What It’s Like to Lose All Your Hair

by Alexandra M.

A few weeks after I turned 21 I noticed a small hairless patch near the top of my head. I didn’t really freak out — I’d experienced little patches like this before, at 18 and 20, and knew it was just (just!) alopecia, small patches of hair loss caused by your body’s immune system attacking the hair follicles for unexplained reasons. I simply called the dermatologist I had on hand near my college just for this purpose, made an appointment to get a certain kind of steroid shot for this purpose in the patch, and figured that was it.

Except unlike the other times, that was not it. Over the next few weeks I noticed my hair thinning all over, something that had never happened before. When I ran my hand through my hair in the shower to rinse out shampoo, I came away with small handfuls of hair. When I straightened it, the floor would be covered in strands when I was done. So I stopped washing and straightening my hair so often, thinking that would cut down the thinning until I could get home and see my regular doctor. I had very thick hair, and lots of it, so I figured I would be fine and unnoticeable. Then Halloween rolled around and my best friend came to visit for the weekend. The first thing she said to me — literally the first, before we even said “hi” or “I missed you” was, “Why didn’t you tell me your hair got so thin?”

I brushed it off and had a great weekend with her, but the second she left I bolted to my room and broke down. I called my dermatologist at home in New York, took her first available appointment later that week, and skipped my Thursday classes to make the drive down, right after the guy I was seeing ended things with me via AIM. The first thing both she — and my mother, who met me there — said to me was that I didn’t even look like myself. Apparently my alopecia areata (patchy) was turning into alopecia totalis (complete head hair loss), and she took a biopsy and suggested I look into getting a hairpiece before things got really bad.

I did not want one, because my vain, senior-in-college-just-wanting-to-love-life self thought that getting one meant accepting that I really was going to lose all my hair. But after two weeks of wearing increasingly large headbands, it became clear that being Blair Waldorf wasn’t going to cut it. I gathered up the courage to ask a few friends their opinions, and they agreed that I should do it. Before I left for the semester, I told just enough additional friends to ensure that most of my sorority house would know by the time we got back, so there would be no surprises and awkward questions. Sure enough, when I got back all my good friends told me I looked great, and all my other friends just thought I had dyed my hair, as the piece had more of a red tint than my natural hair color. Over the next few weeks my remaining hair continued to fall out to no one’s knowledge but my own, until one day I got so frustrated that I just cut off everything that remained. My hairpiece fit better after that.

Getting a hairpiece is, thankfully, not like the episode of Sex and the City when Samantha gets a wig. You go for multiple fittings to ensure that it will fit you exactly, you pick out exactly the thickness, length, and color of the hair you want, you pick out where the flesh-colored part will go, and you get it cut and shaped to fit you. Guess how much this costs. Nope, more. Nope, more than that. A good hairpiece — one that is made to fit you, one that will trick even people who know it’s fake into thinking it’s real — costs $4,000. I’m sure you can get one for less, but as my mom said when we went for my first consultation, “If we’re going to do this, we’re going to do this right.” And keep in mind, $4,000 is just the original cost. Because you’re getting real hair, it bleaches out like normal hair and needs coloring, which costs money. Because it’s sewn into a base and not growing out of your head, when it falls out it needs replacing, which costs a lot more money. And even the best-quality hairpieces wear out and need replacing every two years or so, depending on how well you take care of it. Insurance won’t cover much of the cost, because they don’t see the difference between a custom piece and buying one in the store for a few hundred dollars. I’m making an appointment this week for a fitting for my third piece, at which point I will have spent more than $10,000 — TEN THOUSAND DOLLARS — on hair. And by I, I mean my parents, because I’m lucky if I have more than $20 in my bank account at the end of the month. For this, I will be forever grateful. I realize it would be a lot cheaper to just go bald, and I know women who do and they look great, but I just don’t have that kind of confidence. Plus, I like to play with my hair when I’m bored.

