But You Don't Look Sick
Invisible illnesses are overlooked and downplayed everyday.
“But you don’t look sick.”
“You’re just being lazy.”
“I had a headache once too and it sucked.”
Trying to downplay what our bodies are going through isn’t helpful—in fact, it’s hurtful.
Invisible illnesses are chronic illnesses that severely impair daily life. In the US, 96% of those who live with chronic medical conditions show absolutely no outward signs of being sick, and 10% of those people experience symptoms that are disabling.
You may not be able to empathize with those who deal with chronic pain or illness, and that’s okay. We aren’t asking you to feel our pain—that’s the last thing we want. We wouldn’t wish this upon anyone.
Those of us who live through pain and illness everyday want nothing more than to be able to participate. Missing out on life is hard. Our bodies are failing at being bodies, and being a prisoner inside of an inadequate body is exhausting.
We wanted to go dinner, but migraine had another plan. We were SO looking forward to that beautiful hike, but rheumatoid arthritis said “nope, not today!” We totally need to catch up, but maybe some other time, because fibromyalgia has us chained to our bed.
I have struggled through headaches my entire life. Looking back on my childhood, I remember having headaches and thinking they were totally normal because I didn’t know any different. Throughout middle and high school, I realized I had more headaches than my friends, but I never thought anything of it.
Then came my sophomore year of college. It was the spring of 2015. I had just come back from living in Italy for 3 months, I had made the greatest of friends, and I was living a life that I loved. Then came the pain. I couldn’t get out of bed for days at a time. Light hurt. Nothing made it go away. I couldn’t move far enough to get myself out of my dorm, into a car, and to an ER to get a little relief. I missed more classes than I could attend, and on the days I made it in the building, the fluorescent lights sent me back to my room, my brain throbbing harder than when I’d left. I felt helpless, hopeless, and alone.
I was diagnosed with chronic migraines. Migraines are deemed chronic when the individual experiences 15 or more headaches per month lasting 4 or more hours for at least 3 months. I am not alone. It is estimated that 37 million Americans experience migraines, while another 2-3 million have chronic migraines. Many people experience migraines on one side of their head, with additional symptoms including dizziness, nausea, light and sound sensitivity, throbbing, and vision blurriness. Some migraine sufferers have a warning of when an attack may come on, also called an aura, but some are not so lucky. They can hit at any time of day or night, whether or not you have avoided your known triggers and taken your preventative medication. When you are struck with a migraine, you can take your rescue medication, whether it come in the form of a pill, needle or a foul-tasting nasal spray. Even then, these are not always effective.
There is no known cure for migraines. Those who study migraines aren’t sure why they’re caused, and there aren’t even migraine-specific preventative medicines yet; most of them are anti-depressants, blood pressure medications, or another form of medication that has been shown to reduce migraines.
It is incredibly frustrating to be so out of control of your own body. I have tried countless medicines, including occipital nerve blocks, which involve two needles being inserted into the back of your skull at the base of your neck. My migraines are located on both sides of my head with intense throbbing and light sensitivity to boot. When I have a migraine, you’ll see me wearing sunglasses inside, drinking Coke like my life depends on it, and squeezing my skull in an attempt to momentarily relive the incessant pounding. And it doesn’t end there. When your migraine is over, there’s still the dreaded migraine hangover that leaves you exhausted and like you’ve been hit by a truck.
Migraines have affected more aspects of my life than I could have predicted. I can’t wear my favorite perfume anymore. I forget entire conversations and events while on migraine rescue medications. My memory on a non-migraine day is spottier than it used to be. Even the slightest ounce of exertion can cause my brain to spiral out of control. I have stopped hiking and rock climbing regularly, two things I love. Last July, I left the summer camp I have worked at the past few years, a job I LOVE, a month early because the heat and hiking were too much for my brain to handle, and I did not return this year because I was scared it would happen again.
I say all of this, not because I want your sympathy, but because I want you to be aware. The word “migraine” is not branded on my forehead to inform you of my pain the way a cast would a broken bone. Not everyone facing chronic pain and illness shows it on the outside. When someone says they are hurting, believe them. Don’t minimize their pain, but rather meet them where they are, and listen to them. You may be the only person in their life doing so.
When they can’t take their pain anymore, let them cry. When getting out of bed is the biggest victory of their day, send them the most excited celebratory Snapchat you can manage, because sometimes getting out of bed is equivalent to climbing Mount Everest. When a cold, dark room is their only solace, go in quietly and just hug them. We know you can’t take the pain away, but we love that you want to be there, and on the days we are able to let you be there, we are so grateful for your support.
To those of you living with invisible illnesses, please don’t stop speaking up and educating those around you. Never stop fighting the stigma that you are lazy, antisocial, or avoiding responsibilities. Because it’s not just a headache. Because it won’t just “go away with time.” Because I know that sometimes you can’t just push through the pain. Because your pain is valid and real. Because I see you, and I believe you, and I know it hurts and I want this to go away for you. Because your pain matters, but the one thing it does not have is the last word.
You still wake up every single day. You have made it to this moment despite all that your body has done to try and keep you from getting here. Your pain does not define you.