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Stigmatizing behavior: Avoiding triggers.

Stigmatizing pain behaviors: Trigger avoidance

I promised everyone some more specifics on “pain behaviors”, so here’s one example. Some types of “pain behavior” contribute to stigma even though they are healthy. Migraine may be considered an invisible illness, but certain behaviors are a dead giveaway.  One of the ways we become more visible is by trigger avoidance. No matter how discreet we try to be, trigger avoidance sets us apart and draws attention to migraine disease. Once others know that we have migraines, their false beliefs about migraine get projected on to us.

I frequently get concerned that people will misinterpret my behaviors as rude or demanding, so I try to explain that I do these things because of migraine. Because of their preconceived ideas about migraine, my explanation often makes things worse. In doing all the right things to stay healthy, I can make myself a target for stigma.  It is especially strong in certain situations.

At the pharmacy

Standing in line at the pharmacy is the worst.  The last time was especially bad because I had to pick up medicines for everyone in the family. I was surrounded by a dozen people old enough to be my grandparents all waiting on me to finish. To make matters worse, there was a delay with one of the prescriptions.

In these situations I know that any display of strong emotion can get me labeled a “drug seeker” so I try to be especially polite and patient. After a long delay, the pharmacist finally hands me 10 bottles, each in a separately stapled bag. I was convinced everyone was thinking, “What’s she doing with all those drugs?”

The bill was over $200 even with insurance and discount coupons. The pharmacist asks, “Did you know it was going to be this much?”

“I’m surprised it’s not more,” I chuckle defensively, avoiding eye contact as I swipe my card to pay the bill.  Walking away with a huge bag of medications I worried that people might think I was a drug-seeker even though none of the medicines were addictive painkillers.

Wearing sunglasses indoors

We have stockpiled incandescent light bulbs, so I rarely worry about light as a trigger in my own home. However, the rest of the world is just waiting to blind me into a migraine with flickering florescent bulbs and flashing neon lights. The only thing standing between me and the next attack are a pair of cheap sunglasses.

I don’t ever see anyone else wearing their sunglasses indoors, so I must really stand out. I was raised to have manners. That meant removing hats and sunglasses inside. I was also expected to make eye contact when speaking to someone. That’s pretty hard to do when you are hiding behind big, dark shades. If I was raised with these expectations then a lot of other people were, too. Do they think I am being rude? For the sake of polite manners, do I owe them an explanation?

Declining offers of food or drink

I really hate it when I am offered food or drink that are triggers. Social convention dictates that I must accept the offer, yet I can’t. It was so much easier when I accepted the offer and ate the food anyway. I would quietly accept the consequences in isolation and the host would never know. To do that now is just being a martyr for nothing. This is one of those times I really have the urge to step into educator mode and share everything there is to know about migraine triggers. Most of the time I can resist and just say, “Doctor’s orders,” or “I’m allergic.” Claiming “allergy” or blaming the doctor are socially acceptable excuses for declining an offer of food or drink.  Anything else is considered rude.

Asking for accommodation

Everyone is having a great time and then it hits me. The lights are too bright. The noise is too loud. That incense is killing me.  Even in my own home, I feel a sense of shame when asking my family to quiet down, turn down the volume or turn off some lights. I do it anyway, but not without being convinced that everyone thinks I’m spoiling their fun. I’m an introvert, so I’m not exactly the life of the party anyway. But when migraine symptoms hit, it feels like I’m asking too much of others. I get these random thoughts that I should be able to protect myself from triggers without asking anyone else to change or appear different in any way.

You would never know this by looking at me.

If you were with me in any of these situations, you would never realize how I truly felt. I can assert my need for accommodations with diplomacy and grace. To anyone else it appears as though I am confident, self-assured, and relaxed. No one would ever guess that my heart pounds just a little harder, my throat feels a little tighter, and for a microsecond I seriously consider biting my tongue.

