Guest post by Holly Broome
Throughout my life I have been made to feel that eczema is just a mild skin condition that I have no right to complain about. I’ve been told more times than I can remember “don’t scratch”, almost as if I’ve caused it myself. I’d never met anyone else with eczema like mine until my early 20s. Up until then I felt very isolated and ignored, and never really took my condition seriously.
Doctors appointments about my skin would always end in a prescription for yet another topical steroid whilst being ushered out the door. No care was ever taken to explain the risks of long-term use of topical steroids. I was only ever told that they might thin my skin.
Advice was always conflicting and confusing. One time, when my face was flaring, a doctor prescribed me oral steroids and hydrocortisone (a mild topical steroid cream) and instructed me to use it on my face, “to get the redness under control”. Up until then I’d been told very clearly never to use steroids on my face.
I suffered from severe eczema as a child, which went away as I grew up, so I thought I was out of the woods. When it came back in my twenties, it came as a shock. This time I was on my own at uni, and having to navigate doctors appointments by myself.
I distinctly remember one appointment at an out of hours minor injuries unit. That week my eczema rash had spread to previously unaffected areas. Normally it would present on the insides of my elbows and the backs of my knees. However, this time it had spread all up my thighs and torso, and even up my back. It was extremely uncomfortable, to the point where it hurt to shower.
In the appointment the doctor seemed irritated. I explained to her how bad my skin felt and that it was the worst I’d experienced it as an adult. She became dismissive, stating that “I was lucky it wasn’t worse”. She said I should have seen a patient she’d had in last week with much worse eczema than me. I was horrified. I wish at the time I had had the strength to call her out for invalidating my suffering. Instead I felt powerless, guilty for even wasting her time, and most of all stunned by her lack of compassion.
I was consistently prescribed topical and oral steroids for around two years, as my skin spiralled out of control, until it came to the point where my skin was no longer responding to treatment. This is when my battle to be heard by doctors really began.
Little did I know, I was in fact no longer suffering from Atopic Dermatitis. I had developed a condition called ‘Topical Steroid Addiction’. My body had developed a dependency to the synthetic hormones I was rubbing into it. Not even once was I warned of this side effect.
In January 2018 I bought a book called The Eczema Diet by Karen Fischer in a desperate bid to improve my skin. I came across a term I had never heard before: ‘Topical Steroid Withdrawal’. I Googled it and came across shocking images of people whose skin looked like it was falling off. Their entire bodies appeared to be ravaged by peeling, oozing scabs. It was horrifying. I couldn’t believe this could be a side effect of the medication I’d used my entire life. Why had I never heard of TSW? Why hadn’t my doctors warned me?
Because, according to the medical profession, TSW doesn’t exist.
At first I was in denial that I could possibly have developed a dependency. I had been using the steroids as instructed by my doctor. I discovered other people’s stories and blogs online, documenting their journeys with TSW, and it all sounded so familiar: childhood struggles with eczema that reappeared in adulthood, only to result in TSW. I slowly started to realise this might be the problem.
I brought the issue up with my doctor at the time and they dismissed it entirely. They’d never heard of TSW, and therefore concluded it didn’t exist. I expressed my concerns that this is what I thought I had, because the steroids were no longer working for me and my eczema was spreading. They were having none of it, and just tried to prescribe me more steroids. This was incredibly disheartening and was a turning point for me. I felt that the only way I could get better, and have any control over my own skin again, would be to cease using steroids.
Only a day or so after I stopped using steroids, my skin flared bright red all up my torso, arms and face. That night my skin felt hotter and itchier than it ever had done in my life. It was like the itch was deep inside me and my skin was burning. I scratched a whole, thick layer of skin off my back. It was terrifying; the skin just came off in huge wet flakes and underneath was red raw and oozing a clear liquid.
The following month consisted of the same hideous symptoms, which worsened every night and came in cycles of burning, red, hot skin that itched to the bone. When I scratched the skin was so weak it would just open up and ooze serous fluid. It would then dry up and crack and I’d shed ridiculous amounts of skin flakes all over the flat. I was in too much pain to move so my boyfriend had to hoover for me, up to three times a day.
It became so bad I had to take time off work and move home to be looked after by my parents. I couldn’t sleep at night. My face and arms swelled up. I was red from head to toe. My parents insisted that I see a dermatologist. Initially I was against the idea because I knew they would just try to prescribe me more steroids but I eventually agreed. After six hours waiting in hospital for an emergency appointment, I finally got to see a dermatologist.
I spent the first few minutes explaining my situation and why I thought steroids were worsening my condition. I got the distinct feeling he wasn’t listening to me and probably thought I was mad. After I explained that I didn’t want to use any more steroids, he immediately stated: “well usually the first line treatment for eczema is topical steroids.” He’d completely dismissed what I’d been saying and was insistent that I go back on steroids.
Knowing he couldn’t convince me, he brought in a consultant dermatologist to speak to me instead. She was a breath of fresh air and actually respected my concerns. Instead, she prescribed me medication to help me sleep and some emollients.
I was severely ill with TSW for around four months, but it has taken me around two years to fully recover.
As soon as I regained my strength, I started campaigning for this as yet undiagnosed condition. I discovered a strong online community and once I moved back to London I went to meet-ups for other TSW sufferers. This is where I met some lifelong friends with whom I set up ‘Scratch That’, an organisation campaigning for recognition for this preventable, iatrogenic (medication-caused) disease.
The majority of people who suffer from TSW are female. It is not understood why this is the case, however there are some theories. In a meta-analysis of all the existing studies into TSW, it was found that those most likely to suffer from it were women in their 20s who blushed easily. It is thought that some people have trouble metabolising steroids, and perhaps this is more commonly the case in women. Furthermore it is thought that women are more likely to go see their doctor about a skin complaint and be prescribed steroids to ‘fix’ it. This is likely due to the pressure put on women to look perfect all the time.
Thousands of people across the globe are fighting to get this condition recognised, and have been doing so for decades. We continue to be ignored and sidelined by the medical community and it’s time that changed. I sometimes wonder if perhaps part of the reason we have been ignored for so long is because most of our voices are female.
You can find Scratch That online at scratchthat.org.uk and on Instagram @scratchthat.uk
