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When it’s not okay to speak up about triggers

Those of you who know me in real life (or who have read my posts here on Migraine.com before) know that I tend to be an assertive, strong advocate for those with chronic illness. Even if it makes me feel a little embarrassed or uncomfortable, I will ask a hotel to provide me with incandescent bulbs instead of CFLs (compact fluorescent light bulbs), which are a trigger for me. If a TV in an otherwise empty waiting room is blasting and flashing, I will turn it off (despite years of being mortified as a kid when my dad would do this!). I run my own business, and I have asked my employees not to wear perfumes, colognes, or strongly-scented deodorants. I have asked to change seats on a plane if I’m next to someone whose perfume is bothersome to me.

In sum, I am not shy about my health needs. Having an illness that is usually impossible for others to see means I have to trust that others will believe me (or that I have to trust that I will be okay even if they think I am making things up). I am kind and polite when I ask for accommodations, but ask for them I do.

Except for sometimes. Sometimes it is either too late to speak up, or it is not my place.

Take, for instance, a wedding I went to this past year. I am an amateur photographer and have been asked to photograph events before, so I was tickled when I was asked to be one of the “official” photographers at the wedding.

After spending many hours doing my job as photographer, I have a newfound respect for my friends who are full-time photographers, especially those that work at very important and fast-paced events like weddings. It is supremely hard work, and I am far from being professional!

It also seems like a profession that’s rife with migraine triggers. One instance in particular had me feeling a little trapped.

You see, I had the honor of being with the bride and the bridesmaids as they prepared for the wedding. We were in a small room full of vanities and mirrors, and I was trying to get photos of the bride without my reflection being bounced back at me. The flash went off and was echoed by all the mirrors—not the best thing for my migraine brain. Then, at one point, a bridesmaid grabbed a bottle of perfume and, in this tiny room full of people, sprayed the bride at least ten times. I did my best to capture the moment without breathing through my nose, and at the first chance I got I went outside for a breather.

I harbor no frustration with anyone in the wedding party, and I firmly believe that the bride and groom (or bride and bride, or groom and groom!) should be able to call the shots at their wedding. Does the bride want to wear a bottle of perfume? By all means, she should! It was not my place to ask that my health issues be accommodated in that situation, and I did my best to deal with any migraine triggers the best I could (in the end, I did a pretty great job, actually).

But this situation led me to wonder what situations you’ve been in where you feel it’s not your right to ask for accommodations due to your illness(es). Have you ever been in a situation where you could have asked to remove a migraine trigger from the environment but decided not to? How do you decide when to ask for accommodations and when not to?

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

  • skinnydebs
    5 years ago

    Hi I also have scent related triggers. All scents perfumes, deodrants, nail varnishes, diesel, anything menthol, cinnamon, chocolate, red wine and when my head is bad cooking smells of food. There are loads more but I can tolerate and even like the smell lemon, some lavenders and most surprising of all bleach. Noise and lights also affect me and I wear sun glasses driving (when I don’t have a migraine) summer and winter. Traveling also bothers me and takes all my energy. One major factor which I have no control over is the weather and pressure. It’s when the weather changes and in Ireland we have what I call indicator weather. One day rain next sunny next stormy so it’s always a battle. Can anybody advise how they try to manage this or what they take. Obviously triptans are out as you would be taking them every few days. I have 100% oxygen which is a huge help and I get botox for migraine. I am reading up on fish oils at the moment but not sure if they would help. I would be very grateful if anyone had any ideas or tell me how they manage. Thank you debbie

  • Willow
    5 years ago

    When I was able to work I had one gentleman who was a bit heavy on his Cologne. He was a really nice guy and I felt very awkward but I simply said “as good as you smell it actually makes me feel sick because of migraines/asthma, could you please not come into my classroom”. He lightly teased me a bit but he didn’t return to my classroom. What I think worked was I told him he smelled good…. But….

  • Jo Petersen
    5 years ago

    I think the only places where I can expect others’ to apply my requests are in my home, my friends’ and families’. If I had my own office, it would be the same. This is a large planet that I can’t control and offending everyone with rules they will not understand in a few sentences is ridiculous. Like you, I have asked to be moved in restaurants, and planes, and have had to move myself at other events. It is my right to stay. Being polite goes a long way until we can teach society about migraine triggers.

