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Language matters! How do you describe your migraine?

The way we discuss and describe migraine can be so personal. For example, some feel very comfortable identifying as a "migraineur" while others prefer more person-first language, like "person with migraine".
What language do you use to describe your experiences with migraine? Are there any terms associated with migraine that you either resonate with or find stigmatizing? All perspectives are welcome here!

  1. I cringe when someone says “Oh you have a headache?”
    I reply “No I am having a migraine attack” I want to be as transparent as possible, there’s so much more to a migraine than head pain. Some people are open to hearing about it & others aren’t so you have to read the room. But I am firm on correcting the fact that I am having a migraine attack, not a headache. Even when I’m dealing with medical professionals.

    1. That poor woman. You have more grace than do I, both people would have received an education.

    2. Interesting you say this - because another dynamic at play that day- that I think is a reality for many of us- was my own depleted energy from having a migraine. There are times that we may not be up for the challenge of raising awareness in others. And ultimately, just because we have migraine does not mean it's our job (in addition to navigating the tricky terrain of the disease every day) to educate others about the condition. We may feel we're not bold enough - or we're too exhausted, or nauseated (as I was that day) to take on this extra task. I try to raise awareness when my energy presents itself and stay quiet when I can't. Still, I was heartbroken that day from not being able to be a better advocate for that woman. Warmly - Holly - team

  2. After years of not going to regular doctors for my migraines because they had nothing to offer me finally hearing about new medication‘s. Went to my PCP to ask her about them and the first thing she said was you just have headaches you should get a massage. It wasn’t until my next doctor asked me why my kidneys were so bad and how much Advil I took That I mentioned that I take hundred of Advil a month because I had migraines and she listened and gave me some medication

    1. Hi
      Having a doctor tell you "you have headaches and need a massage" is the epitome of medical gaslighting. I'm sorry you went through that and I'd like to thank you for sharing this with us. You're not alone - many of us deal with medical gaslighting.

      Migraine is a neurological disease that falls on a spectrum from mild to severely debilitating. Some of us live with episodic migraine while other live with chronic migraine. Are you finding the medication beneficial in reducing attack frequency and severity?

      We hope to hear more from you and I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Team Member

  3. Hi! I advertise I have chronic migraines! Well, sort of. I use Cefaly neuromodulator nearly everyday (it helps decrease my pain!) and this includes when I leave the house.. to go to hospital, grocery shopping or out to eat. Really anywhere and I'm not embarrassed about looking like an alien. It's a way of bringing awareness to Cefaly to let people know about it - migraineuers and non-migraineuers alike. It's changed my life and I wear it out bc it helps me and allows me to get out of the house. I get looks and ppl staring but what I like most about that is that strangers ask me about it! The nurses I see ay the infusion center now know about it and they've told ppl they know with migraine, and they're using it now! My pain doctor didn't know about it so I've educated her. I do this to hopefully help others and to bring Cefaly to the attention of medical personal so they can tell their patients about this tool. My migraine doctor never even told me about it, it was the MA who let me try their sample. And to answer the question of how I identify with migraine in telling others, is "I have migraine" or "I am migraine". Be proud of the strength you have, surviving a life with Migraine. ..and no this is not an advertisement nor am I paid to say this about Cefaly! Lol.

    1. Hi
      Thank you for joining the conversation and sharing your experience with us! I use Cefaly each night as well and find it beneficial.
      I love that you are an empowered, educated patient. It's vital to understand our disease as it will allow us to better manage it.
      I hope you're having a good day and I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Team Member

    2. Thank you so much for taking the time to post, . I admire your tenacity and willingness to educator others about migraine treatments. Which Cefaly version do you have? As far as I know, they've released a couple different models. Would love to hear more about which one has been working for you. - Cody (Team Member)

  4. I know this is crazy but I tell my family what color my migraines are. The colors from best to worst are: blue, green, gray, red and black. They know if it's red or black I'm off to bed.

    1. I'm interested in this too. Let us know if you employ this in your life and how it works for you. Warmly - Holly - team

    2. I've heard this group's music - must've been amazing to see in person! And yes, describing what you are sensing/ seeing sounds- hard to capture- but I think those of us who live with neurological challenges can follow you. Warmly - Holly - team

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