There are 592 photos in the hidden folder on my phone and not one of them is seductive. I’ve been keeping a visual diary of my skin struggles since June 2020. The first selfie shows a few unsightly red blotches dotted on my cheek, brow and forehead. Over the following years, it’s pretty much the same three shots on repeat: face-on, left side, right side, sometimes smiling, often crying. I’ve become hardened to looking at my various states of distress but I rarely have the courage to open this folder of photos.

I had severe eczema as a child, but by the age of seven it had disappeared almost completely. Around the age of 30, I noticed little patches starting to creep back in. It was a stressful time – work, relationships, life – and it’s not unusual for skin conditions to ebb and flow in this way, but it was unnerving nevertheless. I went to my GP and was prescribed low potency topical steroids. The rash went away briefly, but it always came back.

Over the next six years or so, my skin deteriorated. I was stuck in a spiral of using stronger and stronger topical steroids. By 2019, I was slathering my body in clobetasol, the highest grade topical steroid available in the UK, which I had access to on repeat prescription. Regardless, the raging red rash continued to spread all over my body, and my face was permanently scarlet. By this point I was under the care of a dermatologist and I was told to keep applying while I waited to begin a course of phototherapy, UV light therapy that can help reduce skin inflammation. None of it controlled the eczema.

Plagued by an itch that persisted 24 hours a day, I would wake up after very little sleep covered in welts. It was around this time that I began to think something was seriously wrong. Without a sufficient explanation from dermatologists, I turned to the internet. It was then that I discovered Red Skin Syndrome (RSS or Topical Steroid Addiction) and Topical Steroid Withdrawal (TSW), rare conditions that can be caused by the use and subsequent cessation of topical steroids. I searched the terms on social media and was greeted with hundreds of faces from all over the world that looked just like mine.

Topical corticosteroids have been the bread-and-butter medication for doctors treating patients with skin conditions for more than 50 years. Eczema affects one in five children and one in 10 adults in the UK, and consequently, about 10.5m tubes of topical steroids are prescribed every year. They work by suppressing inflammation and constricting blood vessels to reduce blood flow. For millions of people, they are a safe and effective tool for controlling skin conditions. For the unlucky few – and it is unclear who falls into this category, although according to a 2021 study, it does appear to be mostly women – they can cause RSS and TSW.

The definition of what Topical Steroid Withdrawal (TSW) actually encompasses is still extremely loose. For some people, withdrawal causes an extreme rebound response worse than the initial condition, with wide-ranging physical symptoms that can last months to years. After a report by the Medicines and Healthcare products Regulatory Agency (MHRA) in 2021, guidance on the risks of TSW (typically skin redness, burning, stinging, intense itching, peeling of the skin or oozing open sores) is now included as patient information with all topical steroids.

Despite this, TSW is still not a properly recognised condition. It cannot be listed on medical records, for example, because it’s considered “self-diagnosis”, and dermatologists do not agree on what it is, why it occurs or how it affects patients.

“To the medical profession, it’s a term that covers a lot of different possibilities,” says Prof Celia Moss of the British Association of Dermatologists. “And the extreme photos that one sees on the internet are what a lot of dermatologists would recognise as erythroderma [intense reddening of the skin]. So I think many of them feel it’s just the eczema coming back. There’s a lot of uncertainty about it, because a lot of people think they have TSW who probably do not have TSW, in my view.”

This ambiguity is why Moss and others are pushing for more research. Without it, there are no hard rules for either diagnosing TSW or treating it. Few GPs are aware of the guidelines published by the MHRA, which can lead to heated consultations with patients when they refuse to use topical steroids, and dermatologists attribute some symptoms to worsening eczema, which means that when a patient suspects they have TSW, often there’s nowhere to turn.

I started experiencing TSW in June 2021. Within a week of stopping the use of topical steroids, my entire body was ablaze. In the shower, my knees would buckle in pain because the water felt like acid. I shed skin like a snake. I couldn’t walk properly, dress myself or sleep. Half my hair fell out and I lost a lot of weight.

After a month of this, I was forced to return home to my mum’s because I couldn’t look after myself. Within two days, she whisked me to A&E. My head-to-toe red skin (bar my hands) was now closer to purple and I couldn’t stop violently shaking. I spent the next week in hospital, where I was treated with a long course of oral steroids, a suggestion I was too unwell to refuse.

Back at my mum’s, I contemplated whether I wanted to keep living. With the possibility that it could take years to recover hanging over me, the enormity of what lay ahead seemed too huge to overcome. As the body’s largest organ, your skin is something you are aware of all the time – it cannot be switched off. For a while, I tried, but immunosuppressants were unable to curb the fierceness of my symptoms, and although biologic drugs provided some respite, they came with side effects almost as severe as the TSW itself.

Research published in the British Journal of Dermatology in 2019 found that 50% of adults with eczema had been diagnosed with anxiety or depression in the previous 12 months. Mental health complications are an often overlooked side-effect of skin conditions, a fact that is compounded by a lack of support, data-backed research and, in the case of TSW, information.

After leaning heavily on the online community to wade through her own experience of TSW, Holly Broome co-founded Scratch That, an online campaign and resource centre aiming to raise awareness about TSW. “At this point, all we have to go on is patient experience,” she says. “But the lack of empathy is astounding. I don’t think anyone who has never had a skin condition can possibly understand how debilitating it is, so it’s no wonder that sufferers get angry – they feel like they’re being ignored.”

Around one-third of calls to the National Eczema Society helpline (0800 448 0818) are now on the safe use of topical steroids and there was a sixfold increase in searches for TSW on Instagram between 2016 and 2020, according to the society’s chief executive, Andrew Proctor. Social media is awash with desperate people seeking more information on the condition. For small charities like the NES, research can’t come quickly enough, and yet the process of setting up new studies is often long and costly. Meanwhile, it is supporting other measures such as clearer potency labels on topical steroid packaging, and research into the long-term safety of topical steroids, which are only licensed for short-term, periodic use.

Louise King used topical steroids to control her eczema between the ages of five and 28 until eventually they stopped being effective and she started experiencing TSW. Her battle with the condition lasted more than three gruelling years, during which she was bed-bound for six months and ultimately became suicidal. She has since fully recovered but not before a period of intense psychotherapy to help manage her resulting PTSD.

“If people are going to be prescribed topical steroids, they need to be able to make an informed decision about what risks there are,” King says. “And the drugs need to be treated similarly to antidepressants or something like that, so that they’re monitored.”

Some doctors counter that they feel as though they are being asked to treat patients with their hands tied behind their backs, especially GPs, who have few alternatives to topical steroids to prescribe for mild skin conditions. They are also encountering increasing levels of corticophobia: a fear of using topical steroids, especially among parents of children with eczema. New treatments are emerging for more severe cases but the vast majority of patients will never be referred to a dermatologist. While there are clear National Institute for Health and Care Excellence guidelines for topical steroid use in children, no such information is available for use in adults.

I ceased all drugs in July last year and since then, there has been a gradual improvement on 80% of my skin. And while I no longer apply any moisturiser or creams at all, the threat of a flare-up is always lurking and the residual effects of TSW are ever-present – the wounds extend far beyond skin. No aspect of my life has been spared from its grip and without an end date, every day is shrouded in uncertainty. I grieve for the person I was before all this and the time I’ve lost.

• In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org