  • Jen Cragen
    5 years ago

    I had to quit working because of the migraines. They come so often and unpredictably that my attendance would be shot within a week or two. Also, my job at the time did not have a position which could guarantee a quiet environment which the constant noise at the work location was a trigger. Oh well. That was over 2 years ago. Life is looking up since the SSDI started.

  • Laurie Vincent
    5 years ago

    Strong perfumes cause a Migraine within seconds of smelling it. I manage a women’s clothing store so this happens a lot. If it is an employee I just tell them politely that their perfume is giving me a bad Migraine. They go wash as much of the perfume off as they can and avoid wearing strong perfumes while working with me. All I can do is grab my Peppermint lotion and discreetly apply some underneath my nose and chin to both mask the scent and prevent the Migraine from getting worse. Then I have to take two Aleve and two Tylenol 3’s. If it is a customer that’s wearing strong perfume I can’t say anything at all. I just have to suffer in silence.

  • BethAnn5
    5 years ago

    Scents are a big trigger for me, and I have finally started being vocal about it.
    When I worked in a retail environment it was almost impossible to control as we sold cheap, SUPER stinky perfumes that people sprayed CONSTANTLY…one woman emptied a TOTALLY full bottle “trying it out”…and it was a BIG bottle! My district manager and our regional VP put signs up in my home store, then when I traveled in the stores I was going to asking to NOT spray perfumes, if they were sprayed, then the associates would remove them from the sales floor until after I left.

    HOWEVER, I recently started back to school and was in a small class with lab partners…you guessed it…the only woman about my age plopped down beside me in perfume that made me immediately sick. I had just spoken with my instructor and had given her my medical papers needed for class. I kept trying to scoot out of the air stream of the offender with no luck. When we got to the introductions I was quite vocal in telling the entire class my triggers & asking them to please NOT wear scents.
    When I sat down & we started talking she apologized…yet kept forgetting & kept wearing the scent. Thankfully lab partners were switched often & I didn’t have this problem again until the last 2 weeks of class when she was sat in front of me…
    No win!

  • onehsancare
    5 years ago

    I use the Respro Techno mask, available from AchooAllergy.com: http://www.achooallergy.com/mask-resprotechnomask.asp; it filters most perfumes and other scents and has made it possible for me to fly on airplanes again.

    My family is wonderful and will run interference with guests at holidays and larger gatherings, but my “new” office (almost nine years) is not as responsive as former ones. Three previous offices were very willing to adopt and ENFORCE fragrance-free policies, which made it possible for me to work without fearing my coworkers’ presence, but this (governmental) office is only willing to make half-assed requests that people be sensitive to the adverse impacts fragrances can have on their co-workers. So far the ADA accommodation they’re willing to give me consist of signs designating the area around my office a fragrance-free space. (The bathroom, the coffee room, the copy room, the mailroom are all outside the designated space . . . . )

    Jaylene, you may be legally handicapped. The Americans with Disabilities Act doesn’t contain a list of disabilities, but a general definition: you have a disability if you have a physical impairment that substantially limits one or more major life activities.

  • May 20
    5 years ago

    My church has round florescent lights in the auditorium. I can’t insist that they change all the bulbs to incandescent because they made the change before I was a member there to save money. I had my sunglasses set for bifocals (like my regular glasses) so that I can wear them in church and still read my Bible and the hymnal.

  • Brian in TN
    5 years ago

    I found these cool stick on bifocals and ordered a pair for $9.50. I haven’t tried them yet but will tomorrow, I’ll let you know how they work: http://optx2020.com/p-38-hydrotac-stick-on-bifocal-2-pair-offer.aspx?gclid=CNuW6KqF670CFbFaMgodUQwAEA

  • 50yrsof migraines
    5 years ago

    There is a very simple solution to the problem of perfume! Instead of asking a hundred people in the church (or even 6 in the workplace) to avoid the perfumes, soaps, lotions and shampoos that only bother one person (you)….just wear a face mask! If you get the right one, it will work beautifully…no more migraine! I have suffered from migraines for over 50 years and very seldom have I asked people in public places to accommodate me.

    I recommend a 3M Professional Half-Mask Organic Vapor, N95 Respirator Assembly, available at Amazon.com for under $40 complete with organic vapor cartridges.

