My alopecia story
I’m 29 and at the hair salon. I’m facing the mirror, hair newly washed, restful with my hands beneath the cape. The stylist tilts my head forward and makes a sharp part down the middle of my scalp. She pauses and says, “Do you know you have a bald spot at the nape of your neck?”
I feel this painful constriction in my chest. “No-o-o-o. How big is it?”
“Maybe the size of a quarter. You might want to see a dermatologist about it.”
She sounds so unconcerned. I am very concerned, no longer happy getting my hair cut and blow-dried. I just want to get home, use a hand mirror and the bathroom mirror, and see for myself. Because I know this could be a very not-good thing.
A couple years earlier, my mother calls and says, “Cathy Ann, I’m losing my hair.”
“What do you mean, you’re losing your hair?”
“I was in the shower and my hair started falling out when I ran my hands through it. Lots of hair. In bunches.”
“Did you go to the doctor?”
“I went to see Dr. Noden …”
Oh, geez, I think, Dr. Noden was old when he delivered my mother.
“… and he said it was nerves. He gave me valium. But I can’t take them. I took one and it made me goofy.”
“He thinks it’s nerves? You want me to look it up?”
“I’ll call you right back.” This was in the days before Google, before the internet, even. 1976 or so. The only medical book I have on my shelves is Our Bodies, Ourselves, which does have a short mention of hair loss. Also known as alopecia areata, if it comes out in patches, in which case it often grows back. Alopecia totalis or universalis if all the body hair falls out. Causes unknown. Thought to be linked to stress or the immune system. I think, If all the body hair falls out?
I call my mother back and tell her this. “Well,” she says, “it’s still falling out.” She doesn’t cry, at least not to me. My mother was a stoic. She did have alopecia totalis. She lost her eyebrows and eyelashes. Her wigs were a little too dark, but she wouldn’t let any of us go with her to pick them out. If you looked at her face it looked naked and pale, but her eyes were always what you paid attention to anyway. Deep-set, dark brown eyes. Like mine.
So I know what could be in store for me.
I begin going to dermatologists. First I go to a clinic because I don’t have health insurance or money. The doctor has me take my clothes off and put on a paper robe, and gives me a breast exam. What, I wonder, does this have to do with my hair?” Finally I say, “What are you doing?” At which point he flees, and so do I.
I go to a for-real dermatologist who examines my scalp, explains that the kind of alopecia I have, which starts at the nape, is the most likely to consume my whole scalp and never come back, but not likely to lead to alopecia totalis. He prescribes a cream that is the precursor to Rogaine. When that does nothing, he gives me steroid shots in the scalp every couple weeks, which hurt.
This produces a little hair, but when he says, “You know, the downside of this treatment is that as soon as we stop the shots, your hair will fall out again. And these are steroids, which you really don’t want a lot of in your body.” As far as treatments go, that is it.
I find the World Wide Web, as we called it back in the day, and through it the National Alopecia Areata Foundation, send them a donation to support research, and in return they send me a monthly newsletter. It is disturbing. The research is inconclusive, origin unknown, perhaps an autoimmune disorder. The pictures of bald little kids are particularly upsetting.
I show my soon-to-be-husband this bald spot, he’s met my mother, and he says something like, “Oh. Guess we’ll just have to see what happens.” And we get married, my hair still long enough to cover any baldness. But it creeps inexorably up my scalp and above my ears until it gets to the point where the slightest breeze that lifts my hair makes it visible. I buy a wig at a store in Rockville for $145. I later find the same wig at Capital Plaza in Prince George’s for $49.99.
I feel so bereft. When I call and tell my mother, she cries out, “Oh, no!” in a voice full of guilt. I wish I could have gotten away with not telling her.
Then I proceed to cry for two solid years. I even find a kind of peer counseling where you get together with another person, or over the phone, and just cry. Cry for a solid 20 minutes while someone listens, and then let them cry for 20 minutes while I listen. This has the effect of crying me out. Plus, I have a life to live. A husband, a home, two little girls. I become resigned to wearing wigs. I stop swimming. I avoid going out in the summertime, joking it’s just too hot with my fur hat on. I wear babushkas when riding roller coasters.
I give up my subscription to the alopecia areata newsletter, stop talking to doctors about it, and go on about my life.
Then, when I’m in my early 40s, my in-laws start seeing a new dermatologist at Johns Hopkins. They really like her, and they tell her about my hair. She suggests I come and see her.
I drive up to north Baltimore and visit Dr. W. She has beautiful, thick, curly, red hair and looks about half my age. I decide to like her anyway, because she’s very nice and professional. She looks at my scalp and says, “I’d like to try something.”
