I’m afraid of disappearing.
I fear that like the Lyme bacteria inside my body, which change their shapes to hide from my immune system and my antibiotics, I’m becoming a tiny round ball: curled in on myself, invisible to the rest of the world.
This illness saps my energy and keeps me from working, from volunteering, from circulating in my community. And so I’m afraid that people will forget about me. I’m afraid they already are.
When I left work in 2015, I started this blog as a way of continuing to write, a way of thinking things through, and a way of sharing this part of my life journey. Crucially, it was also a way of saying, “I’m still here.” A career journalist, I was used to seeing my work in print and online all the time. It was part of how I defined myself. It was part of how I made my way in the world.
And now? My last blog post was nearly eight weeks ago (but who’s counting?). I have taken a couple of stabs at writing for other publications about my family history. One of those articles worked out. The other didn’t. I worked harder on the second piece than on than anything I’ve written in quite a while, so my failure to get it published hit me hard. That’s freelance writing for you — but when you’re battling fatigue, brain fog, depression, and anxiety, rejection is even tougher to take in stride.
The illness itself is invisible. People with visible disabilities face stigma, and I’m grateful not to have that added burden. When friends and acquaintances say, “You don’t look sick,” they mean it as a compliment, and I take it that way. Still, it reminds me that my suffering doesn’t show.
Fear of disappearing isn’t my only emotion on these bad days. I’m also angry: angry at the bad luck of having this illness, angry at the doctors who said there was nothing wrong with me, angry at myself for trying to believe them. And I’m sad about the going-on-five years of my life lost to this illness, time I will never get back, and the unknown months and years of disability that lie ahead.
Life isn’t fair, I tell myself. I’m better off than a lot of people. The treatment is working, and I’m slowly getting better.
True, true, and true. But those truths don’t save me from feeling invisible.
And yet I’m also afraid of making myself visible when I feel so diminished. I’m afraid of exposing my weakness, of being a kvetch, of engaging in self-pity. In other words, I’m afraid of publishing this post. But I’m even more afraid of not publishing it. Pretending I’m fine is no longer an option.
Given the choice of vulnerability or invisibility, I choose to be seen. If you see me, say hello.