How powerful it is to share your migraine story

Despite writing about migraine for many years (and having the illness for over twenty), I am still astounded by the sheer number of people I know (or know of) who have it.  Yesterday I was talking with a friend and felt a pinching feeling in my left temple—sometimes this is a harbinger of a migraine to come, while other times the sensation disappears on its own.  He saw me rubbing my temple and could tell I had been distracted from our conversation for a moment.
Him: “You okay?”

Me: “Yeah, I just have a weird sensation in my head—sometimes this means a migraine is here, but other times it just goes away. Let’s hope it’s the second case.”

Him: “Do you get auras?”

Me (a little surprised because a lot of people don’t know migraine terminology): “I do, but not with every attack. I’d say maybe half the time?”

Him: “Oh, I didn’t realize you could have some episodes without the aura. That’s fascinating. I only get the aura, never the headache.”

Me: “Wait, you get migraines?”

Him: “Yes, but thankfully never the head pain.”

He then went on to describe the wavy lines he sees in his left eye. I asked if, after his twenty-minute aura, he got tired.  “Yes! I am just exhausted afterward.”

This three-minute conversation reminded me yet again of how many people’s lives are impacted by migraine. If you yourself don’t have the illness, I guarantee you someone you are friends with or related to does (even if he or she has never told you).

The conversation also reminded me of how, in the vast majority of cases, people relish the opportunity to talk openly and safely about their journey with migraine. Just think about it: can you remember the first time you talked with someone in person or online about the truth of living with migraine? How that person trusted your story and didn’t judge?  My hope is that you have someone like that in your everyday life, but many people don’t.  And that’s one of the core reasons we are here in the migraine.com community.

All this is to say what I have said many times over the years in my writing: please take a few minutes to talk with people in your life about your journey with migraine—however and wherever those conversations take place (in real life, on the phone, via email, online). One thing I have noticed again and again and again is how even those people who don’t think they have a lot to say about migraine end up having a lot on their minds.  It can be hard to start the conversation, particularly if someone in your personal life has shut you down or not believed your story. But once you start that conversation in a safe space, you will be amazed at how powerful it is to get some things off your chest.

I started a blog called “The Migraine Girl” over ten years ago because I wanted to talk about my life and my challenges with migraine in an anonymous space. I also didn’t want to worry my friends and loved ones by talking about how rough I was feeling, nor did I want to risk ever having them be bored or disbelieving. I chose the blog format merely because I am a fast typist and thought I could get more words out than if I had a diary. I never really thought anyone would read it—I thought it was just for me.

But here we are, over a decade later, and migraine—for most of us—is no longer a taboo subject in our lives. We are learning to be more open and honest about our chronic health struggles (and victories!), and my blog ended up being a place where I met thousands of fellow migraineurs and have been having some of the most impactful and important conversations of my life.

So go ahead: share your story. If you want to keep your anonymity, I’d encourage you to create a profile on our website using a screen name—you can also comment and talk about things on the migraine.com Facebook page under your real name.  No matter how you choose to participate, we are happy to have you here, and I think you’ll feel a lot better after connecting with us.

Feeling like you have a whole lot you want to share at once? We’d love to read your migraine story—click here to submit.

Want to talk about something specific related to migraine? Check out our forums.

Want to be involved right now? Comment below and we’ll all chat.

Or are you inspired to start a conversation in your real life?  Close your computer or your phone or your tablet and schedule a coffee date with the friend or family member who needs to hear your story.

Thanks, as always, for being such an amazing group of people. I am lucky to have you, and I hope you agree that we are all lucky to have each other.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (2)
  • John Gould
    3 years ago

    I actually feel fairly comfortable telling people about my chronic migraine. I usually have migraine attacks 6-7 days a week, and I have some ability to control them with triptans (but not always by a long shot). I think there are several facts that make it easier for me that it seems it is for some others. First, even people who know me only casually can tell there is something going on with me, since my skin turns light gray, my eyes sort of glaze over, and I start having cognitive problems. When I initially explain that it’s all due to migraine, people are often quite understanding with later attacks. Another reason, I think, that I have a relatively easy time telling people about my migraines is that I never share another disorder I have, bipolar disorder. It is well-controlled with medication and therapy, but I feel like there is a huge stigma attached to mental disorders that is not part of migraine (at least for me). Finally, as I read in another post, most people have family members or friends who have migraines, so it is becoming a known quantity. It is certainly still difficult to have a disorder that causes silent suffering (unlike, for example, a broken arm), and I have definitely come across my share of people who think it’s “just” a headache, but in general, I’ve told most people who might be affected by my migraines, and for the most part, they are extremely understanding.

  • The Migraine Girl moderator author
    3 years ago

    Dear John Gould,

    Thank you so much for your thoughtful reply. I am in the same boat as you when it comes to what you expressed here: “I have definitely come across my share of people who think it’s ‘just’ a headache, but in general, I’ve told most people who might be affected by my migraines, and for the most part, they are extremely understanding.”

    I truly believe that the more honest and open we’re able to be with people about our migraine, the more we’ll encourage others to “come out,” so to speak, and thereby reduce the stigma. Take care; thanks for your comment.

    -Janet G.

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