Amanda Hipkiss-Torrance (Mental Health Nurse, Coach and Therapist)
3rd February 2025
Today is Topical Steroid Withdrawal (TSW) Awareness Day, the day I have chosen to speak out and share my experience of this condition that has impacted every aspect of my life for the last four years.
I’m going to get vulnerable with you in the hope that those of you who share my experience do not have to feel alone and know that someone truly sees, hears and most importantly believes you.
What is Topical Steroid Withdrawal?
ITSAN (The International Topical Steroid Awareness Network); a nonprofit charity formed to raise awareness about the condition, describe Topical Steroid Withdrawal (TSW), also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), as a debilitating condition that can arise from the use of topical steroids used to treat a skin problem, such as eczema.
The charity goes on to explain that TSW is characterised by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. They highlight how often the condition spreads or ‘progresses’ and is frequently mistaken for worsening eczema, contact dermatitis, an infection, or an allergic reaction.
ITSAN also discusses that the condition comes with non-skin related symptoms and secondary complications that can make life unbearable for those with this condition.
During this blog, I will discuss my experience of the condition. However, many other sufferers have different experiences and perspectives to mine. Therefore, I do not speak for the community. I also do not speak as a physical health professional but will draw on my mental and emotional health knowledge as a Mental Health Nurse, Therapist and Coach.
My Journey
Many of you will remember 2020 for many reasons I am sure, and I have no doubt that you will all have your own stories, this is mine.
Soon after we were all told to ‘stay home to save lives’, I wanted nothing more than to hide away from the world as my TSW journey began. As I write this, it’s hard to recall exactly the progression of symptoms that I experienced as it felt like they changed on a daily basis and certainly there was no linear trajectory that I could see. However, I will try to give you an idea of my experience.
For me, TSW has mainly affected my face. At its worst my symptoms ranged from severe swelling to the point where I was unrecognisable at times to seemingly unexplained rashes that would shift and change without any obvious trigger. Alongside, the rashes often came uncontrollable itching resulting in many sleepless nights. Other times it was redness and an intense burning that made me want to do anything to get out of my skin.
One of the most challenging things was the inability to tolerate heat that seemed to appear after I was given yet another topical medication. At any sign of increased heat all of these symptoms would be ten fold. In fact, when TSW was at its worst, I could do nothing more than lie with a cold compress on my face.
Then there’s the massive increase in allergies! Although I had always been sensitive, I began to find that I couldn’t tolerate anything; reacting to everything I came into contact with. To try and find a solution, I not only started eliminating and restricting food but also other things such as cosmetics, cleaning products and toiletries.
Showering and bathing was no longer something to look forward to, in fact, at times washing became something I dreaded. Not just because everything I tried to use, I reacted to but because just getting wet was stressful and made any symptoms worse. For a good year I think I barely washed my face attempting to ease and heal my symptoms. At times, my husband even helped me wash my hair so that I didn’t get water near my face.
As a Mental Health Nurse, during this time I was also forced to continue to wear a mask and use sanitiser which only served to worsen my condition to a point where it was unbearable. Until one day, after leaving a client’s house, I called my manager in tears and I have not worn a mask since. No longer allowed to work indoors, I continued to do my job and support my clients by creating innovative ways to meet outside and under the shelter of a baseball cap to hide my face. I actually remember drinking tea in the snow with a client who was just glad to be out! Looking back on the photos of that time, I cannot believe that I managed to continue to work and that at a time when everyone was talking about health, no one seemed to care about mine. Because of this, I eventually left this job, created my own business Freedom 2 Heal and worked remotely as a Mental Health Nurse until last year.
Not knowing the cause initially, I saw numerous doctors, dermatologists and specialists who offered a string of misdiagnoses alongside unhelpful and damaging treatments including steroids which we know now were the cause of my problem!
Feeling at a loss, my husband and I began researching and came across Topical Steroid Withdrawal, everything pointed to it and we both knew that this was what was happening for me. However, the ‘professionals’ that I saw did not believe me, some even stating that TSW didn’t even exist; making me doubt myself. They continued to throw steroid creams at me despite my fears. In fact, I remember being in one consultant’s office in tears asking for a different treatment only to be completely dismissed.
With things continuing to get worse, in August 2021, having lost all faith in the medical model, I made the decision to stop all treatment and used my last steroid cream. For the following three years, I treated myself. I tried so many natural remedies and therapies, I went down every rabbit hole you could imagine trying to find a solution. I wish that I could now give you a list of things to do to heal TSW, but in all honesty, I am still working this out and we are all different; one size doesn’t fit all, something I have learned over and over again!
