I have spent almost my entire life trying to pretend that I am as strong or capable, if not stronger, than ordinary healthy people. Most people avoid plane flights lasting over 6 or so hours. I have lost count of how many plane trips, either non-stop or total flight time, I’ve taken—including a few that were around or past the sixteen-hour mark. I glory in being able to do that and tell stories about my flights, like the Air India flight from Chicago to Delhi on which a ninety-year-old Punjabi woman who didn’t speak English gave me her consulate issued passport and customs form to fill out and I had to figure out how to put in her birth information, when the country she was born in no longer had sovereignty over the land she was born on.
I don’t talk about the recovery time I need after one of these marathon trips. I get to the hotel and feel every part of my back crack and pop as I lay down on the soft hotel bed and only get up for water and trips to the bathroom for the next eighteen hours or so. I’m too tired and sore to even want to go far to forage for food. I’ve always hidden these kinds of details, thinking it makes me look weak, less able than the next person to do what I want to do, to be worthy of the job, the funding, or scholarship.
One of the struggles of keeping this hidden, is that somehow, I find I have to mention my back at some point early on in a new relationship of any kind, for a huge variety of reasons. I try to put it off, but something happens to bring it up—it always happens, they notice I don’t slouch or see the top or bottom of my scar when I turn around—so I give my spiel. I had back surgery twice in my teens to put rods in my back because my spine was in a dramatic S-curve. Nope, no accident, but a genetic disease called scoliosis. Often, then someone tells me about their friend with scoliosis who had to go to the chiropractor once a month in high school. I smile and nod, and want to say, nope, not remotely similar.
Then they ask if I’m in pain. I still don’t know how to answer. Um, yes, but in different parts and at different times. Sometimes it’s a knot in the frozen muscle in my upper back, sometimes it is a soreness in my degenerating hip, and sometimes I just feel so tired that I can’t get off the couch after a long day. I sit uncomfortably on subway seats at the end of the day, wondering if others are judging me for not being young and fit and standing.
I also don’t know how to talk about how I feel in terms of disability. Do I have an invisible disability or disability at all? I can’t study in the library, because I can’t sit at a desk for very long, but I can work twelve hour days at home from my couch. I can do a lot of things if I have the time for recovery afterward. Would it be easier for others if I used the language of disability? Should I use that language? I read about people talking about their disabilities, including mental illnesses, from which I also struggle—OCD and anxiety—and I am inspired. I want to share my own stories if doing so will connect with others—especially those with similar experiences.
I used to think and still struggle with thinking that being silent and doing everything everyone else can do was being strong. Now I think that sharing my story is a way of being strong. Brene Brown writes that shame can only be extinguished with storytelling, that the way to connect is by being vulnerable. Being honest about how my life is impacted every day by my back, even when I wish I could pretend it wasn’t, makes me feel very vulnerable. I’m afraid that all my fears will be true, that people will think I’m weak if I ask for accommodations or need recovery time from everyday actions, or think I’m less capable for a job or fellowship.
But with therapy, a dose of the good side of the internet, and I’m learning that these fears, are fears that are keeping me from being honest and connecting with people. And I’m tired of not being authentic. And worse, I’m beginning to believe not being honest is hurting other people, who feel that the silence is a confirmation that they should and need to be silent too. So I’m starting here.