Living With Topical Steroid Withdrawal: “TSW made my skin feel so far from myself. I felt ugly. Then my perspective changed”

And while the juggernaut power of social media has pushed the condition increasingly into the light, not all derms and doctors are on the same wavelength. A questionnaire distributed to UK-based dermatology consultants, registrars and fellows found that “34% considered TSW to be a distinct clinical entity” (or accepted skin condition) – only 17.5% did not, while a majority of 48.5% were “unsure”. Only “a minority of dermatologists believe their patients with TSW are receiving adequate care,” the questionnaire found, so “further research is essential,” says the BJD. “Understandably, because they’re the ones that caused it. Why would they put their hands up and say: ‘Yeah, we fucked up,’” says Aby.

Aby still plans to cut her usage entirely at some stage, but she can’t until September as she’s supporting Coldplay for four nights at the end of August. “That would be the biggest gig I’ve ever done,” she beams, but she admits it’s bittersweet. “After that, I’ll be going through it.”

Withdrawal can be brutal. “My mum is probably going to have to nurse me,” Aby reveals. “You need someone to make you food or to take your bed sheets and shake them off because you’re shedding so much, or you can’t bend your limbs,” she says. “And I’m trying to make sure I’m in a good position financially before then, in case I can’t work.” It’s a difficult journey to come to terms with. “I have a career and I want it to take off. This is such an essential time for me to be active, do content, make music.”

Living in limbo is debilitating in itself. “I don’t socialise as much as I would love to,” Aby confides. “I’m home a lot. I suffer with a lot of physical anxiety. When I go out, I have a window of about four hours – two, if I’m having a bad day – before I need to get home and have a bath because the hot water stimulates my nerves and helps with the itch.

“When I’m out in public, I have to ‘mask’ because it’s not socially acceptable to be outside and scratching,” she says, “so I hold off until I get home, and by that time, it’s very intense. I also have a big problem with germs because I catch skin infections so easily – to the point where I won’t touch door handles, or shake people’s hands. I’m even worried about touching my kettle after my sister has touched it, because what if she didn’t sanitise her hands first? It’s actually exhausting.

“Obviously as a musician, I have to go out and do gigs and stuff, and I love all of that. But when I tell you, it affects every moment of every day. It really affects your life,” Aby says wiping away tears. “Sorry,” she whispers. “I told myself I wouldn’t get upset, but it’s hard to talk about.”

@abycoulibaly / Instagram


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