the “answer” to my pain. This leaves me more frustrated than before the conversation began. I truly wish I could say this type of incident is rare — but it happens all the time.

Staying quiet — and hiding my migraine life entirely — has proven much easier than dealing with feeling misunderstood and frustrated. Even so, I’m far more open about my experiences with migraine today.

Why step out of the dark?

With time, I’ve come to understand and be certain that I’m not any less of a friend, girlfriend, daughter, or employee because of chronic migraine. It was a long journey to get to this point, but I know now that there’s nothing I could be doing differently in the context of my illness.

Most importantly, I know that I’m not any less of a success — in my eyes, or anyone else’s eyes — due to my chronic migraine. It took me years to cultivate this certainty. If I weren’t so certain, I’m not sure that I could handle people’s responses and judgments of my illness.

Why share now?

I’m fed up with the misconception that a migraine is simply a “headache.” I’ve endured many years of pain, and I’ve yet to see any change in this misconception. I’ve realised that if I’m not championing change and educating others about the reality of my illness, the misconception will never go away. No one else is going to do it for me.

NPS-IE-NP-00044 September 2020