Life’s an itch: one eczema sufferer on why she’s ditching topical steroids

To steal a line from the well-known rhyme, when my skin is good, it’s very very good; when it’s bad, it’s truly horrid. I’m lucky in that when people meet me, their first reaction when I say I have sensitive skin  is ‘But your skin looks great!’ as if being sensitive means I should be covered in spots or red-raw from scratching.

These days there are far more of the good, thanks to my well-practised patch testing routine  for new products and my ever-increasing knowledge of what to look for in an INCI list, and so most of the time to look at me you wouldn’t know that my skin isn’t, for want of a better word, ‘normal’; and yet meet me on the day of a reaction or stress-related rash and it becomes all too clear. I never take the better days for granted because I have to stay vigilant (last week I suddenly developed an itchy, ugly rash on my hand - turns out my skin didn’t like a lipstick I was swatching earlier that day. FFS) and because I know what it is to feel like your skin is crawling, sometimes for weeks on end, and would do anything to avoid it.

So when I first met Zainab Danjuma, a vlogger with severe eczema , at an event earlier this year I could empathise - and yet it made me realise just how hard it can be if your skin affliction is far more constant and visible; suddenly my own sensitive skin problems paled in comparison. After hearing how 29-year-old Zainab had been dealing with eczema her whole life, I headed to YouTube to watch her videos about the condition and was inspired by how open and emotional she was; you can see from her comments that living with this kind of eczema day in, day out is all too common, and I was fascinated by her recent decision to begin topical steroid withdrawal after years of relying on them to manage and control her skin.

If you suffer with eczema or have ever felt your confidence knocked by another skin condition, I urge you to watch - Zainab is honest, relatable and a breath of fresh, unfiltered air in a sea of flawless-looking beauty vloggers who produce product reviews out of a love for the topic, rather than a need for a solution to their problematic skin. Both deserve an audience, but with so many of us sensitive types going through the same things, there’s something about seeing real life coverage of skin issues that makes you feel less alone on those bad days (which is why My Pale Skin  and Talonted Lex  have captivated their audiences for acne and rosacea respectively).

I predict a YouTube star in the making, but before you click off to view her channel for yourself, I caught up with Zainab to find out which products she swears by during a flare, why she’s given up topical steroids and her advice for anyone who decides to do the same…

How long have you had eczema?

I've had it my whole life. My mum took me to the doctors when I was about six months old because she was concerned about how dry and patchy my skin was.

When did you start your YouTube channel?

I started my channel on the 22nd May 2017, and my first video was to celebrate National Curly Hair day. The video showed my journey with my hair because for many years I used to straighten it so much, I had completely ruined my curl pattern. When I made the video I was about three years into my natural hair journey.

Even though my channel started with a lot of hair videos, I knew at some point I was going to make a video about my eczema - how could I not! It took up so much of my life. I made a video about allergies that July, followed by my eczema video, uploaded in September 2017. Since then, my channel has been mostly focused on skin.

I have perfectly normal skin on about 80% of my body... just waiting for the other 20% to catch up!

How does your skin feel most of the time?

Itchy! I don't think there is a single moment where I am completely itch free. My itching is quite localised to my arms and neck now, so I can't really complain too much. I do suffer from dryness too but again, it’s very localised. I have perfectly normal skin on about 80% of my body... just waiting for the other 20% to catch up!

What usually causes flare-ups in your eczema?

Foods I'm allergic to and sweat. I can also say stress too, I find that when I'm stressed or upset I tend to scratch quite viciously.

How do your food allergies affect your skin?

I suffer from Oral Allergy Syndrome so a lot of food I'm allergic to, I immediately react when they touch my lips or enter my mouth. It’s mostly raw fruits like bananas, apples or cherries that set me off. I get a tingling or throbbing sensation in my lips and gums and my throat feels tickly. Peanuts give me a really strong reaction (not lethal but extremely uncomfortable) and after the tingling in the mouth, my lips swell up and my whole body gets covered in a bumpy red rash. It goes away after about four hours, but my skin can appear irritated for a couple of days after.

