The Daily Struggle of an Invisible Illness
By: Carmen Wright
The invisibility of migraines complicates the access to a diagnostic and proper care for longer than anyone should be expected to live in physical and emotional pain.
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Migraines are largely misunderstood by those who don’t suffer from them. They believe it’s just a headache, so why don’t we take some pills, and it’ll be all better. They don’t understand the mental, physical, and emotional toll it takes. The isolation that comes with having to cancel outings because a migraine snuck up on you; the inability to walk because your strength has been zapped, the tears that want to come because you feel like you can’t do this anymore, that the pain is unexplained, and you question why you’ll live the rest of your life like this.
Since I was a child, I’ve had chronic migraines. A source of joking and ridicule from others, migraines are a debilitating illness that people scoff or even roll their eyes at. I’ve received it from my family and doctors.
I don’t remember when these migraines started. I do remember every time we had to clean the house or had a full day of moving, I would have one. There was a lot of “Carmen is trying to get out of helping” going on, and after a while, I figured out that I had to pretend to be okay if I didn’t want to be ridiculed. This is a practice I still continue to this day.
I would go to school with a migraine and sometimes retreat to the nurse’s office. Since they couldn’t give me Tylenol, I had to lay there and hope that it went away. I can’t remember if they ever did go away. Nor can I remember if I was ever sent home for a migraine. My best guess is that no one would believe a child had migraines that often.
Because my migraines were often, I learned how to gauge the intensity of them with the number of Tylenol tablets I needed to take. This eventually developed into Excedrin tablets, then Ibuprofen. I became adept at sneaking these tablets because I was sure my family wouldn’t understand that they were the only way to relieve the pain.
My pediatrician believed sinus allergies were the reason for my migraines. He came to this conclusion after I recorded a “headache journal.” If you don’t know what this entails, you’re supposed to detail each headache you experience, how long they last, pain level, and what triggered it. Those are the basic items for each entry, but I’ve seen more details that seem unrealistic to record when you’re ill. It wasn’t until I was in my early 20s that I made any headway with my illness.
My primary doctor had me make yet another migraine journal and concluded that my migraines were frequent enough to be prescribed medication. It was the first time in which I was taken seriously! I remember thinking that I would be able to lead a productive life. The medication worked for some time, but I had to make other changes as well. To this day, I don’t eat gluten, make sure my blood sugar was regulated, wear sunglasses and/or a hat when I’m outside for a period of time, and make sure my sinus allergies are in check.
Waking up in the morning is a lot of work. My daily routine starts by gauging how I feel. As a result, I’m able to prevent migraines by taking quick action. Sometimes, they go away quickly; other times they don’t. On those days, I take as many Ibuprofen as safely as possible before I go to work. Luckily, there have been only a few times where I’ve had to leave work early because of my migraines.
Since my illness is invisible, I strive to make up for the times when my body won’t cooperate. I work in retail and my illness doesn’t allow for hiding away from customers or even sitting out for a few minutes. When at work, I may not be as fast as I usually am, but I try to do the same amount of work. I walk at a slower pace and try not to do any fast movements. I put extra effort into comprehending what customers are telling me. I do everything I can to hide my illness. Admittedly, it fills me with a twisted pride when a manager tells me that they didn’t realize I was sick that shift until it was mentioned (perhaps it is because of criticism I received when I was younger). It seems I can work with a migraine; it makes me wonder if my managers think I can still work when I (rarely) call out because of them.
Carrying the weight of an invisible illness on your own is already hard. It’s more than a headache. And it’s never only an excuse. You should be cared for.
Organizations like the Migraine Research Foundation, National Headache Foundation, and the American Migraine Foundation are working towards the understanding and erasing of this condition and offering support for those living with headaches and migraines.
Our web app at if-me.org, can act as a migraine journal through the Moments feature. You can also set reminders to take your Medication once your treatment starts. Set up, discover, and share the Strategies that help you regain strength. Find Groups, and invite your trusted Allies, to shine a light on your story.