The Transition from Migraine Self-Stigma to Self-Care
Imagine it’s a Friday evening, late into your college semester. You just got out of your 3 ½ hour Bio lecture, and you’re probably kicking yourself for scheduling your most arduous class to finish off your week. You’re tired from the dull lecture, worn out from the week prior, and maybe even a bit frustrated that you don’t have more time this semester to hang out with friends. That makes the end of your week even more valuable; it’s the only time you get to have fun, doing things you want, and getting to show up socially in the way you feel like presenting yourself.
Maybe you’re on your way back to your dorm, or grabbing a snack from the cafeteria, when you feel a migraine come on. You didn’t notice any of the prodrome symptoms throughout the day; maybe you chalked some of them up to fatigue from back-to-back classes. Either way, it’s too late to get rid of it quickly, and your plans for the night are quickly squashed while you switch to managing the worst of the pain. It’s frustrating to miss out on plans, sure, but losing that sense of belonging cultivated by being part of a social group is what triggers the worst of the FOMO.
Do You Have FOMO: Fear of Missing Out?
FOMO, or “fear of missing out”, is an acronym that became popularized in the early 2000s, stemming from The Harbus, the magazine from Harvard Business School. An extremely relatable phenomenon for folks of any age or background, but one that can strongly influence the decisions of young adults under 30.
This period of life is often characterized by an emphasis on socialization and self-image. Groups of friends from former high schools and now college often grow in number beyond our control. That makes spending meaningful time with each and every one of them an impossible task. In addition, we bring our own struggles with self-image and worth into every interaction, which is layered on top of the challenge of navigating new and stressful social situations. Unfortunately, many of us share this experience, both able-bodied and otherwise.
Self-Worth and a Mindset Shift
It’s only recently that I’ve had a significant shift in my mindset about missing out on things. I’ve always had the desire to spend my time at the beating heart of Western civilization. Sure, I didn’t have enough expendable income to enjoy it to the fullest. Nor the physical health to spend time doing much else outside of work except rotting at my desk, but at least I was near the things that were happening. I think that I had the habit, as many others do, I’m sure, to tie my self-worth into where I was, what I was doing, and who I was hanging out with. And where better to do that but Los Angeles?!
Several years of that ended in a realization we had during a mutual quarter-life crisis my fiance and I were experiencing at the time: Is that really where my value lies? Is it worth neglecting self-care to live a life that contrasts the self-stigma I’ve created around my disabilities? To improve both physically and mentally, it’s essential to abandon the self-imposed stigma and prioritize self-care.
Stigma, Migraine, and a Harsh Reality
Stigma resulting from chronic pain is discussed at length in an article found in the academic journal “Pain and Therapy”, in an article titled, Stigma and Chronic Pain. It’s an informative piece of literature, but one observation sticks out more than the others for me:
“Among chronic pain conditions, migraine stigma has been one of the most durable and remarkably stable over time.”
It’s a harsh reality to face, but it’s reality all the same. What matters now is what we can do to address its impact on us. It’s impossible to control what others say and think, despite our best attempts. No amount of kicking, screaming, or righteous soap-boxing will ever make the different groups of people stigmatizing migraine (and other invisible chronic pain conditions) completely disappear. However, we CAN change the way we internalize it.
How Do You Define Yourself?
Choosing labels we define ourselves with is important, and it’s up to us to choose which ones best represent us. Am I Ben, a person who struggles with migraine, chronic pain, Hashimoto’s, and sleep apnea? Or am I Ben, a person who loves to cook for the people he cares about, enjoys making new cocktails at home, and likes to sleep in on my days off? (sometimes until noon!)
We internalize the things we say about ourselves, whether we mean to or not, and whether we’re joking or not. Positive self-image starts largely with positive self-talk. This is a strategy popular in mental health circles. It’s applicable to avoid the self-stigma that comes along with chronic pain conditions. That doesn’t mean these conditions will stop being a part of who you are, but it enforces that they don’t need to define everything you do.
Moving From Isolation to Connection
Easier said than done, especially for someone who fights off 21+ migraine days a month. Even I felt that I was being a bit unreasonable when I downplayed how life-defining migraine can be. Beyond positive self-image, one of the best ways to combat self-stigma (and stigma in general) is community and communication.
Isolating yourself can only increase the thoughts of negative self-image and anxiety. Being open with others about your condition is important. Share the amount of pain you’re in. Discuss the limitations you may have, and the accommodations you’ll need should a migraine attack arise. I cannot stress enough how important it is to normalize conversations about chronic pain conditions like migraine. Stigma only rises when fewer people are informed.
Finding Peace in the Things You Can’t Change
I can’t tell you not to worry about your migraine; I spend a fair amount of time worrying about mine. What I will tell you is to be patient with yourself and your condition. Finding peace in the things you can’t change is part of growth. It’s unreasonable to think that you can just wish away a chronic condition like migraine. So don’t be hard on yourself. We all hit a wall in our ability to do things due to our 4th migraine day of the week. Do what you can with what you have, and give yourself a little more grace.
Let Us Know…
What is one thing you’ve started telling yourself (or stopped saying) to push back against self-stigma when migraine forces you to miss out? Has that changed your mindset at all? And.. how do you balance FOMO with self-care on tough migraine days? Do you communicate your limits to friends, lean into solo joys, or something else entirely? Share what’s working for you.
Sources
Perugino, F., De Angelis, V., Pompili, M. et al. Stigma and Chronic Pain. Pain Ther 11, 1085–1094 (2022). https://doi.org/10.1007/s40122-022-00418-5