Hello, I Live with Chronic Illness and Sometimes it Sucks, But That's Okay
I've been sick for 18 years.
There. I've admitted it to myself and to anyone who happens to read this blog post.
About 18 years ago, give or take, my episodic migraines became chronic. I didn't realize it at first. Or maybe I just pretended it wasn't happening. Because that's what living and working with chronic illness taught me to do: pretend to be okay.
Pretending As a Way of Life
I pretended I wasn't in pain. I pretended my brain was working. I pretended I could look at a computer screen and make sense of the words on it. I pretended I wasn't about to vomit. Then, when I was alone, I'd curl up in a ball and wait...
"This will pass. It always does. You can do this. You can get through this."
When I felt well, I'd use those precious hours to catch up. I worked twice as hard and twice as long to make up for the times I couldn't.
That's what invisible illness and disability have been like, at least for me. Years of pretending -- for myself and for others too. I hid the reality of my illness, because I didn't want to be seen as a whiner, as unreliable. I didn't want to make people feel uncomfortable. I only asked for help when it was dire, and I let people feel good about accommodating me. Because if I asked for help every time I needed it, who would possibly answer a call like that?
So, for nearly two decades I hid the true cost of being sick, a shameful secret.
Then, 20 months ago, an old hip injury came roaring back and all of a sudden I couldn't pretend the way I usually did. I couldn't hide a limp. When I got surgery, I couldn't hide the leg brace or the crutches I used for two months. In public, I couldn't hide how slowly I moved. Our Brooklyn walk signs changed from walk to don't walk when I was only halfway across the intersection. One driver yelled ableist slurs at me because I was too slow. Lyft cars cancelled my rides to physical therapy when they saw my mobility aids.
People were also kind. They SAW that I needed help, so they offered it.
For the first time, I had an illness that was visible.
And it changed how I think about my invisible illness.
There is Always a Price
Being sick sucks. This is the truth that I was afraid to admit to myself. For 18 years, I'd worked with traditional and alternative medicine to try to control my symptoms. Because the thing about migraines is: there are no answers and there are no cures. All you can do is try treatments -- then wait to see if they make things better or worse -- and figure out your "triggers."
Triggers are the activities that contribute to migraine flares. They can be things you control (the food you eat) and things you can't control (the weather). It takes trial and error -- aka lots of pain -- to identify triggers. But the pain doesn't stop once you find the trigger. Because then you have to eliminate it from your life or find a way to work around it or just accept the consequences.
I stopped drinking alcohol (no more going to bars with friends). I stopped eating sugar (no more desserts -- EVER). I tried every elimination diet and headache diet under the sun, and found at least a dozen food triggers (no more eating out and ordering the most interesting thing on the menu). I have to keep a strict sleep schedule (no more fun evenings out without guaranteed pain the next day). Altitude changes on airplanes give me brutal migraines that can last a week or more (so for 12 years I only traveled by train). I get post-stress migraines from work deadlines, which in grant writing are constant (so I accept that 50% of Saturdays I'll be sick).
And then, the fun part is that even if you control all of your triggers, you may still get sick. A storm rolls in: migraine. I pull off a big deadline at work: migraine. I do everything right: migraine.
So you make trades: in exchange for writing one night when inspiration hits or meeting that impossible deadline to impress your boss, you accept future pain. You never know how much it will be -- a day, a week. But there is always a price. No matter how supportive your family and closest friends are (and mine are incredible), only you can pay that price.
For me, the experience of finding and managing triggers has been like shaving off pieces of myself. Winnowing down my hopes and dreams. Making my world smaller and smaller. Convincing myself that I am okay, that the pain will pass, even though I know it will always come back.
And, along the way, carrying the weight of pretending that everything is okay.
Having a visible manifestation of illness -- a limp, mobility aids -- I realized that I can't change my body. I can't control every trigger. But I can choose to put down that weight of hiding the cost of chronic illness.
And maybe, just maybe, if I put down that weight, I can make it a little bit easier for the next person.
It's Okay to Be Sick
So over the last year, I started sharing my experiences. With writing groups. With friends, old and new. With colleagues. And I discovered that when I shared authentically about my experiences, people shared back. Together, we created a space that was almost magic -- a space where it was okay not to be okay. I met other writers with chronic illness and invisible disability, and discovered that we had gone through so many similar challenges.
Suddenly, I wasn't alone in my experiences with the fear and frustration of chronic illness. But I didn't just connect with people about being sick. Especially with other writers, we shared our goals and how we were working WITH our illness and disability to accomplish our goals. We talked about how realizing our experiences might be worth sharing. We imagined the difference it could make if we spoke up.
And it made me wonder if there were pieces of myself -- hopes and dreams that I'd given up -- that maybe I could find a way to reclaim. That's what this blog will be about.