It’s impossible to count all of the times I’ve hidden my migraine from others. I’ve been living with chronic migraine for over a decade, so much of my life has been a game of hiding my illness from those around me.
There are a lot of reasons people living with migraine might hide. We’re afraid those around us won’t understand (and often times, they don’t), or we don’t want to be seen as a “sick person.” A lot of times, we hide the pain because we don’t want to miss out on life.
My ability to live in hiding is both a blessing and a curse. On the one hand, I’m fortunate that I can go through life without anyone ever knowing of my constant pain. On the other hand, I am so good at hiding my pain that people often have a hard time believing I’m ill.
In this piece, I will tell you about three times I tried to hide my migraine from those around me. On the outside, I probably seemed fine. Internally, however, I was dealing with unbearable pain because of a migraine attack.
In a quaint European city
Nothing makes me happier than travelling and experiencing new cultures. Unfortunately, the travel bug doesn’t go hand in hand with constant pain. For a few years, I neglected to take any big trips due to the limitations of my illness. That said, I recently took a major leap and planned a trip to Europe with a close friend.
The trip started in Copenhagen. I made sure to stay hydrated during the first leg. We spent most of our time wandering around or sitting in cafes. We talked, read, drank herbal tea, and enjoyed the light of scentless candlesticks. Maintaining a sense of calm helped keep my migraine pain at bay.
Our second destination was Prague. At this point, my migraine was still mild, but the lack of sleep and constant travelling were starting to catch up with me. Regardless, I felt lucky that my pain didn’t reach an extreme at any point.
By the time we got to Amsterdam, our final destination, I was in shock; I had made it nearly the whole trip without having to check out due to a migraine attack. I never experience that kind of luck.
Toward the end of the second to last day of the trip, I could feel the pain creeping up. It felt like a storm was about to come, and every bit of that shifting barometric pressure nagged at my brain as we wandered the streets of Jordaan.
Then it hit, hard. The events of that day are still a blur to me, despite there being photographic evidence of how normal I looked while the migraine took hold of me.
My assumption, based on many similar migraine experiences, was that I didn’t want to put a stop to our day due to my pain. It was also my friend’s vacation, and she invested time and money into it. I likely didn’t want my migraine to inhibit her experience of the city.
After the migraine attack, I couldn’t recall how I got back to our hotel. I wasn’t sure if I came back on my own or if my friend accompanied me. I didn’t know if she stayed in the room with me or ventured back into the streets of Jordaan. My sunglasses and room keys were also missing.
The moments that I can recall involve drinking coffee out of the white mugs that sat on the nightstand. I also remembered that my friend massaged my head while lying in the bed of our room that overlooked a canal.
While it made me sad that both of us lost an afternoon and evening of our trip due to my pain, I genuinely felt lucky. I had the opportunity to explore Europe with a wonderful friend who made me feel completely relaxed and at ease. I recognize how rare and special that is.
During a bachelorette weekend in the desert
My best friend was getting married and decided to have her bachelorette party in Scottsdale, Arizona. I anticipated that my flight from New York to Arizona would be hard, and it was. My head pain had been agitated by the general airport stress and started to worsen with the in-flight pressure. I did my best to hydrate before, during, and after the flight, but it didn’t offer too much help.
Despite my pain, I was thrilled to see my friends and have our high school “crew” in the same place at the same time again. I wanted to take full advantage. Fortunately, the group was tame. I didn’t anticipate any heavy drinking or partying, and that made it easier.
My pain exhausted me a bit, but the first day and night were a success. Unfortunately, I had to go home after dinner due to my illness, while the rest of the girls went out to a bar.
On the second morning, I woke up in unbearable pain. I couldn’t move and struggled to lift my head off the pillow. I yelled at myself internally, “Dani, you need to get out of bed. NOW!” I couldn’t do it. The weight of my head was too heavy.
That weekend was important to me, and I couldn’t bear the thought of missing any part of it. We had a light hike planned for that morning, but nothing too intense. I wanted to be part of it! I set the alarm for a little bit later, in hopes that a few more minutes of rest would help.
On any other occasion, I would have stayed in bed, but this mattered too much to me. I wanted to be there for my friend. I still don’t know how I mustered up the strength to do it, but I made it out of bed. Before I knew it, I was midway through the hike up the mountain.
Now, I would be remiss not to paint a picture of the motley crew that trekked up the mountain with me. Most of the girls neglected to bring water to the desert hike. We were also clad in shirts that said, “Save Water. Drink Wine.” At one point during the hike, someone started to cry. In another moment, someone applied lip gloss before posing for a group photo. They made it fun, and I somehow managed to wear a smile and make the most of the hike, truly.
I am still proud of myself for getting out of bed that morning and making the best of my migraine situation. It wasn’t just about being there to experience the day — I wanted to be there for my friend during an exciting and special time in her life.
At Thanksgiving dinner
After Thanksgiving dinner with our extended family, my mom, brother, and I went back to our house to spend time together. Getting time with my mom and brother is priceless and rare. We all live scattered across the country, and it’s hard to get all three of us in one place at one time. I knew that I needed to take full advantage of this time.
Unfortunately, toward the end of dinner, a migraine hit. The pain really began to take over as we headed back home. While in the car, my mom decided she would make me coffee as soon as we got home. This is a tactic that works to combat the pain for me, sometimes. In minutes, I chugged two cups.
As the three of us talked on the couch in the living room, my pain worsened. I didn’t even realize it, but tears were rolling down my cheeks, and I was very focused on my breathing.
I often lean on a self-taught breathing technique to keep myself calm and not get upset about pain I can’t control. I concentrate on each inhale and exhale by repeating the words “in” and “out” in my head as each breath is taken. In moments like this, I don’t want to accept or acknowledge that, once again, my migraine is stealing critical time away from me.
Unfortunately, the caffeine wasn’t enough. I spent the next two hours on the cold floor of my mother’s bathroom. I was on the verge of vomiting and struggling to lift my heavy head off the floor.
It’s hard to believe that the person that was lying on the floor of the bathroom is the same person pictured here, just minutes earlier.
These examples, and especially the pictures accompanying them, are a good reminder that what you see on the surface doesn’t necessarily reflect the reality. You may think you think you know what someone is going through, but you also have no idea.
UK/MED/18/0341 December 2018