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Yes, I Can with Migraine: Speaking from a Place of Power

Talking about migraine and work is one of those things that stings like a bee. It is difficult to prepare for and its impact lingers on well after it’s happened.

Workplace considerations for those with migraine

I’ve had many, many conversations about migraines and the workplace with folks in the migraine community, as well as with colleagues who don’t live with the disease. There are a lot of considerations for folks who live with migraine when it comes to working, like seeking workplace accommodations, financial adversities, dealing with the stigma and misunderstandings surrounding migraine, dispelling the ‘just a headache’ myth, as well as the considerations around ability and capacity to work at all.

Judgment and lack of understanding

One thing that sticks with me throughout my own experiences and through conversations I’ve had about migraine and work is that it is never easy to navigate. For me, this has been true no matter how many times I’ve had it. It is always difficult to engage from a place of power or confidence, mostly because migraine can be so bothering and debilitating, and partly because there is so much judgment and lack of understanding of migraine patients.

Better than before, but still difficult to deal with

Currently, I work in a position which is fairly flexible—while I do work many hours each week and sometimes have to spend a long period of time looking at a computer or walking around outside in the bright sun, I also am able to have some control over my schedule and can take a few minutes here or there when I need to during the days to take care of myself. This has not been true of others jobs I have worked and for this flexibility I am grateful—but migraine still shows through almost every day of my life.

Over a late lunch with a coworker recently, I casually let it be known in the conversation that I needed to take some medication and get some rest soon because I had a migraine, to which my coworker asked, “How often do you have migraines?”

My heart sank a little bit, and I hesitated to answer. At that moment I remembered that just the previous day, I declined to join my coworkers for dinner after work because I was still experiencing migraine, and after the long work day I really needed the recovery time in bed.

Feeling the need to justify myself and migraine

Oh no. Here we go, I thought. My heart sank a little bit, because this is a conversation I have come to dread when it comes to the workplace. Of course, I usually have a migraine, and I am usually pretty okay with talking about my pain to others, except when it comes to work. So as to not draw unnecessary attention to my discomfort with the question, I answered “I have them pretty often”, then feeling the need to explain myself further, I began to delve into my migraine frequency, but all the things I am able to do despite them.

I felt the need to say “yes, I have migraines but I am more than that”….although now I am sure my coworker wasn’t interrogating me about my abilities, I felt the need to justify myself. In hindsight, I feel silly having done so…it’s not like it’s my fault that I’ve lived with this pain since childhood…yet somehow I feel responsible at times.

Taking power back

Having reflected on that conversation and my own engagement, as well as having spent some time thinking about how I have approached the workplace conversation in the past, I thought I’d list some affirmations for engaging in these conversations from a place of confidence and self-advocacy. So often, talking about migraine in the context of work can be defeating or even explanatory, when it need not be either. Here are some ways I have been thinking about reclaiming power in conversations about migraine and work.

  • Work does not define my self worth or value, and neither does migraine. I am so much more than my ability to produce or work, and so much more than the pain I feel.
  • I don’t have to explain all of the ways I achieve my goals despite migraine—my achievements are worth talking about and celebrating outside of their proximity to the pain I feel. Yes I can! Period. Just as I can do many things with migraine, there are a lot of things I can’t do. I don’t need to justify or make excuses for migraine—it is a debilitating disease that needs more understanding and compassion from others, not more justification from me.
  • Migraine is my business if I want it to be, and I don’t have to feel obligated to explain my pain to others if I am uncomfortable for whatever reason.
  • I am grateful to be able to work at all, and to do work well even though I live with this debilitating disease–not everyone can say the same. I am thankful for the flexibility of my job and compassionate coworkers.
  • If I don’t advocate for myself, it is unlikely that others will. It is okay to be an advocate and to stand up and say ‘I am human, and I experience pain’ even and especially at work.

How have you navigated talking about migraine over time? Have you found it possible to speak from a place of power? What advice would you give to others about migraine and work? Let’s discuss in the comments!

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

  • Holly H.
    9 months ago

    Kyky: I spent 3 additional years trying to work after my migraines got chronic/constant when in my early 60’s. Man, was it hard to be in such pain and have such severe aura, work the very best that I could to put in that full day’s work that I was being paid for, and then hear all the misunderstanding stuff. Living in a senior’s apartment complex, I still hear it often. (My migraine disorder has gotten so bad, though, that I am pretty much housebound, anyway.) It can be a difficult line to walk – the being an advocate for understanding the migraine condition and educating about migraine, and the need to just quit the tiresome explaining over and over to those who will not try to understand or have the grace to quit criticizing what they don’t understand.

    We have the right to be OK either way – it is our decision if, when, where, and to what degree. Our journey is our own; nobody has the right to edit it. When I go down to the main floor just long enough to check my mail, sometimes I want to wear a t-shirt that says: “It’s OK For You Not To Understand The Depth Of My Journey … Just Let Be.”

  • Kyky Knight moderator author
    9 months ago

    Holly H.,

    Thank you so much for sharing your powerful experience and perspective. You hit the nail on the head: “We have the right to be OK either way.” It is so important to remember that we are not our migraines, and that we do not have to bear the responsibility of constantly putting in the hard labor of explaining when others won’t try to understand. I would totally wear that shirt, well put!

  • glassmind
    9 months ago

    Love all your bullits!

    Personally, I had to stop volunteer work and restrict social engagements due to Migraine.

    But the conversations of living with chronic conditions still arise regularly. Within established relationships and new.

    I find power in the very things you said: deciding my level of explaination and self-advocacy.

    Thank you for illuminating how challenging these conversations can be.

  • Kyky Knight moderator author
    9 months ago

    Glassmind,

    Thank you for sharing! There are so many things vying for our attention it seems these days, and at such a rapid rate with fast communication via cell phones and the internet—I know how difficult it can be to strike a good balance with social and volunteer commitments and how hard it can be to say No when we need to because of migraine. I am glad you have been able to find some balance, but so sorry that migraine has made it so that you are unable to do things you once did. Thank you for being a part of the community! Hope you are having a great week!

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