    You can carry it with you everywhere, slip it on in church or while working in your cubicle, and filter out all the perfumes. It’s great for traffic smells, smog, industrial smells of all kinds, such as insecticides, paints and petroleum products.

    The most important thing is the fit of the mask. The 3M mask comes in sizes and has a very soft silicone nose bridge. It’s available in most large hardware stores and home improvement stores.

    Yes, you will look funny, but get over it. It’s better than avoiding church or staying at home most of your life to avoid the public and perfumes! Would you avoid using a cane, a seeing eye dog, an oxygen tank or a wheelchair if you needed them?

    I had a migraine yesterday in a hardware store because I did not have a mask with me. There was some kind of rubber tire or strong solvent odor that was overwhelming to me, but didn’t seem to be bothering the cashiers or other customers at all. I couldn’t breathe! It was so horrible, I had to rush outside within minutes, but the pain still seared through my brain like a lightening bolt before I made it to my car!

    You can breathe clean air anywhere you go. You don’t need to drum up the courage to ask everyone around you to change their habits.

  • onehsancare
    5 years ago

    I looked at the mask you suggested. You can’t possibly be suggesting that it is more reasonable for a migraineur to wear a cumbersome mask like that for eight straight hours (can one even speak easily through it? Telephone?) than it is to ask one’s co-workers to refrain from wearing unnecessary neurotoxins and change their brand of shampoo.

  • Heather1dogmom
    5 years ago

    What is sad to me is that I can’t attend church anymore because one of my worst triggers is strong perfumes and colognes. I attend a small church. I have asked the women and men and they have printed a politely worded notice in the weekly bulletin. Two women continue to wear strong scents. One I spoke to and she later proudly told a group of people that “I’m the reason she isn’t coming to church anymore”; the other I was told not to ask to stop wearing perfume because there wasn’t any way I could ask her without hurting her feelings. So it was okay for her to make me puking sick with a migraine, but it wasn’t okay for me to hurt her feelings. I’m sorry I get migraines and I pray every day they go away.
    At work I’ve tried everything and have had to go to work even on my worst days because of no vacation time. No work means no pay, so program a little, go puke, go back to the computer.

  • migrainestl
    5 years ago

    I find myself embarrasssed when people come to my home to visit or fix something as I always have the curtains/blinds closed. I usually try to open them 5 minutes before someone arrives, but recently paid the price and triggered a migraine by not just leaving them shut. I shouldn’t be trying to hide my illness – who cares what anyone else thinks? I’m the one who has to pay the price if I get sick.

    Your post gives me encouragement to speak up and not feel embarassed. Thank you

  • Willow
    5 years ago

    Funny… But it is nice to know others have their homes dark as well. I love the lamp dimmer switch we found at lowes ( now any lamp in any location can be on a dimmer). Splendid.
    Most days I am unable to go outside during the day without an eye mask as well.

  • bluesguy
    5 years ago

    Hey Reama, you are not alone. I too live with all of the blinds shut. At night I use dim lighting, and lamps with dimmer switches on them. They are the kind of tall floor lamps that point upward, so that less bright light gets into my eyes. When people come over, they know that it will be a dimly lit environment. It is okay. We do have to protect our selves from the horrors of photophobia.

  • Reama
    5 years ago

    I’ve asked my stepdaughters and mother in law to please not wear perfume…the request was honored once or twice and then the perfume was resumed. I said something about it and was told it wasn’t perfume, only shampoo (did they rinse it out after washing???)

    It’s awkward. Once, when I saw a family friend (always doused in perfume) coming at me with open arms to give me a hug, took several big steps backward, avoiding the hug (and the transfer of perfume from her to me) but causing hurt feelings. She seemed confused by my apologetic explanation.

    Speaking of hugs, it’s so awful when someone with perfume hugs me, because the perfume is then on MY clothing, MY hair, too, and I can’t just go home and shower/shampoo, and change clothes…it’s with me for the day. This really really angers me. I resort to ducking, running away, etc…not the best solution, either!

    Reama

  • BethBlue
    5 years ago

    I think back to my past and when my headaches first began occurring and creating havoc in my life. I distinctly remember when my mother-in-law explained to me that “Charlie” perfume was available in different “potencies” and that they were identified by color (Silver, Gold, etc.). I remember too that she became angry at my father-in-law one holiday because he bought her the perfume as a gift, but he purchased the weaker strength. It didn’t matter: they ALL made me sick to my stomach, but I couldn’t say a word. (They’re divorced now.)