It was easier when I thought the attacks were random and uncontrollable. I could be viewed as the innocent, yet courageous, victim of unfortunate circumstances. It is much harder to take the necessary steps to avoid known triggers. Trigger-avoidance behaviors make migraine more visible by drawing attention to the many strange things we must avoid. Healthy trigger avoidance behaviors can make us look like “spoil sports” who ruin everyone else’s fun.

Your turn!

What do you think? Are there certain situations in which you feel stigmatized or embarrassed by migraine? How do you cope?

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

  • Ujima Moore
    4 years ago

    I always feel so empowered reading your articles because while I have surrounded myself with supportive people for the most part I am still odd-woman out when it comes to avoiding and managing my illness. I possess a collection of cheap dark eyewear that I sport even on an overcast day and of course I wear them indoors. I am known as “finicky” because I avoid and decline certain foods while everyone else is chowing down around me. The great thing that comes with age is the fact that I don’t care or feel the need to apologize any longer. If the situation calls for it I will provide an explanation but on the whole I just continue what I need/have to do to stay well and functioning. If people label me as finicky, affected or eccentric… oh well! I would not expect someone with pollen allergies to dance through a springtime garden on a windy day then get angry when they decline.

  • LAnnSmith
    5 years ago

    We often talk about having an invisible illness and nobody understands, but here now we are discussing being visible and kind of embarrassed by it. Maybe we should accept these obvious signs of our Migraine Disease, and not scurry away, but just go on about our lives. This is our truth. We are ill and need to live differently, and so what?

    -Stinky perfumes make me blind/nauseous sick with migraine, so why shouldn’t I exit an elevator immediately? I don’t need to be rude or anxious about it, just push the button and leave when I recognize my situation.
    -Wearing sunglasses indoors is necessary and so minor, I really don’t think anybody notices or cares.
    -Food and drink, gracefully accept or decline with or without explanation.
    -Picking up a lot of Rx at the pharmacy. Any time I’ve seen that I’ve only thought the person/family must have some terrible illness, what a shame.

    If people will think poorly of me for migraine, will these actions make that worse? Other than bosses, who can punish me for them? I’ll still feel better, right? Am I being naive or stupid for thinking this way?

  • onehsancare
    5 years ago

    Wearing an ugly mask whenever I’m in public, and having to explain why to people. I view that as public service–the more often I can say, “Other people’s perfume and cologne give me migraines,” the more likely to influence others not to wear perfume or cologne I am. (Hey, I can dream!)

    But I hate walking into someone’s house and backing out–can’t go in there–there’s a candle, or air freshener, or cleaning solution, or something smelly. They try to problem solve, and even if we can identify the immediate cause, it doesn’t solve the immediate problem–the scent is still there, and will probably be there for hours. And none of that helps with how I believe I am being perceived–as a hypochondriacal controlling micromanaging bitch.

  • Holly H.
    5 years ago

    After years of constant migraine, I’m somewhere in between. I still try a bit of explanation in specific situations, mostly where I have to turn down an invitation from a cordial host who doesn’t understand why I don’t “at least give it a try.” On the other hand, when a concerned person who does not understand the magnitude and length of my struggle, wants to problem solve and cannot drop the subject, I finally have to say that they has been going on for years and there is not anything they might suggest that I probably have not tried if I could afford to do so.

    If I seem to be doing decently well when they see me, it’s because I work to control my environment and food choices; but then at the same time they’ll make a comment about hardly ever seeing me. (That’s because I just for the second time spent 4 days down and out from just doing a couple loads of laundry in the apartment laundry room; I can’t begin to afford to send it out.)

    BTW, this is where migraine.com is so appreciated – in that sense of community of shared experience of such a debilitating condition and its many layers of challenges, and in communicating ideas/ways/means to help us try to cope and just do the best we can with the way we are feeling at this moment-in-time.

