What I Heard When My Friend Commented ‘You Poor Thing’

“You poor thing.”

Her face was contorted in an approximation of pity, but that one sentence has stuck with me for years. Not because I didn’t want to be pitied (although I didn’t), but because she confirmed my suspicions that my illness wasn’t as invisible as I wanted — and as a consequence, neither was I.

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On the day in question, we were meeting at a writer’s conference in Boston. I had spent the previous six weeks at the Vermont Studio Center on retreat, working on the manuscript that would become my first book. Several weeks prior to that, I had traveled to Las Vegas to cover a tech conference with my fiancé, enjoying some world-class meals and reconnecting with an old friend as we wandered the lavish casinos and saw the sights. The weekend before that, I’d graduated with my MFA in writing. I was on sabbatical from my job as a reporter, a job I loved, and on this particular day, I reunited with friends from undergraduate and graduate school, some of whom I hadn’t seen in years. It was, by all accounts, a great day in a pretty great life.

But what she saw was someone to be pitied.

At the time, I had not yet been diagnosed with fibromyalgia and chronic fatigue syndrome but was handling the symptoms as best I could. One of my doctors had prescribed wrist braces to help with shooting pain in my hands. I wore them when I typed, wrote or used my hands for any length of time. I used a walking stick periodically and had it that day to cope with the dizzying effects of heinous hotel carpeting, anxiety-inducing crowds and a tiring conference schedule. I was exhausted and in pain, but that was nothing remarkable. Concealer is a magical thing, after all. My hair was done, some of my favorite clothes were on my back and I’d just heard a fantastic lecture. I felt pretty dang good.

What I heard from my friend’s comment was that, in her eyes, I didn’t look that way at all.

To say it ruined my day would give that moment too much credit. It passed, as moments do, and we took a group photo, had a few glasses of wine and went our separate ways after much (gentle) hugging. But even years later, I remember that comment long after anything else we talked about has faded. It shook me to my core, because it confirmed my deeply held fear that people were staring at and judging me. That I was an object to be pitied instead of a fellow human being doing what she could to get through the day.

She didn’t mean any harm and probably thought her sympathy would make me feel supported. But it made me feel exposed and left me raw for a long time afterward. Words can do that. If I could go back in time, I’d tell that friend to save her pity for someone who needs it. That her pity was not only unnecessary, but it reminded me of my struggles when I was enjoying a good day. People who’ve never experienced illness or disability may not realize there’s a pride element in how we’re seen at our lowest — that I’ve had to psyche myself up to leave the house on bad days, not only because of how I feel, but because of how I look to the rest of the world. It takes strength to appear weak, and even the most well-meaning acknowledgements of that weakness can knock the sturdiest of us down.

I’m learning to be more open about my limitations, but I still have a hard time sharing my struggles. Interactions like these — and there have been many, both before and since — don’t make opening up any easier. Be kind to your friends who live with illness and disability, but even more importantly, be sensitive to how your intended kindnesses may be perceived. Their impact may surprise you.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

MORE ABOUT FIBROMYALGIA:

Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.