One of the many challenges and frustrations of having a chronic condition that mandates wearing a visible device every day is when that disability is relatively unknown outside the breast cancer community. Imagine that you had diabetes and needed an insulin pump to regulate your blood sugar. Someone might catch a glimpse of your pump under your clothes and ask what it is. “An insulin pump,” you’d say, and the conversation could be over.
Now imagine that you have lymphedema and you must wear a compression sleeve every day, and a tighter compression sleeve when you exercise or fly in airplanes. Imagine you are in a yoga class, focusing on your Ujjayi breath, when suddenly you hear the instructor say, “You there – you in the back! Yes, you. What’s that thing on your arm?”
Flustered and aware that a room full of strangers is now staring at your misshapen figure, you stammer, “Uh, um, a compression sleeve.”
“What’s it for?”
“I, uh, I have lymphedema.”
“It’s a chronic condition that involves swelling of the extremities due to insufficient lymphatic fluid movement throughout the body secondary to removal of the lymph nodes and common in women who have had mastectomies to combat their breast cancers. Shouldn’t we all come out of Warrior Two now?”
Okay, that last bit is an exaggeration, but the first part of that exchange really did happen to me during a yoga class. The instructor was tactless and callous, but the real problem for me is that there is no easy answer to “what’s that thing on your arm?”
Variations of that conversation happen to me all the time, mostly by well-meaning people who assume I have sustained some minor injury, like spraining my elbow, and are legitimately concerned about my well-being. Although one person asked me if it was a cover to hide embarrassing tattoos. At a cocktail party. For my work.
It’s been a challenge for me to come up with something to say that is polite and clear, but also firmly conveys that this is not a conversation I wish to have. It’s never easy to discuss your breast cancer with casual acquaintances, and there is really no way to avoid going from “I have to lymphedema” to “I got it because I had a double mastectomy.” And yes, there was chemo. And yes, it was awful. And no, I do not want to hear about your second cousin twice-removed who had breast cancer and cured herself using only vitamins and meditation. Amazing!
All of this is compounded by the fact that the sleeves are ridiculously ugly. (Yes, I know about LympheDivas – they are fantastic, but unfortunately, they don’t fit me, so I’m stuck with the Medi brand sleeves, which are unattractive in a way that only a true medical device can be.) You can’t wear long sleeves all the time because it is difficult to fit your enormous arm into your regular size clothes. So you have to buy one size larger shirts to accommodate your arm, which makes the rest of your torso look like you either borrowed your mother’s clothing or don’t know how to dress yourself. So you start experimenting with sleeveless tops or tank-dresses and we’re back to the original problem of the ugly compression sleeve. And that it’s winter and you’re freezing.
So what’s a girl with lymphedema to do? My personal solution has been to invest in a lot of very sparkly jewelry that makes me feel glamorous no matter what monstrosity is on my arm. I am however, still looking for a good, short answer that would have shut down my embarrassing exchange with the yoga instructor.
Have some ideas? Fabulous. Leave them in the comments and let’s have a conversation on our terms, on our time, in our community. No downward-facing dog required.
Related Reading: On Lymphedema, Serial Killers, and Therapeutic Torture Devices