  • Hope
    5 years ago

    I have asked at work for fluorescent lights around my cubicle to be turned off. Two have, but the other around have not. These lights are all through the building.
    The most awkward is people who wear perfume. I have spoken to management and they know but basically it is my responsibility to ask the person. I have asked but a few people still wear perfume, one is Eternity, another is some strong ” old lady” type spray, and when they come to ask me a question or walk by I get ill. It is very discouraging and has turned a day when I had a lower grade migraine into something exceptionally evil or a day I thought may be a free from pain day into another bout. I think they do not believe and it hurts.

  • Rebecca
    5 years ago

    As a photography student, I can agree that professional photography is, as you call it, a profession that’s rife with migraine triggers. I have a very difficult time working with strobes (flash) for extended periods of time (even working with bright, continuous lights are hard to work with sometimes). The only thing that I’ve asked my professors so far is to just be lenient with me and when I say that I cannot work with strobes on a particular day because I’ve been feeling some warning signs recently, or when I actually do get a migraine and can’t finish my homework on time. I still do whatever I need to stay caught up with assignments, but some days I just have to take a day to myself and not do photography. So far, all of my professors have been very understanding and lenient with me.

  • deanna
    5 years ago

    I’ve been a photographer for years both shooting and lab work and did much better in the dark room! When we switched to computers it made it almost impossible to work through a migraine. The good thing about digital is I close my eyes when it trigger the flash and can check immediately if I need to reshoot or if I got what I need. I don’t think anyone has ever noticed, after all they are blind by the flash!
    I’ve stopped going to functions where a lot of people will be attending unless it’s outside. It’s a sad day when I have to choose between seeing family and friends or protect myself from the impending doom of a migraine. My friends are great about helping me avoid triggers…. family not so much.

  • pooh2you
    5 years ago

    Migraines are actually considered an ADA disability. If you have a reasonable request for accommodation, your employer is required to do it if it is feasible. Such as making the workplace fragrance-free or changing the lighting type if it us reasonably feasible. I worked in an office with mostly woman and 2 women in particular would “bath” in perfume every day. I spoke with HR and the accommodation was made for a fragrance-free workplace.

  • BethBlue
    5 years ago

    I walk a tightrope around my extended family. Sometimes I feel like I should ask for a break (some of them wear fragrances that would choke a horse), and other times I feel as though I should keep my mouth shut. It’s bad enough that I don’t work and am made to feel like a pariah for that; I don’t want to draw even more attention to myself.

  • Jaylene
    5 years ago

    Myself, I have never asked for an accommodation because of migraine. Until I read this post, I never even thought about it. I always thought that I never had any right to ask for an accommodation because it infringed on other people’s rights. I am not legally considered handicapped so, how could I think that I had any rights other than as a normal person? This post certainly has opened my eyes to the possibility of it though. How considerate would others be about it, I wonder? I can’t handle conflict as the stress from that alone would be a trigger. I avoid all and any argument and almost always give in to any conflict. This makes me wonder if I should just try to ask for an accommodation though. However, if I get denied, I would just have to let it go. It would be wonderful if they did. If it worked positively, I might even attempt to go out into the world more often.

  • Cindy Schroeder
    5 years ago

    I hired a woman part time to help me out at the office. She started wearing perfume. I asked her not to and explained why. She wore it again and I told her she would be in the bathroom scrubbing if she did it again. She did and I told her to go wash it off. It still didn’t sink in. The next time she came in with it on, I told her that her help a was no longer needed and she had to pack her things and go home. I worked in an environment that triggered migraines quite often as it was and I wasn’t going to work in a tiny, cramped office with someone who was so insensitive to my request. That’s the only time I have done anything to accommodate my migraines.

  • Laurie Vincent
    5 years ago

    Good for you Cindy for sending her home. I have had to ask employees to please wash off their perfume and to avoid wearing strong perfumes on days that I work. Luckily no one had a problem with my asking them. When customers come in the store I can’t say anything at all if they are wearing a strong perfume. I just have to suffer in silence, use peppermint lotion under my nose and chin plus take medicine for the bad Migraine.

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