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Migraine pet peeve

The stigmatizing statement most likely to get a reaction out of me is the one I hear at every family gathering. It comes from a place of caring and is seriously misguided.

“Have they found out what’s causing those headaches yet?”

Hearing this question makes me want to scream. I don’t do it, of course. Most people genuinely mean well. They don’t understand how stigmatizing this statement really is. Asking if the doctors have found a cause assumes that one can be found. It also equates triggers with cause.  Many people still believe that by avoiding stress, certain foods, smells, or other stimuli, all migraineurs can “cure” themselves. This question implies that either I am working with incompetent doctors or I’m not motivated enough to find a solution. Either way, it assumes I am to blame.

Also, I view myself as type of ambassador for migraineurs. When people who know what I do ask this question, it is sometimes delivered with an unspoken accusation that I am a failure at my job because I still struggle with chronic migraine. Like many, part of my identity is wrapped up in the work I do so these types of comments hit me hard at my core.


For so long I would stumble on this question. I tried hard not to sound defensive even though I felt as though the legitimacy of my illness and my work were being judged by my response. I would carefully give a long explanation, struggling to find just the right words.  Finally I realized that the question is either sincere or it’s not. Either way, my response doesn’t change someone’s preconceived ideas about migraine. So over time I’ve learned to have some quick responses ready.

When I am feeling generous and I think the person really cares to know how I am doing, I respond truthfully.

  • “I’m doing great today.”
  • “Well, I don’t wake up with them anymore.  That’s progress.”
  • “According to the latest reports, a new treatment is coming soon.”
  • “I’m starting Botox in a few weeks. Hopefully that will make a difference.”
  • “My doctor and I are working on a plan. It’s too soon to tell if we will be successful.”
  • “There’s a new type of drug in research trials. I can’t wait to try it as soon as it’s available.”
  • “My doctor keeps tabs on the latest research.  As soon as there’s a cure, he will let me know.”

Sometimes the person asking doesn’t really want to know the truth. And sometimes it doesn’t matter what their motive because I am feeling snarky.

  • “Yep, I have a messed up brain. That’s the cause.”
  • “Two concussions certainly didn’t help the situation.”
  • “Gosh, why don’t you ask the ER staff? I’m on their frequent flyer program.”
  • “Sure, I’m drug-deficient.”
  • “I think I’m about ready to try drilling a hole in my head.”
  • “Oh, I’m not sure I want a cure. I kind of like being a guinea pig.”
  • “They better hurry up. I only have one good vein left to put the drugs in.”

Understanding friends accept my honesty or sarcasm. To the rest it doesn’t matter what I say. They’ve already decided I’m either crazy or lying. They will use whatever I say to support their own assumptions. I worry more about people misunderstanding the purpose of my attempts at trigger avoidance and get hung up over-explaining myself so I don’t appear rude.

Do you have a pet peeve?

How do you respond?

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

  • DJStolle
    3 years ago

    My pet peeve is when all I am asked about is “How are your migraines?” I am more than a Migraine. I am a person with a life I am trying to survive in. Please ask me “How are you today?” If it is good, I will tell you that. If it is bad, I don’t snark at them, but tell them it could be better.

    OR “Do you still have Headaches?” I tell people, I still have them, but my attitude towards them has changed. I have accepted that they are a part of my life.

  • MicheleLynn
    4 years ago

    I rarely even talk about it with people anymore. I got sick of their suggestions.

  • Crystalrz4
    4 years ago

    Maybe it’s just me, but do you ever wish when you are in the throws of a severe migraine and a Doc, Pharmacist, Nurse or another person, who just keeps blathering on about you just having to be stronger about your HEADACHES, at that point, that you could just reach over and put your hand on their arm for just a FEW seconds, and transfer that PAIN to them so they can see/understand what you are going through and what you have to live with?!
    I’m not trying to be vicious, however the people who chastise me the most, if they could FULLY understand what I live with 24/7, for just a FEW seconds of their life, perhaps they would have a better understanding of my pain.

  • Crystalrz4
    4 years ago

    My answer to those whom I’d just assume avoid, when they ask that question or that type of question is, “I don’t think they know how to “Cure” Genetics YET!
    To those whom I DO care about, they generally ask, “How are you doing today?” Because with me, it is day by day, or hour by hour, and sometimes it’s minute by minute.
    What REALLY upsets me are the Doctors, Pharmacists, nurses etc. who call me a Drug Addict. REALLY?! I have many fairly debilitating health conditions which I deal with as well as migraines. Due to the nature of some of these, I CAN NOT use ANY Migraine Preventatives, only Rescues. OF the Rescues, I’m on 2, Stadol Nasal Spray (class 4) and Percocet 5/325mg (class 2). They don’t mind that I’m on Percocet, it’s the Stadol that they give me so much grief for.
    I have both Chronic Daily (24/7 since Jan 1, 1986) Migraines and Hemiplegic Migraines, migraine induced Epilepsy, and Prinzmetal Angina, 3 possibly migraine induced strokes, 4 T.I.A.’s . I’m in Chronic Pain and there is VERY LITTLE help for me. I can’t take ANY triptans, or botox, or any drugs that are similar. I’m 63yrs, and have been fighting migraines since I was 4yrs. I was medically retired in 1990 and on Full Disability since 1992 due to my migraines. Many times during severe migraines, I’ve gone temporarily blind, deaf, stopped breathing and seized. This has been witnessed by my now retired Neurologist, and G.P., plus E.R. Staff, friends and family throughout the years, both documented and in my medical files and yet my current G.P. wants me to try and get off my two pain medicines because it is “Rebound” causing ALL my migraines, (what a shame I wasn’t on anything when I was four years old and wasn’t on anything!!!).

