Hair loss: Exhausting, agonizing

An agonizing secret: One woman's story of loss

Editor's note: Lisa O’Neill Hill is the co-owner of a writing, editing and consulting business in Southern California.
My long, thick red hair - the thing I liked most about my looks - began to fall out 5 years ago, when I was 37. I’d perpetually pick hair off my arms, my back, my car seat, my bathroom counter. My shower drain clogged easily. Running the vacuum meant enduring the smell of burning hair.

At first I thought the shedding was temporary and must be connected to a medical problem. I consulted eight doctors, endured dozens of blood tests and spent thousands of dollars. I secretly hoped I had a thyroid problem, a hormone imbalance, some kind of vitamin deficiency, even lupus. I needed an explanation. But all the tests came back negative.

A few years ago, I flew from California to New York to see an endocrinologist who specializes in female hair loss. He diagnosed me with genetic hair loss and prescribed a daily regimen of several medications, including Propecia, a hair loss drug that is only FDA-approved for men.

That doctor gave me hope, but that hope has long since faded. Although his regimen has worked for many, it didn’t for me. I suspect nothing will.

After exhausting my options, I’ve had to face the truth: nothing is going to stop my hair from falling. My father and brother have varying degrees of hair loss and my mother always had fine hair. My maternal aunt had very little hair on the top of her head, classic female pattern baldness.

I’ve never been thrilled with my appearance, but my hair was the one thing I was frequently complimented on. It was an integral part of my identity. When my hair began to shed, my already fragile self-esteem broke apart. I felt ugly, ashamed.

Watching my hair abandon me put me in a dark place. I went to therapy for a year and began taking antidepressants. I was in crisis. Those around me, even though they were there for me, didn’t quite understand why this was affecting me so brutally. I’d sob in my husband’s arms and talk about my hair constantly and obsessively.

My hair was the last thing I’d think about before I went to sleep. And it was the first thing on my mind when I woke up.

For a long time, my sanity was held together by a group of strangers, women across the country and around the world who, like me, are struggling to conceal their hair loss and handle the deep emotional toll it takes.

We met on the Women’s Hair Loss Project, an online support network where we traded information about treatment options, coping mechanisms, hair pieces, the numbers of hairs that fall out (yes, some of us count) and where we lauded considerate doctors and condemned dismissive ones.

Our stories had commonalities: Losing our hair made us feel unattractive, unworthy, less womanly. It robbed us of joy. We withdrew. “I want to die,” one woman wrote. In public, we studied other women, envious of the hair that they take for granted.

I had that hair once. I marvel at old photos. At the time, I didn’t realize or appreciate how much hair I actually had.

I do what I can to hide what is happening. I had my hair cut shorter to make it appear thicker. I part it a certain way. My hairdresser styles my hair frequently, blowing it out with a big brush. I am beyond grateful to her.

Still, I worry about others noticing my hair loss, about what my head will look like tomorrow, next week, next year. When I commit to a social engagement months away, one of the first things I think about is what my hair will look like by then.

For a long time, I’ve kept my secret close to me. But it’s been exhausting. I may not be at the point of my hair loss being that noticeable, but I know one day it will be. What then? I am afraid it will send me back into that dark place.

For women with genetic hair loss, the options are limited. We can use Rogaine (which works on some people but only for as long as it is applied), take medications that will suppress our levels of testosterone and increase our levels of estrogen, or look for something cosmetic like a hair piece. We are desperate for a solution.

I’ve lost faith in the medical establishment. I’ve been dismissed by cavalier doctors who undoubtedly looked at my head of hair and thought I was crazy. Everyone loses hair, they said. That’s true. But for most people, that hair grows back. I knew all along that my situation was different; my follicles were dead. I just wish I hadn’t been right.

I’m grateful I don’t have cancer or some other life-threatening illness. Yet this has cut me to the core. My 7-year-old daughter knows not to touch Mommy’s “delicate” hair and asks why I frequently wear baseball caps.

At the grocery store, at church, at the mall, I notice other women with genetic hair loss. We are a sorority of suffering sisters.

My hair is still falling out. In fact, lately it seems to have increased. It still makes me sad, but I know I have done everything in my power to remedy it. It’s time to stop fighting and to accept the cards I have been dealt.

I know I’m making progress. I have transitioned from hysteria to detachment. I no longer cry about my hair loss. I am loath to give this any more power. This is part of who I am. I shouldn’t be ashamed, but somehow what is happening makes me feel less than the person I used to be.

I am more than my hair. At least that’s what I constantly try to tell myself.