It’s Personal: I Have Alopecia

I first noticed it shortly after Joanie was born. As is typical of the postpartum period, my hair started falling out right when my baby turned four months old. I remembered it when Jackson was a baby, too, and the women in my new moms group all talked about this unpleasant side effect of new motherhood over our weekly lunch dates, bouncing our babies on our hips while juggling plates of salads and fruit. The irony was lost on no one that as soon as we started looking and feeling a little like ourselves again, our hair started falling out. “There’s so much hair in the drain of the shower every morning,” they’d say. “I brush my hair and it all comes out!” “I’m shedding like crazy.”

So, when I found myself making those very same comments a few months after Joanie was born, I shrugged it off. This is normal, I thought. It happened after Jackson was born, too, and eventually my hair stopped falling out and it all grew back. But this time, months went by and the shedding didn’t slow down. In fact, it got worse. In the shower, I’d rinse out the shampoo, and clumps of hair would fall out into my hands. Fistfuls of it! I’d find my hair everywhere — covering my sweaters, on my pillow cases, hanging from my scarves. I’d sweep our apartment and fill the dustpan with my hair that had fallen out over the previous 24 or 48 hours. Even a year postpartum, it didn’t slow down, and there was no regrowth where my hair had already fallen out; there was only a shiny white band where my hairline used to be.

My eyebrows fell out, too. They’d been thin for a long time. A few weeks before my wedding in 2009, I got a makeover at Sephora to help me figure out what makeup I should buy for the big day. “You have no eyebrows!” the makeup lady tactfully said as she penciled in some fake ones over the thin lines of my own I still had. A makeup artist at The Today Show two years later when I appeared as an “etiquette expert” was more diplomatic about it. “Wow,” she said as she looked at my finished face, “You look so different with makeup.” What she meant, of course, and I understood this by then, is that I looked different with eyebrows. Who doesn’t? By the time Joanie was a year old, I had no eyebrows left. Less than a year later, I bit the bullet and got semi-permanent tattooed brows (aka “microblading”). Now, when I wake in the morning I have the illusion of eyebrows without having to mess with makeup. That’s nice. But my hair. I’ve lost so much hair and there’s no tattoo that hides that. There’s nothing that treats this. There’s nothing I can do to make my hair stop falling out. I can style it in a way that camouflages the loss, and I can wear hats, but the minute I pull my hair back, or a gust of wind blows it out of my face, my secret is exposed.

Last year I was diagnosed with frontal fibrosing alopecia. It’s an autoimmune disorder and not my first one. I also have Hashimoto’s disease, which among other effects, can lead to the loss of one’s outer eyebrows. The alopecia is just another blow. More than eyebrows, it steals a person’s normal hairline, receding it until there’s little left but the crown of one’s hair (as you can see from the photo, I’ve lost nearly two inches from my hairline so far). It affects mainly women well past menopause. I was 40 when I was diagnosed (still years away from menopause, and a good 20-25 years younger than the average age of diagnosis), and I have not met or connected with anyone else who’s been diagnosed so young. I worry that to start losing my hair at this age means I will still have so much of my life left to navigate without hair or with very little hair. I know it’s better than the alternative — of not having much life left. This kind of autoimmune disorder, after all, is mostly a vanity issue. My health is still fine (as far as I know).

There are lots of message boards for women experiencing hair loss, and I’ve visited a bunch of them. There, women discuss wigs and headbands and makeup and microblading and styles that camouflage a receding hairline. Most of these women are cancer patients. On my worst days, I feel jealous of them. There’s treatment for what they have. They can fight and get better. Their hair will grow back and mine will continue to fall out indefinitely, years after they’ve moved on with their lives. (Maybe worse than the hair loss is feeling like such an asshole. Who gets jealous of cancer patients? Assholes, that’s who.)

I’m not fighting for my life and, clearly, I haven’t gained the perspective of someone who is. I am stuck, solely, on what I look like, on the image I want to project, on what I will look like years from now. And I struggle with this, too — on taking my good health for granted, on getting lost in my own vanity and forgetting what a blessing it is to worry about the next 50 years of my life. This is not something I want to pass on to my own children, especially my daughter — the fear of being ugly, of being so consumed with one’s own problems and appearance, of feeling so vain. If I’m going to keep losing my hair — and maybe I’ll get lucky and I won’t, but if I do — I want to do so with at least a fraction of the courage I’ve seen so many others who are battling far worse problems exhibit. But it’s a challenge — to feign confidence when you’re slowly being stripped of perhaps the biggest symbol of femininity and youth and beauty, especially when evidence of that loss is literally everywhere. In the shower drain, in your brush, on your clothes, in the broom, caught on the stubble of the person you love when you pull away from a hug. It’s everywhere.`

Maybe more than wanting to keep my hair, I want to keep my dignity. Maybe saying that, maybe sharing this, maybe stripping some of the power a secret always holds will help.