  • Georgiana
    5 years ago

    Today I start my search for a gas mask along with a case to carry it in. When I find it, I will carry it on me at all times when I leave home. When someone’s sucking on a cigarette, which, of course, they’re most likely not supposed to be, in some public area when I’m trying to just enter a damn grocery store or do something else that people regularly do in everyday life, I can wear my gas mask.

    Do you think I give a fat rat’s arse what the smoker’s think? Or anyone else for that matter? You got another thing coming.

    I’m DONE with this crap. You have a right to put carcinogens into the air? I have the right to wear a gas mask. Bite me.

  • LydiaE
    5 years ago

    I was having approximately 18 migraines a month. Menopause was not the cure all I had hoped it would be either. I also have fibromyalgia so need a few pain pills to keep moving rather than sitting around. Plus at 56 I am presently raising my 2 1/2 yr. old grandson. 3 years ago started Botox and it has helped my migraines tremendously and cut down on my imitrex use. I used to worry I was going to have a heart attack from using so much of that stuff. On those bad 10 pain days I didn’t care though and I was too sick to sit in an ER for 6 hours. You all know I imagine. Figured I’d just die at home laying on my left side on the couch.
    On to the food…. Can’t eat this. Can’t eat that. It drives my husband more crazy than it does me I think. I also feel rude when I have to say no but really we should just politely say no and make no excuses. Pretend I’m vegetariarian or something. Or it’s against my religion. Lol. Probably my generation of plate cleaners and guilt complexes. I try to eat gluten free to help w/ fibromyalgia pain but there are already so many migraine dietary restrictions, I gave up drinking and smoking long ago, I find I give in to the gluten the most. I feel like my diet is so bland and I’m afraid to eat half the time.
    Years ago I had a female doctor stop giving me my pain meds for my migraines. She must have thought I was drug seeking. It was cruel what she did. This was before imitrex. I went back to my former GP and he put me on a new one which I’ve been on for about 20 years now. That was awful treatment and an awful feeling and undeserved. It is a frightening way to live for migraineurs. I go to a neurologist now as well.
    I have no problem wearing sunglasses indoors if need be. Except I can’t see well. I always feel sexier in my sunglasses! I got prescription sunglasses and call them my migraine glasses!
    I do feel this business of getting rid of incandescents is thoughtless and stupid. We live in an old house. They don’t last in lamps any longer for some reason. I miss the pink soft light bulbs. I deliberately used to work 2nd shift in a restaurant in my younger days( pre – imitrex and Botox ) to avoid all that office fluorescent lighting and to give me time to get my a.m. Migraines under control enough to get to work. Migraines literally held me back professionally, personally, and I had hoped menopause would cure them and they got worse!
    I think I hate the most when I say I have a headache and family ( one person in particular) wants to know why? Then she wants to problem solve it w/ me. This is at family gatherings. Argh. I tend to have them on those days. I think it’s because of the extra work and stress leading up to holidays and the resultant letdown. Last Xmas I had to stay home which was a first but frankly my head hurt so bad I didn’t mind being home alone. I also missed a big parade w/ my grandchildren 2 summers ago which I felt very bad about. I’m finding as I age heat is a real problem. I live in Maine and love the cold wintry air on my head especially when having a headache.
    Thanks for listening.

  • LydiaE
    5 years ago

    Oh yeah also my husband has yet to learn how to be quiet when I say I have a really bad headache. He’s a noisy guy anyway. On occasion I get noisy right back and then retreat to a quieter place. I wish just once he could experience this so he’d get it. But otherwise he’s very understanding.

  • Luna
    5 years ago

    This is my reaction to your article. I am not addressing any work situation.

    “I was convinced everyone was thinking,” …. Does what you do or get at the pharmacy really matter to strangers? You were “polite and patient”. Why would anyone think badly of you?

    “For the sake of polite manners” ….. I was probably a little self-conscious wearing sunglasses all the time at first BUT not for long. My health/comfort is more important.

    “Social convention dictates” … Are you really tied to this?

