Which part of your invisible condition of migraine do you wish people would see?


Community Answers
  • chadanddenise
    12 months ago

    The sound and visual sensitivity. I feel like a real jerk shushing everyone when I get home from working with one. Hiding out in the dark hoping my kids aren’t effected by mom begging for quiet or dark.

  • Caitlyn
    1 year ago

    That even on a good day I’m in pain, and a bad day zaps every ounce of energy I have. My home isn’t a mess because I am lazy, it’s a mess because the energy it takes to maintain a home is zapped away by constant pain and postdrome.

  • peacemom
    1 year ago

    I have struggled for 46 years and don’t even try to explain anymore. Thankfully, for the last several years I have an amazing primary care Doctor and for the past 3-4 years an amazing Neurologist. Botox has helped a bit. My employer (part time) very understanding. My husband the best. I just feel segregated!
    I never know what my will happen in my migraine world. I wake with a headache about everyday. But I’m thankful for my migraine free days!

  • amp254
    1 year ago

    I wish people could understand that smells trigger a migraine for me. Smells of their perfume, cologne, dryer sheets, stinky body washes and hand cream, smoke, gasoline, etc. I tell people that smells trigger migraines and nausea and vomiting and head, neck, shoulder and jaw pain and they just say “that’s horrible” and just keep on using products and expect me to just be near them. At this point I am at home and people don’t come in our house because of all the triggers they bring with them.

  • FlyDragonfly
    1 year ago

    I wish people would see the depression and anxiety that comes with this disease. Everyone thinks that if you are over the pain portion of the migraines that you are simply all better….like turning a light switch on/off. It’s not that easy. Those post symptoms can last for days and it really makes it hard to function and communicate effectively.

  • tiggmom1
    1 year ago

    I wish people would realize when I ask for time off or beg off of an event, that it’s legit. The majority of the time I’m able to tough it out, but sometimes I just can’t, and that’s when I ask for time off. I guess I’m my own worst enemy because I’ve been able to manage pain before, but sometimes not. People think “well, all those times you SAID you had a migraine and you managed things before, what makes this time different? Maybe you’re just faking it.”

  • Anne
    1 year ago

    That having migraine is like having a bad flu. But, unlike the flu, I get migraine constantly, so I have to still make my life work. I’m not being dramatic or trying to get out of things – I would much rather feel normal. Migraine saps every ounce of my strength.

  • DozenRabidMongeese
    1 year ago

    The visual auras and the bizarre blind spots. If people could see how much vision I lose with my migraines they’d understand why I can’t drive with one, and can’t work with one, and really shouldn’t walk up and down stairs with one either! I’m blessed to know enough people who are understanding about chronic pain that they believe me when I describe how much a migraine hurts, but they’re baffled when I’m stuck at home on a moderately good day for pain because it’s a bad day for auras and I’ll walk into a light pole and never know what hit me!

  • GardensatNight
    1 year ago

    How bad the light sensitivity is. I always feel like all the people who have been so horrible to me, if they lived in my body for just a week, if they understood how much I hurt, they would get it. They would understand I wasn’t lying just because this degree of sensitivity wasn’t something they had heard of. I have to believe they aren’t evil, just really uneducated. Even my doctors.

  • Joanna Bodner moderator author
    1 year ago

    Hi there GardensatNight,
    Thank you so much for joining in on this conversation. As I am sure you are aware, so many can relate to this frustration! Light sensitivity is such a tremendous challenge. In case you missed it, I thought I would share a video one of our contributor’s shared where she provides some tips to manage this –
    https://migraine.com/video/tools-for-dealing-with-light-sensitivity/.

    Take good care,
    Joanna (Migraine.com Team)

  • Joleen1966
    1 year ago

    I agree k_nelson. I wish there were colors radiating from the pain so people could see the fiery red orange emanating from the left side of my head. You know, like a cartoon? When someone got near the fiery red orange they’d feel a zap and get to experience our pain for a little bit. Just so they could understand. After the little bit is over tell them this is what I constantly feel. So if I seem confused, slow to answer, bitchy, sad, depressed, tired — it would be understood why.

  • peacemom
    1 year ago

    I agree, well said

  • Joanna Bodner moderator author
    1 year ago

    Joleen1966,
    YES…that would be AMAZING and I think truly enlighten SO many!! To make it even better the fiery red orange giving a little zap would help even more for others to understand! Thanks for joining in on this topic. -Joanna (Migraine.com Team)

  • k_nelson
    1 year ago

    How you are always dealing with pain. It never goes away…never.
    People just don’t seem to understand it.

  • Joanna Bodner moderator author
    1 year ago

    It sure is a constant daily struggle managing and dealing with the pain. Thank you for sharing your thoughts and know we understand this battle. Wishing you a gentle day, Joanna (Migraine.com Team)

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