It’s Not You, It’s Not Me — It’s My Migraine

I don’t want to feel like a disappointment. I wish I could make it to every appointment on time. I wish I could work at a job without all the stimulating fluorescent lights, talking people and stressful deadlines triggering my migraines. I wish that waking up in a post-migraine haze wasn’t such a chore for me. I wish, more than anything, that I had enough energy to maintain meaningful relationships.

I promise you it’s not personal. I don’t mean any disrespect. When my face is solemn, or worse, twisted in a horrible grimace, it has absolutely nothing to do with you. I am not sitting in silence to be rude — I am sitting in silence because it is often too difficult for me to speak through the nauseating pain of a migraine. When I cancel plans at the last minute or worse, don’t show up at all, it’s likely because I am in a dark room, writhing in pain, or completely knocked out by the latest drug I’m trying to treat my migraines. If you don’t hear from me for weeks, it’s not because I don’t care, it’s because my energy has been completely drained.

Even when I am not in the middle of a migraine attack, the side effects of living with chronic migraines continue to seep into all aspects of my life. The constant pain lingers in the form of ultra-sensitive nerves and a hair-trigger response to overstimulation. My body remains fatigued for days after an especially horrible migraine, and due to the frequency of my migraines, I usually find myself thrust into another attack before I have had the chance to fully recover. When my migraines creep up into a frequency of 15-plus days per month, I am often consumed by a depression that never completely goes away.

Today is day five of my latest migraine. I have been living with chronic migraines for over 10 years. My condition has progressively worsened despite many drugs and treatments, and I have only recently accepted that I might be dealing with this for the rest of my life. I didn’t choose this. I don’t like this.

For me, the worst part isn’t the constant pain. It’s feeling like I’m letting everyone down. It’s making new friends and losing them because I can’t keep up. It’s the opportunities I’ve missed because I can’t function during a migraine crisis. It’s the days of sunshine my daughter misses because I am in bed underneath a cave of ice packs.

The absolute worst part is the look on someone’s face, the change of tone in their voice, or their sudden silence that makes me think they, too, have given up on me. What I want, more than anything, is for them to know it is not personal. My inability to show up has nothing to do with them and everything to do with my chronic illness.

I know that can be difficult to understand. I know how hard it can be to place yourself in the shoes of someone with an invisible illness, to change your expectations and realize just how much of my life is completely out of my control. To realize that it is not personal, and that I am trying.

Everyone has layers. They have a face they present to the world, and an inner reality that might often contradict their outward appearance. Like many people living with an invisible illness, my surface layer often appears healthy. It can be really hard to imagine the severity of the pain it masks. When my pain does show through, it can appear in the form of fatigue or anger. My eyebrows press together and my temper grows short. My fatigue slows my reaction response, causing me to appear spacey or disinterested. If you are used to seeing my “healthy” layer, you might not realize that the pain breaking through is constant, and that I won’t return to “normal” after a few short days. For me, there is no “normal.” There are simply days when I am better at masking it.

When you peel back the top layer and the layer of pain that lies beneath, there is a deeper layer to my existence that is constantly fighting. This is the part of me that wants more than anything to show up. This is the part that longs to show you the better parts of myself, the parts that are good and strong and reliable. This is the layer that will never stop trying to break through the pain and prove to the world that I am more than my illness. I am more than pain and disappointment. There is a fighter inside of me that is working nonstop, every single day, trying to find a way not to let the pain of my migraines consume and control me. Like my illness, this fighter is invisible. You don’t see her, but she is there.

I have a fantasy of what my life would be like without migraines. I would wake up early every morning and my house would be spotless. I would lead a successful career doing something I love. I would take long hikes on weekends in the bright, summer sun. I would have a group of close friends and we would actually go out and do things. I might even have more kids. The best part of that fantasy isn’t what I would have, but who I would be. I would be on time, reliable. I would always have an open, friendly face. I wouldn’t feel like I let so many people down. I would be me.

My reality in this moment is a constant inner battle. I understand how difficult it can be for others to perceive my pain or comprehend just how hard I am fighting. I can see how easy it would be to assume I am simply not trying hard enough, or that I just don’t care. I wish that layer of me was more evident. I wish more people would understand it’s not about them. It’s not a personal insult. But most importantly, it’s not me.

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