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Living with Migraine

Migraine.com article idea

  • By Lydia Rivers

    I’d like to see an article on perceptions within the Migraine community.

    I am a blogger with chronic migraine who mostly chooses to address humorous and/or positive attitudes I encounter during my wild migraine rides. I was told today that I must not have a real migraine because I can cheerfully speak of triptan injections and the fun I’m going to have with friends and airline travel!

    I wouldn’t mind writing this article myself either, but the article needs help of the community because this response is honestly baffling to me. Sometimes pain is truly depressing, but sometimes it’s also possible to give yourself an injection, throw up, and remain a happy, if sick, camper. I want to see what people think and if there is a tendency to deny the “legitimacy” of other migraineurs within the community itself.

    Would whoever is in charge of the blogs pass on this message? If Migraine.com bloggers aren’t interested in the topic, I’d be happy to write up a more concise synopsis or question to pose to the community if Migraine.com would post it. My most recent example of writing is here: https://migraine.com/stories/im-velociraptor-chronic-migraine-disease-jurassic-park/

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  • By Jenn Lebowitz

    Hi Lydia!

    Thank you so much for sharing such a great idea! We would LOVE to read what you have to say on this topic, and also to share it on our Stories page, as well as possibly with our Facebook community!

    Please feel free to submit your article here: (https://migraine.com/stories/). We look so forward to reading it!

    Thanks so much for being part of our community!

    Best,
    Jenn (Community Manager, Migraine.com)

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  • By Lydia Rivers

    Great! I really need your help to reach people to talk to about this. I’ll hit up Twitter but you guys would have better luck. Here is a post I’d like to see shared explaining my idea and encouraging people to talk about it. Should I post this to stories so it is more shareable?


    Migraines are multi-phase neurological events. Pain “only” makes up about 1/3 of my migraines on average if I keep up on treatments. Chronic migraineurs experience 15 or more of these disabling events a month, and symptoms vary wildly between individuals. I’ve noticed that this leads some migraineurs to invalidate the experiences of other people because their migraine does not match the other person’s migraine.

    Personal example:
    I had a tolerable level five pain but my typical host of other symptoms, such as aphasia, disequilibrium, anorexia, nausea, photosensitivity, fatigue, and slowed cognition were all present. Honestly, I find days like these to be fairly nice. I can even have relax or do household chores if I take precautions to not over exert myself after taking an abortive. Sure the disability warped my sense of “nice,” but a level 8 pain, trying not to cry and puke while balled up in the cool, dark bathtub, is way worse for me.

    I made a comment to another migraineur that I was looking forward to traveling with my level 5 and my sumatriptan injections. I love to travel despite the smorgasbord of triggers I’m exposed to. It makes me a very happy, if sick, camper.

    The other migraineur couldn’t imagine me being a very happy, if sick, camper. She concluded that my migraine was a lie.

    This person, who suffers from the same disability as I, who suffers from the same lack of research as I, who suffers the same marginalization as I, just completely invalidated not only our mutual commonality, but my individual suffering and perseverance.

    And the cherry on top: My actions didn’t fit her idea of suffering and so I must simply not be. How many doctors have done that to how many patients until they find their way to specialists? I was super shocked to find that even within the migraineur community there exists invalidation.

    I’d like to write an article about this. It’ll be specifically for the migraine community but if I have a lot of interest from other peoples with disabilities, then I may make it more broad.

    I want to talk to you. If you want to share your observations or thoughts of invalidation among migraineurs, please message me here.

    If I receive permission from the moderator, I will post my email in the comments as this site can be a tad difficult to navigate while fogged.

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