Topical steroid withdrawal (TSW) is a condition that can occur after using steroid creams that are often prescribed for eczema. It can cause immense pain, itching and oozing sores, and while there are many stories of women struggling with the condition, there’s still no agreed treatment for it.

Zainab Danjuma, 34, is a London-based blogger who talks about the reality of this issue. For our Skin Stories series, we spoke with her about her experience of eczema, topical steroid withdrawal and sharing her skin online. 

Hey, Zainab. How does your skin story begin?

From what my mum told me, she started noticing dry red patches on my skin when I was a baby. She took me to the doctor when I was about six months old, and I was prescribed steroids to treat my eczema. I probably didn’t notice that my skin was different from other kids’ until I was in primary school. It was then that other kids made comments and it made me feel self-conscious.

Did you face judgment for your skin? How did that affect you?

I’ve been lucky to never have been bullied about my skin, but it’s people’s passing comments that seem to stick with me. A schoolmate mentioned that I have “dry knuckles”, which made me very conscious of my hands when I was younger, to the point where I was always hiding them and rarely wanted to interact with other kids. My dad’s comment about me having “Crocodile Dundee skin” makes me feel sad for my younger self too.

I’ve seen random comments on my YouTube channel commenting on how my neck doesn’t match my face, but these don’t bother me so much. I just think my videos aren’t meant for those people to see; there’s still not enough representation for skin conditions like mine.

What treatment did you try to pursue for your eczema?

I’ve always just wanted clear skin. I was never presented with many options other than steroids, so for the majority of my life, I depended on them… until they stopped working, I’ve also tried traditional Chinese medicine, which was very expensive for my mum, so although I didn’t realise it at the time, looking back I feel as though my condition was a huge burden for her, emotionally and financially. There’s a lot of guilt that comes with having a condition where someone else has to provide care for you – like you are making the lives of everyone around you harder even though it’s something out of your control.

Let’s talk about steroids. Did they help at first? 

I used steroid creams for 28 years. I stopped using them in 2017, when a comment on my channel led me to research topical steroid withdrawal. Everything just clicked. 

Although the steroids did help in my younger years, the eczema kept coming back. I’d use more and more creams that increased in strength but it kept coming back, appearing in more areas of my body. By my mid-20s, I was experiencing patches on my face and neck, which was not where my original eczema was. 

Eventually, I was stuck in a cycle where I couldn’t go 24 hours without applying creams to my body. If I missed an application my skin would burn, go red and just feel so uncomfortable. It was not normal for my skin to feel like this – this is what is recognised as topical steroid addiction.

So then you stopped using steroids – what happened then?

I stopped using the creams cold turkey on 5 November 2017 and went into withdrawal. It was hell. My skin went bright red, it oozed, it shed and hyperpigmentation took over my face and neck. I lost weight rapidly and became quite withdrawn, but I knew it was temporary and kept pushing through. It took roughly six months before I started to look like myself again.

And you shared images of this process online. Why was that so important for you to do?

I share my experience because it gives me a sense of release. Talking about my condition and how it makes me feel is something I couldn’t do when I was younger, so now, as an adult, I just make videos to express how I’m feeling: the resentment, anger, frustration, but also hope. It’s been amazing to hear that people see these videos and can relate to what I’m saying. It makes them feel heard and less alone and that’s something I wish I had when I was a teenager.

Documenting my journey also lets me see how far I’ve come and that there is still life while going through this condition. It’s also not common to see eczema on darker skin tones, so I feel I give a more realistic view of eczema and hyperpigmentation compared to adverts on TV.

What misconceptions do people have about your skin? What do they get wrong?

When people see my skin they assume that if I just moisturised the condition would go away…. like obviously if that were the case, nobody would have a skin condition! At times, I try to explain that it was my medication that caused me to experience such intense flares, but it goes over people’s heads. A lot of people have messaged me to say things like, “I tried this cream and my eczema went away”, not realising I have tried many different creams over many years. Everyone is different but coming off the medication was my last resort.

Doctors also seem to think this condition is in my head, and they tell me TSA isn’t possible, although recently topical steroid withdrawal has been recognised by the UK government. 

During my pregnancy, I had to have steroid shots to help mature my daughter’s lungs in case she was born early. Of course, I wanted to do what was best for her, but I mentioned to my consulting nurse that I had a bad reaction to steroids, and she laughed, saying she’s never heard of that before. A week after taking those shots, I felt my skin start to burn and become more flaky, and I just felt completely defeated.

That’s so tough. How do you feel about your skin amid all of this? 

I’m still conflicted about my skin. I’m amazed by how much it’s healed, but I feel resentful for the time I’ve lost to this condition. I flared up very badly after my daughter was born in 2021; I technically went through withdrawal again and this time it was much worse, which I believe was down to the steroid shots I took during pregnancy. I feel that within the last two years, I’ve really lost confidence, and while I was suffering I really questioned my ability as a mum. ‘Mum guilt’ hit me hard on the days when I was in too much pain to pick up my daughter.

How do you care for your skin?

My skin routine is very simple. For me, less is more when it comes to skincare. I like to soak in a dead sea salt bath at least once a week. I make sure to exfoliate my skin regularly to keep the flaky skin away. I always use Evolve Organic Beauty’s hyaluronic serum on my face after my bath/shower, followed by Palmer’s Cocoa Butter. I’ve used this since my teens. I use Balmonds cream on my upper body. 

That’s all I really use day to day. Once I find something that works, I tend to stick to it rather than change it and risk a reaction. It’s pretty boring, but I don’t have to stress about my skin like I used to.

It may sound terribly cliché, but your skin does not define you. Outside of your skin, you have talents, goals, interests – don’t forget that. Don’t let eczema consume your life. Find your people who will support you and make you feel comfortable just being you, flaky skin and all. I recommend going on Instagram and following eczema warriors that look like you to see how their skin heals and changes with the condition. And lastly, find a routine that works for you. There are no rules as to what you should do for your eczema. That ‘one size fits all’ method is very outdated. Do what makes you feel comfortable and be consistent.

This article is part of Skin Freedom, a Stylist Love Women series that aims to champion the reality of women’s skin in all its glory.

Images: Zainab Danjuma