In the midst of another flare in February 2024, I became so desperate, I made the decision to start medication. Of course, the Dermatologist did not believe I had TSW. However, having done my research, I chose a medication that treated both eczema and TSW. Going down this road again was not an easy decision. Although it has helped enough for me to return to face to face work, it hasn’t completely solved the problem, and it comes with side effects such as hair loss that only fuel my low confidence. Did I make the right decision? I honestly am not sure, and any options now are fuelled with anxiety.
Diagnosis
Finally, in August 2024 I received my diagnosis of TSW and have been added to the ‘psychodermatology’ team at the Royal London Hospital, a fitting name considering the psychological damage this condition causes.
Again in the consultants office, I sat in tears. This time for a different reason. This time I felt a sense of validation; validation of my journey; my pain and everything I have been through to this point. Of course, I also felt angry that it took this many years to finally be believed, but for that moment, I allowed myself to feel the relief that comes when someone truly sees you. Funnily enough, this diagnosis came at a time when I no longer even brought up TSW. In fact, the dermatologist asked when I responded to her diagnosis with heartfelt thanks, why I had not suggested TSW myself!
Now, this diagnosis doesn’t change my recent treatment plan and it doesn’t change the years I left my skin untreated or the emotional and physical damage this and TSW has caused. It also doesn’t mean that there is some magic pill to speed up my recovery. But what it does do is put me back in charge of my recovery. It’s removed the self-doubt created by those who didn’t believe me and it allows me to trust myself again.
The Real Impact of TSW
I have talked through a lot of the physical impact of TSW but the real impact for me was and is the emotional and mental distress. The condition has taken me to some very dark places; times when it was so much I really didn’t want to exist any longer. This may sound dramatic but it has already been recognised that patients with skin disease can present with higher rates of suicidality than the general population (Lockwood et al., 2023). The same study highlights the link between skin conditions, mental health and quality of life.
For me, TSW has meant that things I used to enjoy such as salsa dancing became unbearable, if my skin didn’t become uncomfortable it would be the unwelcome and thoughtless comments of how red I looked from other dancers. Going to the gym was the same, I remember working with a lovely Personal Trainer who trained with me on the premise that he couldn’t make me sweat to avoid the itching! This didn’t always help and on difficult days I still left in tears. In fact, for a long time I gave up the gym altogether and my physical health has suffered because of this.
TSW has also had a huge impact on my relationship, at times my now husband feeling like my carer. The heat and discomfort at night still means that a lot of the time we have separate beds. Although, there are times that I have crawled into bed with him in the morning having woken with another flare in tears and unable to console myself. At some points, I refused to go out socially at all, or would prefer a quiet dog walk rather than the exciting dates we used to have. The fun woman he met pre 2020 was missing for a long time and to some extent is still making her way back.
It’s affected other relationships too, not feeling like meeting up with friends, wanting to hide away in doors. In fact, planning any event was and can still be stressful, never knowing how my skin will be, sometimes it can feel easier to delay or avoid making plans altogether.
Going out for dinner isn’t much fun either, when you’re scared to eat anything in case of a reaction. It’s also a bit of a running joke that I always get the worst meal, I mean have you ever had a dairy, gluten, nut, whatever… free pizza!? Even eating at home can be stressful especially if I haven’t planned and on worse days I get so overwhelmed or worried about a reaction, I miss meals altogether.
And it’s not just food that causes stress, many things can send me down what I call the ‘rabbit holes’. Those of you who have been through TSW or in fact any other chronic health condition will understand the depths that we go to trying to find a solution. Whether it’s ending up in dark corners of the internet looking at balm made from gold and angel wings or listening to well meaning friends or strangers advice (believe me, everyone has a solution) as to what to eliminate from your diet next; they all take you down the hole! And you know what’s at the bottom? Anxiety; the searching can become this anxious spiral that you can’t get out of!
Out of everything, and it may sound shallow but what I really miss is being able to wear makeup every day as at the moment my skin isn’t yet in a place to cope with this. Since TSW my appearance has changed and I know I am still not back to the old me. So the days I am able to wear makeup I feel confident, more like that old self and more resilient. They are like a day off from TSW where I feel better able to face the world.