    “but not without being convinced that everyone thinks I’m spoiling their fun” … Take care of yourself. If you don’t have to be there leave. If getting out of the environment for a little helps, do it. My friends and family all understand and are happy if I can only join them for a little while. They expect me to take care of myself and not suffer needlessly. If in my home, my rules.

    I am an introvert but have changed my way of thinking about life because paying later unnecessarily just isn’t an option. I’m too old for that. Besides just look around you. There are a lot of weird people in society so I am just one more. LOL

  • Sara
    5 years ago

    Hi Tammy.

    Where to start? I have all of the same problems. There are always going to be people who discriminate and don’t believe us. One of my bosses sees what I go through daily (used to be a friend), but still discriminates against me and another disabled co-worker. People are people, some are understanding, some are not. You could explain your sunglasses, your non-narcotics (btw, some would still judge you, even if they knew your drugs were non-carcotics), your diet, your need for help, and some wouldn’t care, some would be helpful, and some (other migraineurs) would totally get it. It’s one of the many problems we deal with. I just try to hold my head high, stay calm (except at the end of a seven hour ER visit) and just be. People will judge each other no matter what. Be happy you are a part of the sensitive few who commiserate with others!

  • melindarose
    5 years ago

    FALLING ASLEEP IN PUBLIC PLACES
    With many of my migraines I struggle with falling asleep. It can happen at any phase of the migraine. Recently it has happened while sitting in church. I am embarrassed, other than my own family the only one aware of it is my pastor. I also have fibromyalgia and ruptured discs in my neck and low back. I could and should explain yo him what is going on. I guess it is a case of pride. I feel lije with all these diagnoses people will think I am a hypochondriac. Why? Because I have had negative remarks so I tend to keep to myself.
    I have a very small window where I can sometimes get up and walk as though I am heading to the bathroom or the drinking fountain. Sometimes I don’t have time.

  • msruff
    5 years ago

    Been there, done that. I often wear sunglasses indoors – sometimes I explain myself, and sometimes I don’t. People rarely ask me about it, so it’s a case of “don’t ask, don’t tell.” I always have my mother turn off the radio in the car, if she’s taking me anywhere; she knows, though, that it’s particularly grating on me. And in this season of bell-ringers, I feel bad, in a way, of clasping my hands tightly over my ears when I pass, but, you know, who cares? I don’t want a migraine, and it’s really none of their business.

    The worst situation I had, though, or at least the one that made me the angriest, was at a pharmacy. I had two prescriptions for painkillers that help me get through the day. The pharmacist had the gall to ask me, “Do you really need all of this medication?” What’s it any of his business? If the doctor prescribed it for me, then, yes, I need it. I am not a drug seeker. I only get the medication I need and can tolerate. I was tempted to report him to the management, but I didn’t want a big scene. Most of the time, though, all I have to say is “migraine,” and people say, “Oh, okay,” and that’s it.

  • Marian
    5 years ago

    I relate the pharmacy situation and the stigma of “drug seeker”. I am always anxious about running out of vasoconstrictors. A pharmacists was apologetic about the cost with me too but I responded with an explanation that it was less costly than an emergency room visit. Sunglasses indoors too when there are flickering fluorescent lights! I cannot be around anyone crunching ice. That’s the worst sound trigger for me.

  • Sandy
    5 years ago

    oh my. this is for me. I This is the part of the disease I have been struggling with. Feeling the shame of asking my family to turn the lights down, noise down. Feeling like my life is boring because I have to go to bed same time and get up same time every day. And feeling like a freak or being rude if I wear sunglasses or ear plugs indoors. Finding a hat to protect me from the sun but not one that is too tight. not really concerned about style at this point. going out in public without a bath or with dirty hair because i have a dr’s appt. it is because of this issue that i am struggling with the idea about being able to return to work. like you said Tammy, the world doesn’t stop or change for us. becoming comfortable with myself and accepting limits of my illness

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