My hair looks fantastic right now. I know because people keep telling me – in bakeries, cafes and when I had my tattooed eyebrows done yesterday.
What to say? “Thank you!” feels conceited. “My hairdresser is a genius” is (part of) the truth. I often worry narcissistically about what would happen if he slipped away from me; How wrong would it be to give him five or six wigs to cut on his deathbed? In a similar vein, I was thrilled yesterday when S, who has been doing my eyebrows for decades, told me that her daughter might be joining the family business – succession guaranteed!
The honest – if uncomfortable – answer, of course, is: “It’s not mine.” I have alopecia; I have no idea whose hair I’m wearing. For someone who worries about where my avocados come from, I’m embarrassingly incurious about the origins of my hair (“the general public of the world,” my wig supplier’s site says vaguely).
It’s definitely more luscious and shinier than the hair I saw recently New York magazine article. That was barely a speck of fluff, a halo of fine baby hairs catching the light, but it was the author’s. Lindsey Sullivan also has alopecia; she had been taking Pfizer’s new treatment, Litfulo (ritlecitinib), for a few months when the photo was taken. “I have never had eyebrow hair and am now thinking about eyebrow products,” she says in the piece. Her Instagram, which I immediately looked for, shows her, a year after the treatment, with a fair amount of real hair on her head. When I zoomed in, I saw that she also has eyelashes. Eyelashes! The dream.
It’s a literal dream I have sometimes. I wake up strangely bereft, my fingertips tingling with the phantom sensation of running my hand over my head and feeling my hair, something that hasn’t happened since it all fell out in 1995 and I gave up the unpleasant, ineffective steroids I had been prescribed . years later.
But now there may be an effective treatment. It’s not a panacea, but it’s the best chance yet. During trials, “Almost 25%” of people saw scalp coverage of 80% or more (the percentage was higher over longer periods at higher doses).
It’s probably not imminent here. Nice approved Litfulo in March, but Alopecia UK suggests accessing it through the NHS will be difficult in the short term. Dermatological referrals are inconsistent and waiting lists are long. Hair loss is understandably at the bottom of the healthcare priority list in 2024, and is a private problem The monthly offer is almost £1,000so that’s out of the question. Costs will come down and access should improve, but even then I may not be a good candidate because I have had alopecia for so long. Still, it’s a “maybe,” after thirty years of a “no”—a confusing possibility that I’m having trouble navigating.
For Sullivan, growing more hair was a conflicting experience. Her identity was wrapped up in her hair loss (which started when she was a toddler), her decade of coming out and proud acceptance of her baldness, and her role as a support group leader and advocate for people with alopecia. Even seeking treatment, she wrote, felt like “betrayal.”
I wouldn’t have any conflict. If I could, I’d take Litfulo in a heartbeat; I would do it just for the eyelashes. It feels weird to do that thought experiment and realize that my answer is so unequivocal, like an expression of dissatisfaction with my hairless life when, I guess, I’m not unhappy. I never did the active work to get to the place of acceptance that Sullivan describes, but the passage of time has done its work and being bald hasn’t felt like a big deal in a long time. But now I think about it all the time and wonder what the alternative is. Like (I think) with Ozempic, it’s harder to feel like you’re perfect just the way you are when an effective pharmaceutical alternative shows up.
Living in an age of medical miracles is magical but confusing. This homeopathic dose of hope makes me feel vulnerable, like I’m being set up for one of those after-dream wake-ups. Because maybe – probably? – it won’t happen. I guess I have to somehow convince myself that it doesn’t matter either way. After all, my hair looks great – everyone says that.