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Disclosing Migraine and an Unexpected Response

The general public is so dismissive of migraine that those of us who have it often never mention it. Why open ourselves up to the hurt of dismissal and invalidation? While I’m generally pretty open about migraine—because I think being honest about migraine is an integral part of reducing its stigma—sometimes I keep my mouth shut. Like when I was researching sofa reupholstery. Although migraine seriously restricts the materials I can use (due to triggers from odors and offgassing), I saw no point it explaining this to the salesperson.

But Rick, the salesperson, was persistent. He asked so many questions that I eventually explained I am sensitive to odors. He asked even more questions, so I eventually told him chronic migraine is the reason why. At worst, I figured he’d laugh me off. That’s when the strange thing happened. Here’s a truncated version of our conversation:

Rick: Beth [his employee] and my sister both have migraine. My sister can’t work because of it.

Me: I’m sorry to hear that. I had to stop working in 2003 because my attacks were so bad. I now write about and am a patient advocate for migraine. If there’s anything I can help with, you can give your sister my email address.

Rick: How many people in the country have migraine? Maybe we could specialize in restoring furniture that won’t offgas.

Me: !!!

Rick has since researched the lowest offgassing wrap for cushions (wool), learned how to source organic latex for cushions, and is working with me to find “safe” fabric to add to their collection. All along the way, he asks why—not in a belligerent way, but so he can understand why all these elements are important to customers who are sensitive to odors or chemicals. He keeps telling me he wants to put me work selling this new line of non-offgassing furniture he’s envisioning starting. While I doubt that will happen, I am getting my furniture reupholstered at a much lower cost than I expected.

Instead of being dismissed, I met a person who is deeply compassionate and has gone way above and beyond to help one customer with a very particular problem. Sometimes people surprise you in the most wonderful ways.

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

  • lisacooper
    3 years ago

    My son tried to resume martial arts classes with a different teacher after he got a chronic headache disorder. I warned the sensei in advance that my son might not be able to handle it. The sensei was very sympathetic and encouraged my son to sit with me in the observation section if he was able to at least watch the lessons. During one break, he tried to distract my son by showing him how to do a magic trick. Sadly, my son’s pain got worse and he had to quit martial arts, but the sensei said if he ever feels up to it, he can come back and we won’t even be charged until my son can regularly attend classes.

  • Migrainiac
    3 years ago

    This positive story moved me immensely. I’ve dealt with Migraine ignorance and flat out Migraine denial for 50+ years. I want to hug this guy. I don’t want special treatment but understanding and compassion mean A LOT! Thank you, sir, and I hope you are successful in your material odor endeavor.
    P.S. Odor sensitivity seems to be one of the most ignored triggers by the general public.

  • DonnaFA moderator
    3 years ago

    Hi Migrainiac, we’re so glad that you found us and that you enjoyed the article. Please know that you’re not alone, adn we’re always here to share support or just to chat. -All Best, Donna (Migraine.com team)

  • nails
    3 years ago

    Joanna,
    Thanks for your response, I’ve been with a headache specialist/neurologist since about 1994. I’ve been through both Dr. Kudrow’s, Raskin, Saper, Cowan and am currently at UCSF Headache Center with
    Dr. Levin. There are no other doctors for me, especially since my only insurance is medi-cal.
    Thanks for your time but just switching doctors isn’t an option for me at this point in time.
    Chrissy

  • Joanna Bodner moderator
    3 years ago

    Hi there again nails,

    I definitely understand that switching doctors is most certainly NOT an option for you! This is so frustrating that despite your best efforts and seeing various specialists that you have hit a dead end and not comfortable with your treatment plan. I am sorry. Living with migraine is challenging enough and to have to search and fight for proper care is so discouraging. Were you by chance able to read the article which included some information on ways to find support? This resource may be useful if you can find a local support group which may then have recommendations for an advocate in your area. Just a thought…here it is again in case you missed it https://migraine.com/blog/top-places-to-find-support/.

    Thanks again for reaching out & especially for being part of our community!
    Take care,
    Joanna (Migraine.com Team)

  • Eleanor R.
    3 years ago

    Chrissy: I want to say that unlike Migraine.com I know all the names you listed; I’ve only been to Raskin and UCSF (Riggins, before Levin came), because I can’t travel, but these are the outstanding migraine specialists at their respective clinics. I do get frustrated when Migraine.com advises seeing a specialist; these ARE the specialists. And I’d love to know what you discover about patient advocates, although the only one I’ve heard about doesn’t sound right for me and requires cash, not insurance, so I assume not medi-cal. All the best to you, and keep me posted. Eleanor

  • Joanna Bodner moderator
    3 years ago

    Hi Eleanor R.,

    Thanks so much for your comment! You are SO right!!! Many of our members do already see board-certified headache/migraine specialists and have unfortunately hit a dead end. We tend to ask if they have seen or considered seeing a specialist only if they may not have specified. It can sometimes be an important point to make….because some may not know what a headache specialist is and/or may not realize the difference with a neurologist who treats so many conditions and may have a hard time being an expert in one area because they are not board-certified in headache medicine.

    Thank you for taking the time to comment and share your opinion on this particular clinic…I am sure this was very beneficial input to provide to the other member being from the same center!

    Thanks for being here!

    Take care,
    Joanna (Migraine.com Team)

  • nails
    3 years ago

    I am very interested in getting in touch with a patient advocate. I am frustrated with my options and with my neurologist pushing me to do a 5 day DHE hospitalization. I feel like they are bullying into it and I don’t like it. How can I contact a patient adovocate? Does it cost money? Any info would be greatly appreciated. Thanks for your time. Chrissy

  • Joanna Bodner moderator
    3 years ago

    Hi there nails,
    Thank you for reaching out. I am so terribly sorry to hear that you are not comfortable with the support and guidance you are receiving from your doctor. It certainly sounds like exploring the possibility of seeing another doctor may be beneficial. Have you by chance seen or considered seeing a true headache/migraine specialist? Here is an article you may find useful “Is It Time for a New Migraine Doctor”.

    Additionally, here is some information on “Places to Find Support”.

    It’s so important to be comfortable with your provider and treatment plan and I truly wish you all the best at being so.

    Warmly,
    Joanna (Migraine.com Team)

  • Lori
    3 years ago

    A lovely, encouraging story.

  • Joanna Bodner moderator
    3 years ago

    Isn’t it though? Such a wonderful and surprising reaction! Happy to hear you enjoyed it. Thanks for sharing. -Joanna (Migraine.com Team)

  • Nancy Harris Bonk moderator
    3 years ago

    Hi Kerrie,

    WOW! Maybe there is hope!!

    Thank you for sharing that.

    Nancy

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