  • Roxane
    4 years ago

    There is only one known “cure” — a silver bullet. Unfortunately, that is also the cure for LIFE itself. Bon courage!

  • Crystalrz4
    4 years ago

    Or a werewolf! ; – }

  • Anne
    4 years ago

    I get this, too, as a chronic migraine sufferer. I always say “there’s currently no cure for migraine, but the latest theories are…” Then I talk about what I’ve researched – like the cortex of migraine sufferers may be shaped differently or the sheath around the nerves may be not as well developed. Someone without migraines will never understand. I also always say, “a migraine is not a headache – a headache is one of the symptoms, but there’s a lot more involved…” I’ve actually had to tell this to several doctors – I’ve said that if a headache was the only problem, I’d be fine. But we, who suffer from migraine, know that there’s so much more involved than just a headache.

  • Crystalrz4
    4 years ago

    Excellent!

  • Dee
    4 years ago

    I no longer respond. I just become absent. Migraine has made me careful about where and who i expend my energy on.

  • Luna
    4 years ago

    I agree with Shani about Hope. Just went through a few days of pukey with depression and almost despair. But during that time decided to get back to seeing if there is a dietary trigger I just haven’t been vigilant enough to find. Don’t ever give up.

  • Shani
    4 years ago

    I have a couple of very well meaning people that ask and I know they say it out of true concern. AND THEN>>>there are those I wish to smack up the side of their head out of frustration b/c you can hear the implications in their voice(not just the delusions in mine haha). The best though was when I went to my Dr for the umpteeth time as he will be my key to getting to a Headache Center and he states well it could be there are no answers. You can go there and they can tell you the same thing. Ok fair enough;BUT does that mean you stop trying? Stop seeking what may work for you? No. Because even on my horrible days I cling to hope that something may work. So I keep going doing and hearing(not listening) to what I need to in order to reach my next goal, what else is there to get you thru if you don’t have hope?

  • Luna
    4 years ago

    “Have they found out what’s causing those headaches yet?”
    Yes. It’s a neurological brain disorder that they don’t know how to fix.

  • Gypsynurse
    4 years ago

    I woke up Thursday morning to hell. Complete with nausea, vomiting, crying and already to far gone for abortives to actually impact my migraine. My husband rolled over and started asking me what I did the day before or didn’t do or what did I eat or did I take anything and basically what in the hell did you do to wake up and ruin our day? Guilt, anger, defensiveness and even that dreaded I’m done hit me all at once and I have to remember I didn’t DO anything and I will DO everything to stop this and carry on. It is HARD to understand where people, especially those that are supposed to love us, are coming from when the accusations fly. I will continue and pray and be the guinea pig and hope, oh that sweet hope. Thanks for putting this out there. I understand.

  • Leynal
    4 years ago

    Tammy & Gypsynurse –
    Sometimes you read someone’s story and the words could be your own. Thank you both (and everyone else too) for putting your stories out there. Reading it tonight hit home to me and made this chronic migraineur a little less isolated after endless days in bed. Xo

  • Lisa Robin Benson moderator
    4 years ago

    Tammy, so true! I hate this question, too! I try to answer with a simple metaphor, like “migraines are a river and they build on each other and if they overflow you’re drowning.” But sometimes it’s talking to deaf ears. Love your snarky comment examples, especially he guinea pig one. I’m way too shy to say that sort of thing usually but it made me laugh. I have used a snarky comment about inquiries into why I’m wearing sunglasses indoors, though, like “because my future is so bright,” or “I’m escaping the paparazzi.” You don’t ask someone why they’re using a cane, why ask them why they have on sunglasses….
    -Lisa

  • TGG1804
    4 years ago

    I read about red lens possibly helping with migraine, I asked my doc & optometrist who both said you dont know your triggers it pobably wont help, well I thought you dont know that, I dont know that, so I got a pair of oakley sunglasses with their G30 IRIDIUM lens, now I dont go anywhere without these glasses, I have worn them inside, gotten comments and explained the reasons why I am wearing them, I cant explain how restful they make my eyes, a lot of my triggers are audio/visual, at the minute I am not working so noise is something I can control as is the light levels in our living room. I’m due to go back to the docs and ask once again about botox. But all last week I woke up every morning with migraines, couple of days the sumatriptan worked, but the others it didnt. I’ve lived with migraines for 30 years, loads of people think oh its just a headache, yes of course it is because if it was I wouldnt be sitting here holding back the tears from the pain, oh if only they could feel what I feel. I take it a day or if its bad a minute at a time, cant do any better than that.

  • BethBlue
    4 years ago

    Once again, you are spot on. I’m tired of the skeptics and the haters. We have to try to remember that we are the guardians of our health, and to keep the “noise” away from our progress. Keep up the good work!

  • Sandy
    4 years ago

    thank you. i have the same problem. “as if i am not trying hard enough, sure, I can avoid the sun, trains, any light, sound,etc.” Yes, I too have the frequent flyer pass to my dr’s office, urgent care, and worse…. a little less frequent er.

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