Topical steroid withdrawal has left me in constant pain, so I’m calling on dermatologists to stop prescribing them so recklessly

When I’ve got a bad flare-up, I’ll wear compression bandages – or compression arthritis gloves – and that helps with the inflammation and itching. If you can’t see it, it doesn’t itch as much for some reason! The only time I’m not in pain is when I’m in the bath, so I could spend three hours in there – I can’t have them hot so I fill them with lukewarm water, dead sea salts, castor oil, sometimes emollient, and apple cider vinegar. 

When I get out of the bath, I’ve got about 30 seconds before my skin dries out to get my moisturiser on. It helps to apply it when my skin is still wet – to help lock in the moisture. I’ll usually apply Aveeno, which is the best one I’ve found. The thing is, what works for me, won’t necessarily work for someone else with topical steroid withdrawal because any allergies that you have are heightened because you’re not able to produce your cortisol. Some days, I’ll apply cream and feel fine. The next day I might put it on and have an allergic reaction. 

I’ve just been able to start showering every day again. Warm water – when you’re not in the bath – can feel like burning acid: getting in the shower is possibly the most painful thing you can do. 

It’s also important for me to be dust-free. A lot of the time during flare-ups, you’re shedding so much skin, that dust mites are really attracted to you, so you have to make sure you’re hoovering your sheets every day, changing sheets once or twice a week, and hoovering your room every day. 

Obviously, when you’re in a lot of pain trying to keep on top of that is a nightmare. But that’s the reality of it all. You have no choice but to practise self-care. Even if you’re feeling so depressed and down if you don’t look after yourself or put your creams on, then you’ll just get worse. You have to look after yourself – even when you feel like you can’t get out of bed.

When I was in my second major flare-up. I created a TikTok video explaining what I was going through, which got over three million views. 

I’ve had so many amazing messages from people who are going through the same thing or have really bad acne, and seeing me talk about my condition so openly has really helped them. Some people have even created their own TikTok accounts to document their own journeys because of what I’m doing. 

It’s just so amazing that it kind of distracts me from feeling so sad all the time about my skin – I know that I’m helping other people by normalising ‘bad’ skin and making people feel less self-conscious about it. 

I do sometimes feel quite overwhelmed by the attention. But then I remember that the reason people follow me in the first place is that I don’t care about what I post – no matter what I look like, I just post it. So I have to remind myself that it’s fine, I’ve not had any negative comments – not that I’ve seen anyway. 

I want to continue raising awareness of topical steroid withdrawal. I think it’s especially important that doctors stop prescribing steroids so quickly and try to get to the root cause of patients’ skin problems instead. 

As well as raising awareness of topical steroid withdrawal, I’m doing my best to stay optimistic about my skin. Keeping positive is really important, as I know that when I’m better – hopefully as soon as possible – I’ll be able to fully enjoy my life again. 

Eve is encouraging people to sign a petition, which will lobby the government to fund research into topical steroid withdrawal. You can sign here. 

If you are concerned about topical steroid withdrawal, it’s always recommended to book an appointment with your GP to discuss diagnosis and treatment. You can find your local GP here. You can also find more support at www.itsan.org.

As told to Glamour UK’s Lucy Morgan, who you can follow on Instagram @lucyalexxandra.