My alopecia is not a secret, but it is something I tell people on a case-by-case basis. It’s just something I don’t feel the need to tell everyone, like anyone with any medical condition. A lot of people I know, even people I’ve known for years, will probably find out for the first time when they read this. But it has made dating awkward. Since graduating college, I’ve dated or gone-on-a-number-of-dates-but-not-enough-to-be-serioused (you know what I mean) with four dudes, and told three. The first one fizzled before I could say anything. I waited a while to tell the second one, at which point he promptly got weird and stopped calling me. I waited a little less long to tell the third one, but he didn’t want a relationship anyway so that didn’t matter. I told the fourth one on our second date, because I really, really liked him, and wanted to be honest with him early to avoid getting hurt in case he freaked out, even though I already liked him so much that I’d be hurt anyway. It’s been almost a year and a half since that point, and we’re still dating. He cares more that I mispronounced Chick-Fil-A on our first date.

Like all my friends, he rarely asks about it. They all know that I’ll talk about it when I want to talk about it, and to be honest, I think sometimes they forget. But I never do. More than anything, I would love to be able to pull my hair into a high ponytail or messy bun, but hairpiece design makes that impossible (I can still pull it up for exercise or yoga, but low). I would love to run my fingers through MY hair, not across my smooth, bare scalp. I would even love to have to shave my legs more often. I would love to stop going to the dermatologist every month. My eyebrows are now thinning, so I have to get steroid shots in them every five weeks. I also have to get a general steroid shot in my butt during these visits (these steroids are supposed to help stop the immune system inflammation that blocks the hair from growing). The steroids make me feel really tense and jumpy for two days, but they’re the least sickening/annoying of all the treatments I’ve tried. Oh, and my dermatologist doesn’t take insurance, so that’s another $200 every month that I have to fight with Aetna to reimburse.

Because alopecia only affects 2 percent of the population and isn’t life threatening in any way, there aren’t any alopecia-specific treatments out there. Most of the treatments are simply other medications that were found in studies to also stimulate hair growth, like Latisse, which they just started trials on for hair loss. Most hair-loss research is directed at men, so a lot of proven treatments, like Propecia, can’t be used by women because they affect fertility. I’d like to have kids at some point down the road (far down, calm down boyfriend), so this isn’t an option (in case you were wondering, there’s an 8 percent chance of me passing this on). A lot of the treatments out there also have side effects or time constraints that make them not worth it. I’ve tried various pills that have made me feel sick all the time. I’ve gotten those steroid shots in my scalp, which are both painful and have mixed results, and if they did work well I’d have to get them every month for the rest of my life, lest I risk hair falling out again. There’s a cream for some other condition I could try, but I’d have to leave it on for an hour every single day and my scalp would turn purple. There are ultra-violet light treatments I could try, but they up your chance of skin cancer and I’d really rather not get melanoma.

In some ways, I actually think it would be harder to have alopecia and be a dude, even though the whole hair-loss industry is geared toward them (even the special tape I use to keep my hair on is called “men’s grooming tape”). Yes, no one even looks twice at a bald dude, but I can pencil in the missing patches in my eyebrows and trick you into thinking I have eyelashes with my eyeliner and no one is any the wiser, a luxury most guys don’t have (or wouldn’t attempt). I’m also grateful that I developed this at 21, because I already had a great group of friends mature enough to understand that I didn’t have some scary, contagious disease. Developing it later in life also means that I have a greater chance of getting my hair back. There’s a 50 percent chance it could just come back on its own, and I just try to think that that means that there’s a 50 percent chance that it will come back via some sort of treatment. There’s no option for me but to believe that it will come back. A few years ago my nana told me that she knew — knew — that my hair would come back, but that it would be more curly and unmanageable than it used to be. Considering she’ll be 90 this fall, I’m pretty sure she knows her shit. And in that case, bring on the humidity. I’d love to write a Hairpin piece on taming crazy Medusa hair.

Alexandra M. works on the Internets and spends most of her time thinking not about hair but about food, which she writes about on her cooking blog. All her Gmail ads are now for hair loss after e-mailing this to The Hairpin.