This seems to come up a lot here on the site (and in my life). Here's what I wrote in my personal blog recently. I thought it would be good to share with you all, to see your thoughts.


It happened again.

I am shopping at Macy’s when a curly-haired brunette catches my eye from across the circular clearance rack.

“Chemo?”

“No,” I hold her gaze. “Alopecia.”

“Ah. I know alopecia. Your hair will grow back.”

In my alopecia support group, I’ve known alopecians whose hair grew back. Jeanne’s regrowth was triggered by pregnancy. Something about the hormonal changes of carrying a child reversed the immune system’s attack on the hair follicles. Her hair fell out again post-pregnancy, but for a time she got to feel the wind blowing through her hair without the slightest bit of worry. Lorna got her hair back after getting a series of steroid shots in her head. That’s a common treatment for alopecia, but only for the short-term, and usually for small patches instead of whole heads. Most doctors won’t even do it in cases like hers. But Lorna is articulate, and clever, and she talked a hesitant doc into it – with great success. Several other ladies got their hair back unexpectedly, spontaneously, for no known reason. Alopecia is unpredictable like that. You never know what could happen.

I haven’t had a full head of hair for sixteen years. At this point, it is highly unlikely my hair will grow back.

But to my fellow shopper, I don’t say that.

She goes on to tell me she’s a hospice nurse, and a cancer survivor. “I’m sorry to bother you, I just can’t help myself. I get so passionate about helping people with cancer.” She looks at my scarf, the dressy black one I tied on that morning for a meeting in The District. “And I just thought, well, you know.”

Sometimes I feel like a fraud.

Well-meaning women see the scarf as a signal that I’m in the sisterhood, an invitation to connect. They tap me on the shoulder while I’m reaching into the grocery store freezer. They approach me while I’m sitting at a restaurant waiting for a friend. They lean over at a wedding and place a hand on mine, gently, tenderly, and tell me I’m going to make it. They’re not talking about the hair; they think I have cancer.

Each time, I provide a brief, educational statement about my own disease. Just like the Macy’s shopper, they listen. They wish me well. They usually apologize.

No, I want to say, I’m the one who’s sorry, for drawing you in unnecessarily, for misrepresenting myself, for committing sisterhood fraud – as if scarves are reserved for the sick, the domain of cancer patients actively undergoing chemotherapy.

From Merriam-Webster:
Fraud \ˈfrȯd\ noun
1 a: deceit, trickery ; specifically : intentional perversion of truth in order to induce another to part with something of value or to surrender a legal right b: an act of deceiving or misrepresenting : trick
2 a: a person who is not what he or she pretends to be : impostor ; also : one who defrauds : cheat b: one that is not what it seems or is represented to be

I do not wear scarves to solicit support from people whose lives have been touched by cancer. I wear them because they’re comfortable, and fun, and affordable. I am pañuelo girl, the girl with the scarves.

And in all honesty, I felt more like a fraud when I wore wigs, especially once I upgraded to the vacuum-seal, custom hair pieces made of fine European hair. People asked where I got my hair cut, what dye color I used, how on earth did it dry so fast? I could have fessed up, but I didn’t have to: $3,500 buys you a natural look, one that easily fools people.

Of course, I didn’t want to discuss alopecia back then. A headscarf, especially on a bald girl, can be a conversation starter. You have to be prepared for questions. You have to want to explain and educate.

Shortly after the Macy’s shopper and I part ways, she pops her head back around the corner.

“You know, you don’t really need hair,” she says. “You’re beautiful without it.”

Maybe the sisterhood extends well beyond cancer.