Yes, there have been days that have been good, those are what you see on Facebook. For instance, despite an extremely stressful build up, I was lucky enough to have a good day for my wedding day. It took a lot of planning, a clever and flexible make-up artist, understanding photo/ videographers and fans, lots of fans but I felt good on the day. In fact, I think it was the one day out of the last four years that I truly felt like the old me. Yes, the champagne may have had something to do with it, but I am truly grateful for a day off TSW!
Lastly to add that TSW has also been the catalyst for positive change, where my experience of having this condition and how this was managed at work back in 2020 led me to start my own business Freedom 2 Heal, a therapy and coaching service which leads me nicely onto this next part.
What helped?
Now, as I said earlier, I’m not here to advise you how to heal TSW and I certainly do not have all the answers. However, I will share some of the therapies and practices that have and continue to support me in my TSW journey.
EFT and Matrix Reimprinting
In 2021 I trained to be a EFT and Matrix Reimprinting Practitioner. This was also around the time I weaned off the steroids. This course was life changing, from giving me the tools to ease the impact of TSW to meeting some wonderful women who still remain in my life. Including a fellow TSW sufferer who has held space for me many times since. Having someone who truly understood was and still is invaluable, another reason that I am sharing my story. The tapping technique itself has become part of my daily practice. Whether a distraction from the discomfort or to ride the emotions that arise. There have even been times I have even sat in front of a mirror and cried at my appearance while tapping to help form some kind of acceptance – something I am learning is key to coping with TSW.
Yoga
Prior to 2020, I was already doing my own morning practices but this became difficult as my TSW progressed. It was around this time I found the most amazing yoga teacher who came to my home. Some days all I could manage was restorative yoga sessions where she would gently put me in different poses and leave me wrapped up in a bundle of pillows and blankets when she left. I am so grateful to her for this time and space to be nurtured and supported. Yoga continues to be a part of my daily practice and the first thing I do in the morning. I focus on Yin mostly at the moment, slow paced and long poses. This helps to calm my nervous system that is still healing from the trauma of TSW.
Meditation
As I said before, I went down many rabbit holes trying to find a solution and at times can still get caught up in this. Meditation gives me some time away from the anxiety caused by this constant search. My current favourite is RAIN by Tara Brach, a beautiful way to sit with difficult thoughts and emotions. Some days I listen to manifestation mediations, although some days this isn’t so easy.
Psychodermatology
This is a form of psychotherapy facilitated by a therapist that understands the impact of skin conditions on our mental and emotional health. After the wedding my skin began to worsen again and I came across this modality. Although my diagnosis was eczema at the time, it was really helpful to work with someone who understood what life is like for someone who has a chronic skin condition.
Internal Family Systems
Right now I am working with a therapist who specialises in Internal Family Systems (IFS). IFS works on the understanding that it is the nature of the mind to be subdivided into a number of subpersonalities or parts that create an internal system; like an internal family. Each part has been created due to a need for protection and will find specific ways of keeping us safe. However, many of these ways have been developed in early childhood or are driven by emotions such as shame or fear and don’t serve us anymore. IFS helps us to connect with these parts and help them find new ways of connecting with us. During this therapy, I have found that many of my parts are connected to my skin and knowing this has allowed me to come from a place of curiosity and moving towards the discomfort rather than trying to fight it. It’s also helping me in finding ways to connect with those parts of me in more compassionate ways.
This leads me to what I am starting to realise is the most important part of my recovery from TSW and that is finding unconditional self-acceptance. I am not saying that self-acceptance or even self-love will heal my skin. However, I know that on the days that I am less focused on my skin, the days I am kind to those struggling parts and the days that I am compassionate and nurturing to myself are much easier. I also know that when we shift our perspective our problems shift alongside. So this is now my work, yes, I still end up in rabbit holes and still have desperate days where the compassionate me seems to take a break but I am doing my best and that’s good enough.
Thank you
Before I sign off, many pages later than expected, apologies! I would like to say thank you so much for taking the time to read my story. It’s been an emotional yet cathartic exercise. If you are struggling with TSW, I hope that you found something helpful here, even if it was simply the fact that you are not alone, because you are not, I see you.
I must also express gratitude to those in my life who have been on this journey with me; who have supported me through the dark days and loved me regardless Especially my husband who has walked every step and felt the pain with me.
And special thanks to Betty, our Boston Terrier who has given me a reason to get up and out even on the most difficult days and teaches me about unconditional love every day.
For anyone struggling with their mental health, whether due to TSW, another skin condition or in fact anything, you can find some helplines here.