I thought I was fine with being bald. But the chance of a cure has stirred up all sorts of feelings | Emma Beddington

1 month ago 4

My hair looks incredible at the moment. I know because people keep telling me – in bakeries, cafes and when I was getting my tattooed eyebrows touched up yesterday.

What to say? “Thanks!” feels conceited. “My hairdresser’s a genius,” is (part of) the truth. I often narcissistically worry what would happen if he were to slip away before me; how wrong would it be to bring him five or six wigs to cut on his deathbed? In a similar vein, I was thrilled yesterday, when S, who has done my brows for decades, told me her daughter may be going into the family business – succession secured!

The honest – if awkward – answer, of course, is: “It’s not mine.” I have alopecia; I have no idea whose hair I’m wearing. For someone who frets about where my avocados come from, I’m shamefully incurious about how my hair is sourced (“the general public of the world”, my wig supplier’s site says, vaguely).

It’s definitely lusher and more lustrous than the hair I saw in a recent New York magazine article. That was barely fluff, a halo of fine baby hairs catching the light, but it was the author’s own. Lindsey Sullivan also has alopecia; she had been taking Pfizer’s new treatment, Litfulo (ritlecitinib), for a few months when the picture was taken. “I’ve never had eyebrow hair before and am now contemplating brow products,” she says in the piece. Her Instagram, which I instantly sought out, shows her, a year into treatment, with a decent amount of real hair on her head. Zooming in, I spotted she has eyelashes too. Eyelashes! The dream.

It’s a literal dream I have sometimes. I wake up weirdly bereft, my fingertips tingling with the phantom sensation of running my hand over my head and feeling hair, something that hasn’t happened since it all fell out in 1995 and I gave up the unpleasant, ineffective steroids I was prescribed a year later.

But now there may be an effective treatment. It’s no magic bullet but it’s the best chance yet. In trials, “nearly 25%” of people saw 80% or above scalp coverage (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 on the NHS will be tough in the short term. Dermatology referrals are inconsistent and waiting lists are long. Hair loss is understandably way down the bottom of healthcare priorities in 2024, and a private month’s supply is nearly £1,000, so 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’ve had alopecia for so long. Still, it’s a “maybe”, after 30 years of “no”– a confusing possibility I’m struggling to navigate.

For Sullivan, growing more hair has been a conflicted experience. Her identity was wrapped up in her hair loss (which started when she was a toddler), her decade of 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 “a betrayal”.

I wouldn’t be conflicted. If I could, I’d take Litfulo in a flash; I’d do it for the eyelashes alone. It feels weird to conduct that thought experiment and realise my answer is so unequivocal, like an expression of unhappiness with my hairless life when I’m not, I think, unhappy. I never did the active work of getting to the place of acceptance that Sullivan describes, but the passage of time did its job, and being bald hasn’t felt like a big deal for ages. Now, though, I’m thinking about it all the time, wondering about the alternative. As (I imagine) with Ozempic, it’s harder to feel you’re perfect just the way you are when an effective pharmaceutical alternative manifests.

Living at a time of medical wonders is magical but confusing. This homeopathic dose of hope makes me feel vulnerable, as if I’m being set up for one of those post-dream wake-ups. Because maybe – probably? – it won’t happen. I suppose I need to somehow convince myself it doesn’t matter either way. After all, my hair looks great – everyone says so.