As a person who lives with chronic migraine, it’s hard for me to comprehend why people often expect me to be sad, depressed and not handling things well. People actually seem to like me better when I’m having a bad day, but there’s a big difference between a bad day – even a bad month – and depression.
I associated how I was feeling with the idea of being positive, and that I’m allowed to be happy. Which is absolutely correct.
But the disconnect still exists.
I know nothing about mental health struggles because I have never dealt with them. I recognize that a huge portion of my lived experience overlaps with experiences of those who do struggle with their mental health, and there is nothing I value more than each and every one of you who have decided to share your experience with me because something I wrote resonated with you. But to answer the questions I get almost every day…
“How do you manage being in so much pain all the time?”
“What do you mean you aren’t depressed?”
“I could never remain so optimistic.”
“I just don’t understand how you do it.”
In short, my migraines are a neurological disorder and have no impact on my mental state. My migraines are incredibly painful, debilitating and influence other systems within my body. But for me, migraines are a physical disability even though they stem from my brain. They are not rooted in my emotions.
But why am I impacted so differently than thousands, even millions of other individuals?
I chose this.
A year ago I was pushing through my life full speed ahead. I was a full time college student and had classes starting at 8 a.m. on Monday that finished at 5 p.m. on Thursday. Friday morning I got up and went to work all weekend and on Monday evenings.
In between, I also started my blog. I was working on freelance interior design projects, moving into my own apartment and taking on the responsibilities of living alone, seeing a massage therapist once a week and having a doctor’s appointment every other week, all while striving to see friends or family one night out of each week.
My migraines are not any worse today than they were a year ago.
I don’t want to pretend I wasn’t an absolute wreck this time last year – because I was. I was constantly stressed out. I missed a lot of school and felt incredibly guilty even though I had an accommodation that kept me in good standing in all of my classes. I rarely missed work because I knew I could miss school without being penalized, but missing work meant losing money.
By the end of the semester, I sat down with my boss and requested a minor accommodation in case I did have to call off of work. As a part-time employee, I didn’t have paid sick time, but my boss allotted me a few days worth of paid sick time that could be used as needed so stress about missing work and losing money wouldn’t play into my worsening migraines.
After leaving that job to become a designer for Arhaus, I was finally done with the semester. I threw myself into my new job and for over a month worked close to 60-hour weeks. I had thought balancing work and school was making my migraines so severe. But taking on the same hectic schedule just with work didn’t really alleviate the “stress” of it all.
This is where it all ties together. In August, after reducing my hours at work in anticipation of starting up school and trying to control my migraines, I had a major decision to make. I recognized that the full speed ahead train I was on wasn’t healthy. I could either continue as a part time employee, picking up extra shifts here and there while working to better manage my migraines, or I could go to school as planned, get a roommate to reduce costs, and work to better manage my migraines.
I didn’t pick either of those options, even though they were 100 percent feasible for me.
I chose to press pause, to move home and to focus completely on managing my migraines. As a 20-year-old who “knew everything,” the one truly correct decision I could make was to press pause.
Recognizing that I was disabled by my migraines didn’t mean I was any less than my able-bodied coworkers. For me, it was about not waiting until I had worked myself so hard that there was no “point of return” — or worse, waiting until the migraine attacks were so severe that I ended up in a car wreck or had an accident at work, school or my apartment that caused irreversible damage or death. I chose to recognize the faults in my approach.
Last year was the first time I truly had a doctor misjudge my treatment approach and create a setback in my migraines. It’s foolish to not recognize that the first neurologist I saw in WI who decided to switch up my medications so dramatically sent me into a helpless cycle of overusing medication. Then my DHE infusions set me back for a week in May as the side effects lasted for days.
Treating chronic migraines means recognizing adjustment periods when it comes to new medicines and new treatments. I would not have been successful at work or at school last fall when my body reacted so negatively to Aimovig. I also would have struggled tremendously earlier this year when Botox prevented my neck muscles from working properly. Those are risks that have to be recognized, and getting chronic migraine back down to a manageable level involves multiple, in-depth attempts at treatments which may or may not be effective.
This month, I’ll begin using the Cefaly device and starting the 18-week lifestyle program. I don’t know how in-depth or “invasive” either will be.
Stress was an incredible factor. It didn’t matter if I worked seven days a week, five days a week, or two-and-a-half days a week. I was in agonizing pain whenever I wasn’t at work. This concept is called a “weekend migraine” where the stress from the week causes you to have a migraine once you try to relax. It goes back to the idea of keeping your routine consistent to best manage migraine and reduce risk for attacks. Eliminating work and school altogether doesn’t eliminate stress, but it eliminated the “weekend migraine” I had on my days off.
Now, I have roughly three to five hours of “productive time” a day – most of which is spent writing or painting, and then I can relax and unwind into the evening. The productive time isn’t strenuous in nature, but it is consistent almost every day. Having discovered a routine that works for me, I can slowly start considering options like minimal part-time work that I can do from home or online classes. My migraines aren’t better, my symptoms aren’t better, but I have a better grasp on my time, how much energy I have, and what is feasible for me.
Sure, I spend a lot of time alone. I don’t get out of my house very often and I certainly don’t get much sunlight.
First things first… I’m not very fond of sunlight or other people. That also isn’t new with migraine.
I also have a lot of support. The bulk of that support comes from my parents. They strive to make sure I have everything I need from the right food, to assisting with rescheduling doctors’ appointments or doing little things that put a smile on my face. They’ve alleviated the stress of paying for rent, groceries and the majority of my medical/insurance costs.
My best friend has migraine, so we have each other to lean on. But I’ve also built a large group of people who surround me online. There is always someone I can turn to. Every week someone new comes across my blog and we connect on some level. I know these people are there for me, so even though I may be alone in my dark room, I am constantly able to be connected.
I don’t actually have a reason to be unhappy. I cannot be angry at a neurological disorder. I cannot give in to the bad days, or the people who strive to remind me that I add no value to the spaces I inhabit. Those people are simply incorrect.
I understand why you ask. I understand why you are confused. I understand when you haven’t been along for this entire ride, how some days I may come across like I’m in a really dark place, but I’m not.
It’s because I chose to be here. I chose to give up all the things I loved about life, knowing that I will get my migraine attacks under control, even if it takes a few years, and I will create a life for myself that is truly incredible. But you see, I’m still just a kid and I know I have a lot of years ahead of me. There’s no point forcing myself to work through my disabling migraines and get a degree when I still don’t know exactly what I want to be doing. Why not take this disability as it is, strive to improve it, and be able to enjoy the rest of my life down the road?
Migraine doesn’t impact my mental health, because migraine allows me to grow and develop into a better person. It gives me fortitude that I will carry with me the rest of my life. Migraine gives me a taste of what self-care really looks like, and how a desperately needed shower, clean sheets and eating all of my meals is much more important than some face mask or bubble bath.
Today I am just as disabled as I was this time last year. The only difference is the government agrees with me and sends me some money to aid in getting better and getting on the right track.
I chose to be mindful of my health, and maybe if I hadn’t made that choice my mental health would certainly be a factor.
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Author: Alex Tomlinson