November 28, 2018
A couple weeks ago, my husband and I had two friends come visit us from Michigan, our home state. This trip had been planned for months and it was their first time visiting us. I was so excited to see these kind, hilarious people.
Our friends’ plane arrived early on a Friday morning. They got in right as I was getting ready to leave for work. My husband planned to show them around until I was done with work, then I would meet up with everyone for dinner. Toward the end of the day, I got that feeling. When I know a migraine is coming on, I get this stinging feeling around my eyes and right on my forehead. It was around 3 p.m. and I kept telling myself “You have to get through this, you HAVE TO. Do NOT ruin it for everyone.”
I got home before they did and immediately put an ice pack on my head, gave myself an acute-treatment injection and drank a lot of water. It worked for an hour – enough time to enjoy myself at dinner. We ended up calling it a night early since they had been up since 4 a.m. and my headache wasn’t improving. Before we went to sleep, our friend pulled me aside and said, “Do not feel obligated to hang out if you don’t feel well. We want you to get better instead of toughing it out because you feel like you have to.” Did I mention how kind these two are?
I hoped I would at least have one full day with them, but I know my body and I know that my migraines don’t last for just one day. From Friday to Sunday, I laid in bed in a pain stupor and only emerged when they came back to the apartment. I felt awful, but I still wanted to see them and hear about their Philly experience. By Sunday night, I was feeling better, but still in agony. I pushed myself to make it out to dinner before they left. I wept multiple times that weekend, mourning what could have been.
Migraineurs want to have social lives, we want to see the world, but there is always looming dread that a migraine attack could ruin it all.
If you haven’t gotten my point, making plans with this disease adds another layer to our stress and how it affects our mental health. It’s one of those migraine side effects people don’t see. We often hide it because we don’t want to be a burden on others. To understand how making plans affect migraineurs, I’ve compiled what it’s like for us.
Whether it’s a vacation or dinner plans, anytime we schedule something, there’s this dread of what could happen. For me, I have learned to shy away from making plans, which can look flaky or disinterested. This is not the case. Migraineurs want to have social lives, we want to see the world, but there is always looming dread that a migraine attack could ruin it all. It’s not fun being a person that can’t be counted on, and we are acutely aware of how migraine can destroy all your excitement and everything you had planned.
Ah, vacationing with migraine! It’s always an adventure. Within the past year, my migraine attacks have gotten so bad I've become terrified to take a vacation with my husband. We enjoy hiking, which is not the kind of environment that’s migraine-friendly. When packing, my migraine supply kit is most important. I can always buy more underwear or clothing. What I can’t do is go out and buy back all my prescriptions. When I travel, I double- and triple-check that I have everything I need in the event of an attack. Then I get my clothes together.
Luckily, I haven’t faced an attack while on vacation. I have, however, had attacks on multiple work trips. They've ranged from mild headaches to full-blown migraine, with stinging, sharp pain in the front of my forehead. For these, I pull together all the strength I have in me and do what needs to get done until I can hibernate in my hotel room with an ice bag on my head.
What is hard for us to recognize is that canceling should not come off as flaky to anyone. Flaky people cancel plans because they don’t feel like going. We cancel plans because it is physically impossible for us to go. It’s a huge difference between the two situations. For people who aren’t familiar with migraine, it’s easy to look at these interrupted plans as flakiness, which is why education and awareness is important.
Our fear of being labeled as “flaky” is because of our experiences with others. I’ve had people treat me differently during an attack because I had to cancel. Whether it’s a missed work day or an outing with friends, I’ve experienced blowback, confrontational or passive aggressive. It’s hard on an already-difficult situation, so any kindness you show to us is appreciated more than you understand.
Migraine pain is enough to send us into a downward mental-health spiral – however, there are so many other mental-health aspects of migraine many people don’t know about. When we make plans and can’t follow through, our mental state is attacked by all the fears mentioned above. We want to be good friends! Unfortunately, this disease means we can’t be there for friends as much as we like, and it’s emotionally painful. We feel like a burden and we always worry about what our loved ones think when we are not fully present.
I’ve talked about this in previous columns, but there is a mourning phase for many people. Migraine takes away so much life, including our plans. We mourn for what we could have done if we didn’t have migraine. We cry for the plans we miss and the friends we inconvenience. With all this weighing on us, our mental health will in some way be affected.
My hope for this piece is that people will better understand the internal struggle all migraineurs go through when they schedule plans, vacations or work trips. We are terrified and anxious and many times, our anxieties are confirmed by people who do not understand our disease. If you have someone in your life with migraine, go easy on them. They are probably having a much worse time than you.
The Monthly Migraine is a series dedicated to migraine awareness and support. If you suffer from chronic migraines, you are not alone and we hope to amplify your voice through these pieces. Lindsay Patton-Carson can be reached on Twitter @LindsayPatton.