What I’ve Learned By Being Open About Migraine in Public

Choosing to be unapologetically open about my life with migraine has helped me connect with others, prioritize my health, and show up as my whole self.

“Do you feel better now?”

I could hear the hopefulness in my friend Jen’s voice. I had been lying in the dark at our mutual friend’s parents’ house while the rest of the group was outside enjoying the warm summer night — eating delicious food, drinking wine, and listening to music after a long day in the sun.

I was tempted to do what I always used to do and tell her I was fine.

Instead, I explained that while the head pain was mostly gone, the migraine attack wasn’t over.

My body was achy, and I would be spending the night with my heating pad. I was hydrating as we spoke, and I would drink a Gatorade when I got home to help with that. I was feeling drained, so I would probably have something sodium-rich, like instant ramen, and go to sleep as soon as I got home.

I had only been out for a couple of hours. My friends had witnessed a fairly mild migraine attack.

My friends were interested in hearing about the different phases of migraine attacks — prodrome, headache, and postdrome — as well as the various mechanisms I had developed to care for myself.

Unfortunately, that’s not always the case. Up until recently, the few conversations I had about migraine (outside of my immediate family) were so frustrating that I almost never even bothered trying to tell anyone what I was going through.

However, my migraine attacks ramped up in July 2020, and for the last year I have been forced to aggressively prioritize my health like never before. My body shut down on me so completely that I had to become unapologetic about caring for it.

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Sharing helps me feel supported

Before this time, I would quietly take my medications, drink caffeinated soda or eat chocolate (a trigger for some, but not me), and wait until the attack passed or a polite time to leave.

I only left parties to sleep off migraine attacks when they were the very worst, and I was at the homes of close relatives like my parents, brother, and aunt.

Now, I wear ice packs during Zoom grad school, I go camera-off and lie in my bed so I can still participate in calls to organize activism, and I carry a travel migraine rescue kit everywhere I go, as well as a water bottle and weather-dependent essentials like a hat and sunglasses.

Increasingly, when people ask me what I’m doing or about migraine, I try to be honest so I’m not shouldering the whole experience alone.

I never really thought I was hiding migraine, but being unapologetically public about it has changed not only my relationship to my own health, but the way I relate to others around me.

It started with a long post on Facebook and Instagram early last August, accompanied by a self-portrait taken from above while I was lying on my red living room couch with my eyes covered, my blue wavy hair fanning out, the word “blood” from an old Red Sox T-shirt about “Blood, Sweat, and Beards” just visible, an accidental reminder of the visceral nature of my condition.

In the caption, I described the way that migraine had debilitated me to unprecedented levels during the pandemic.

I didn’t shy away from the details: In July 2020, I had 27 headache days, compared to my usual 10 to 12 per month. My previous all-time worst was 20 in a month. I talked about the way migraine impacts my vision, the connection to stress, and the reality that if I took the appropriate amount of time off work, I would have stopped working in June and wouldn’t have returned to work since.

I even mentioned one of the more difficult topics for me — the way that migraine (and possibly other neurological issues like PTSD, my medications, and radiologically isolated syndrome) leave me with neurological deficits, experiencing brain fog where I’m incapable of complex thinking.

The reaction was more overwhelming than I imagined.

I wasn’t expecting quite so many fellow migraineurs to come out of the woodwork, but it turns out that I know more people living with migraine than I realized.

A lot of us are feeling isolated, at a loss for relief, and caught between this condition that ransacks our life and the social invisibility of migraine.

Like me, many people have had more or more intense migraine attacks throughout the pandemic, including some who are having them for the first time ever. I didn’t even realize that one of my cousins also has migraine. Friends I went to middle school and high school with, but haven’t spoken to in a decade or more, reached out to swap advice or simply share solidarity.

I’m better able to connect with others

Seeing me talking about migraine online, visibly caring for myself in person or on Zoom, or prioritizing prevention and verbalizing it for what it is has drawn others living with migraine to me.

We share tips for treating symptoms, compare medications and their side effects, and share life hacks from the world of disability.

Often, I end up having a 20- or even 40-minute symposia on what to put in a travel migraine rescue kit, the importance of staying cool, or all the drug side effects they never mention.

The overall effect is the most important: By living this aspect of my life so openly and unapologetically, it turns any space that I occupy into a disabled space, one where we can support each other, learn from one another, and our needs can take up room.

At a friend’s cookout, I pulled out my migraine rescue kit while sitting and chatting around an inflatable pool. It was one of the first unmasked events I went to outside my immediate family after I was vaccinated.

Since I could feel a headache building at the back of my head, at the base of my spine, I started going through my steps without thinking: ibuprofen, abortive medication, and essential oils on my forehead, temples, behind my ears, and the back of my neck.

I was talking to a fellow migraineur, so of course we started comparing symptoms, medications, and symptom-relief products as I munched on some chocolate and started slathering mentholated gel on my neck and shoulders.

His migraine attacks are relatively recent, so he asked about what I had in my kit and talked about wanting to make one of his own. He was impressed with mine and annoyed at himself that he hadn’t thought of making one before. (I reminded him it took me 18 years’ worth of migraine attacks to figure it out!)

Another friend came over while I was working away on my shoulders with the mentholated gel, and talked about how it might help him and his partner with their respective ailments.

Suddenly, five or six people were all getting real about our various health conditions and how we care for them, texting each other options for symptom management to check out.

Being open helps me prioritize my health

Talking openly about migraine has helped me accept that my condition is chronic — it’s not going away, and it needs to be a priority in my life.

I used to refer to myself as able and able-bodied, but that fiction doesn’t serve me. In being honest with myself and others about what I’m going through, I have learned a lot from other people with chronic conditions, as well as the disabled community at large.

As someone who processes what I’m experiencing by talking with others, sharing has been a way of normalizing it — which has in turn helped me plan for it, so I can take better care of myself.

When we see our conditions as a normal part of routine life, rather than something that should be tended to quietly, or off to the side, it makes it easier to bring our whole selves wherever we go.

Moreover, it makes it easier to care for ourselves whenever and wherever we find ourselves, so that we can enjoy as much of life as possible.

There are certainly times when health conditions require us to miss out. However, having Jen and the rest of my pandemic pod see me wearing ice pack face masks, and see that as normal, has meant that I can often stay part of the group.

It gives me the opportunity to get relief earlier on or for a lower-grade attack, rather than delaying steps that I know will make me feel better because they can be socially awkward.

While some people still say insensitive or unhelpful things, being open about my health needs has made it easier for me to meet them, meet others like me, and to let folks help me when they can.

Article originally appeared on September 30, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on September 28, 2021.