What she wants to do is put a small concentration of poison ivy (urushiol) on my scalp to see if the attention of my immune system will be pulled away from the hair follicles and onto the skin, allowing the follicles to produce hair. This makes sense to me. She applies the solution with a cotton ball, and away I go.
After many weeks of going back for this treatment, damn if my hair isn’t growing! And the poison ivy is so diluted it doesn’t even itch. I feel hopeful. I’m excited. My hair’s growing back, thin and streaked with grey, but, hey, why shouldn’t it be?
I keep going for treatments every few weeks. My hair is thickening. I can’t believe it.
Then one day, after the drive to Hopkins and getting the usual cotton-ball/poison ivy treatment, I know before I’ve gotten back to my car that something is terribly wrong. My scalp itches. No, it burns. I should turn around and go right back into the doctor’s office, but I don’t. I drive home. It gets worse. By the time I reach the Washington beltway my head burns so badly that I’m sobbing with pain. I pull off into College Park where my friends Jan and Russ live. I bang on their door, tears streaming.
“My God, what’s wrong?”
“I need a shower!”
I push past Janis and head for her bathroom.
“Let me get you a towel! Ignore the kitty litter box! What’s wrong?”
I get in the shower in my clothes. I use her shampoo. I keep rinsing. I stand in her shower for about 15 minutes, crying, letting the cool water cool my head. Finally it seems to feel better; I’m not crying as much. Jan is standing outside the bathroom door, saying, “Are you alright?”
“Can I borrow some clothes? Sweat pants, anything?”
She hands them in to me. I say I’ll be right out, peel off my clothes, dry off, step into hers. I look in the mirror. My head is the red of a tomato.
I say, “I’m coming out. I don’t have my wig on.”
“Who cares?” she says, and she wraps me in her arms when I come out, and I start crying all over again.
Finally, I call Dr. W.’s office. They don’t want to interrupt her. I say it’s an emergency. Finally she comes on and I tell her what happened. There’s a long silence. Long. Then she says, “I’ll be right back.”
In a few minutes she comes back and says, “I am so sorry. I didn’t dilute the treatment.”
I think that’s the first and only time I’ve heard a doctor admit a mistake. I say, “What do I do?”
“Ice it. Wrap your head in cold, wet towels. Do that till it feels better. Don’t come back for six weeks. But pay attention to your body. Pay close attention to how you feel.”
I do this. When I go back to her six weeks later, she examines my head, which has gone back to its normal paleness, and she says, “How do you feel?” Not, how does your scalp feel, how do you feel?
I say, “Well, I don’t know. I feel … different. There’s something going on, but I don’t know what. I don’t feel sick. I just don’t feel right.”
She asks more questions, looks at the skin on my arms and legs. She says, “You’re having a systemic reaction to the poison ivy. We can’t do this anymore. We have to stop.”
So we stop. And the hair falls out.
This is nearly 20 years ago. I’ve decided to believe in miracles, though, so I’m resubscribing to the alopecia newsletter, just to see if there is any identified cure, which I doubt, but I guess I can at least support the research. I am thinking of giving up wheat and sugar, which a nutritionist suggested when my hair first started falling out, advice I ignored.
I order wigs online. I’ve been a blond, many different shades of brunette. I can just bear sweating under my wig during Jazzercise or walks in the summertime. I can’t bear the idea of shaving my head or going wigless. Vanity, thy name is woman. Guys can get away with baldness; bald women, unless they have beautiful cheekbones, which I don’t, might get away with it. Oh, hell, I could get away with it. But I wouldn’t be happy being what I think of as weird-looking. I’m weird-acting as it is.
I’m glad my husband loves me for who I am, because I don’t wear the wig around the house, or to bed. If I can’t be myself in my own home, I said a long time ago, where can I be myself?
And I have to say, whenever I go to a doctor and have to check those have-you-ever-had boxes (tuberculosis, a heart condition, lymphoma, etc., etc.), and I never have to check any of them off, I think, I am so lucky. On a scale of one to 10, alopecia is, like, maybe a 2.
Oh, and alopecia is not hereditary. It often appears in a family, among cousins, say, but supposedly it’s just a fluke that my mother got alopecia totalis and I got alopecia areata. Which is a great relief to my daughters.
Lingering side effects: I am very allergic to poison ivy; also, weird doctors who think they can get away with breast exams for totally unrelated infirmities. I mean, what’s up with that?
If you have alopecia and would like to share your story, I invite you to do so.