How does the weather affect your skin?

I will always prefer the cold because sweating is a major trigger for me. Cold weather makes my skin dry, but I can combat that with cream. Sweating is mostly unavoidable. It collects under my chin, between my thighs and the folds of my arms and knees. If my skin is already broken, it stings as well. Sweating tends to make me itch, and since the skin is wet, I can do more damage to myself by scratching. So there’s a cycle because once I scratch too much, the stinging starts!

I stopped my creams cold turkey. Within three days my whole neck had swollen up, patches on my face became redder and by the end of the week my skin was shedding

Why did you decide to begin topical steroid withdrawal?

December 2017

I have been using topical steroids pretty much my whole life. I started at 6 months old and stopped November 6th 2017 which makes it exactly 28 years - which is far too long to be on them.

I always had a tube of steroid cream in my house and a small travel pot that I kept in my makeup bag, and the usual routine would be:
- a rash would pop up
- apply a tiny bit of steroid (I would use the tip of my pinky nail to measure it out) once a day for maybe two or three days
- rash would disappear, and I would stop applying the cream... until the next rash appeared.

I noticed that over the years the rashes would last longer and the time in between the next rash appearing would be shorter. All through 2017, the skin on my neck was just constantly inflamed and I started developing red rashes between my eyebrows and on my cheeks. I'd never had eczema on my face before. I also noticed that sometimes, the cream did absolutely nothing except make me itch more!

After making my eczema video for YouTube, I received a comment from a subscriber asking me if I heard about TSW (Topical Steroid Withdrawal). I googled it and everything just seemed to click. My skin was in this constant state of inflammation BECAUSE of my creams. Anytime I stopped the creams, my skin would just rebound because it was addicted to the medication. Over the years, doctors kept upping the strength of my creams. In the end, I was using Betnovate and Elocon which are listed as potent. My options were to up the strength of my creams once again to help clear the rashes - but know that somewhere down the line they too would stop working. Or, I could stop using them and go through withdrawal. I had never been without the cream for longer than a few days, a week a most, so I knew it would be hard.

Neck, 20th November 2017

Bruised face, 4th January 2018

I stopped my creams cold turkey. Within three days my whole neck had swollen up, patches on my face became redder and by the end of the week my skin was shedding, splitting open between my brows and weeping. My skin kept going downhill for about five months, then somehow at the start of May, my skin just calmed and it gradually got better. First, the shedding became less and less, and the redness began to become less noticeable. I'm nine months in now and my face is doing 100 times better than it ever had while I was on the steroids. It's soft, supple and dewy even without moisturiser!

I'm still in awe of the whole transformation. I'm having a tiny setback on my arms and neck because of the heatwave, but it's nothing compared to what I've been through so I just take it in my stride. Going through this withdrawal has really changed my life for the better.

June 2018

What’s been the hardest thing about TSW?

The hardest thing was looking in the mirror and not seeing myself. For months I felt like a monster. During the worst months, I looked bruised all over my face - this is typical of Red Skin Syndrome [where skin gets worse before it gets better - common with TSW]. My skin became incredibly dry too and it really aged me. I would smile and my skin would pull, causing deep lines around my mouth and eyes. I was shedding constantly, everyday I was losing skin on my face.

For about six months I couldn't wear makeup because it just looked terrible on my shedding skin, and it was always quite painful taking it off (water really stung my face) so I just gave up. It was really nerve wracking, turning up to work one day with no makeup and showing my colleagues my bruised-looking face. I felt so self conscious, I noticed I walked around looking at the floor and didn't want to make eye contact with anyone. I stopped going out unless I really had to and even then I would go home at the earliest chance.

Dry face, January 2018

I cried a lot during withdrawal thinking that this was my face now, and I would never be myself again. I lost a lot of my confidence and became really reserved.

It's really humbling looking back and knowing I've come so far. And somehow the six months without makeup was quite freeing and almost a confidence booster, especially towards the end when my skin became better - I felt i didn't even need the makeup.

What do you currently use on your skin?

I still use Aquaphor Healing Ointment , £18.70 which was my holy grail during my withdrawal! I use it on my lips daily. I can't use it on my face because it’s quite thick and it’s way too hot right now, so my face moisturiser is Palmer’s Cocoa Butter , £7.99.  I also use that on my body along with Aveeno Skin Relief Lotion , £4.49.

I've recently started using The Ordinary's Hyaluronic Acid 2% + B5,  £5.90, after I've washed my face to help keep my face moisturised for longer.

What are your best products for when you’re having a flare?

I will always run to Aquaphor Healing Ointment, especially if my skin gets dry.

Is there anything you indulge in when your skin is feeling better that you would normally avoid?

The gym! I avoid the gym when I'm rashy because the sweat makes me itch and I hate doing more damage to my skin. Food-wise, there's nothing I really avoid. I eat whatever I want (yes, I'm a food junkie) just avoiding things I know I'm allergic to like raw apples and peanuts.

Your makeup always looks flawless! What’s in your makeup bag?

My favourite foundation is Nars Sheer Glow Foundation , £33 in Macoa.

I've been using it for about three years. My under-eye concealer is MAC Studio Finish in NC42 or NC35 , £16.50 and I set that with Sacha Buttercup Powder , £19.99. Anastasia Beverly Hills DipBrow Pomade in Chocolate , £19 is my newest addition to the makeup bag. I contour with MAC Mineralize SkinFinish in Dark Deep , £25.50.

My everyday look is finished with MAC's Cork lip liner , £14, and Colourpop liquid lipstick  in Echo Park or Screenshot, £9. And of course, some false lashes, like Ardell demi wispies , £5.49.

You’ve talked a lot about the psychological side of having eczema. What do you do to deal with this and is there anything that people could say or do to make it easier?

I'm still trying to work on this myself. I find that I'm very good at bottling things up, and sometimes I just have a little cry. That's my release. I also use my YouTube channel to voice my fears and worries.

I absolutely HATE when people tell me to stop scratching because they don't understand the feeling, I guess if people didn't say that I'd be a happier bunny!

Any experts, bloggers or resources you recommend for people going through the same thing?

I urge anyone going through TSW to go on Instagram and just search for accounts with "TSW" in the name. Follow, look at people's photos and talk! Message people and comment because everyone is in this together and we are all so willing to help and give advice. Join Facebook groups, the largest one is called " Topical Steroid Withdrawal - Red Skin Syndrome Support Group " it has over 9K members. These groups are like family, everyone is there to support and no question is too crazy for us, and we'll always lend an ear if you just want to rant and moan about your skin. There's also ITSAN.org  (International Topical Steroid Addiction Network).

I don't think I would have stayed on track without Instagram and the Facebook groups. I've never known such an amazing group of people.

What are your top tips for anyone about to start TSW?

Don't compare your journey to anyone else's - everyone's healing is different.

Also, the withdrawal process is NOT linear. It’s not a continuous climb to 100% healing, it’s like a rollercoaster so if you're having a really bad week with your skin, the next week could be incredibly good! Then the following week it could be worse than before. So just take each day as it comes.

Make yourself as comfortable as possible. Do whatever makes you comfortable - if that means bathing for hours on end because it soothes your skin or walking around the house naked because clothes are too uncomfortable, just do it.

And last of all... remember you are not alone so don't be afraid to ask for help, there are thousands of us out there, we're all in this together.

Watch Zainab’s channel on YouTube  here   or follow her TSW story on  Instagram

Please consult your doctor or dermatologist before changing or stopping your prescribed skincare