I have Red Skin Syndrome, but I have not given up hope

By Clara How, Jul 04, 2019

Jing Rui is a Dayrean who reached out to us about her experience with Topical Steroid Withdrawal, or Red Skin Syndrome. When we read her email, we had no idea what this was – Google told us it was a little-known skin condition. 

At some point, everyone has struggled with insecurities about the way we look. When it comes to skin problems, we see doctors, we figure out what works best for us, and for most of us, we find a solution. But for Jing Rui, hers is a long-standing condition that she has had to live with since an early age, to the extent that it gets in the way of her holding a full-time job.

This isn’t just her personal story about self-acceptance, but also a message to others who have had similar experiences – you are not alone. 

Upon meeting Jing Rui and hearing her story, we believe she is one of the bravest individuals whom we have met, and we appreciate the trust that she has given us to tell her story.

* * * *

I remember an incident last December that took place on the bus. It was a bumpy ride, and when the bus lurched, the woman next to me turned and said: “Don’t touch me! You have a skin condition. Don’t touch me!”
 
All I could do was mutter: “I did not touch you...” and promptly broke down in tears. I could not hold them back. I couldn’t even move away to change seats, because I was in so much physical pain that I couldn’t stand up.

This isn’t an uncommon occurrence – there have been other cases where strangers come up to me and offer unsolicited advice. Once, a woman approached me at the MRT, saying, “My daughter also had eczema, but she tried this thing and it went away. You’re a very pretty girl, I don’t know why this has to happen to you, it’s so sad.”
 
Another incident took place when I was having dinner with my friends and I saw a couple smiling at me. When they left, they stopped by my table and the girl passed me a note. It read that her boyfriend had eczema, and suggested I try certain remedies. 

I understand that these people mean well, but it also feels intrusive. I was having dinner with my friends, and this stranger was bringing attention to something I don’t want to necessarily always think about.
 
What these people don’t realise is that I don’t have eczema. I have a skin condition called Topical Steroid Withdrawal (TSW), or Red Skin Syndrome.
 
TSW is a condition that occurs after a patient stops a long-term use of topical steroids. When someone has TSW, their skin becomes red and raw during a flare up, and could experience flakiness, swelling, oozing. Symptoms vary depending on how long one has used steroids for and the potency of the steroids used.
 
It all started when my parents temporarily moved to the United Kingdom when I was a baby because of their postgraduate degrees. I developed eczema because of the dry climate, and they took me to a doctor who prescribed me steroid creams.

But when we came back to Singapore, the eczema continued, and my doctors continued to prescribe me steroid creams. These creams are given so that they can control the rash, but they also suppress the skin’s natural immune reaction to allergens, or whatever it is that is causing the rash. 

Growing up, I would go to primary school wrapped in bandages, because my skin was so raw. I would scratch unconsciously during the night, and wake up to bleeding skin. I had no choice but to bear the pain and shower, rebandage myself, and go to school. I didn’t have many friends except for the one or two, and when they were away I would be alone during recess. 

There was a girl who called me pizza face, and even my best friend commented that there was a red ring around my lips and it made my mouth look big. These comments really stayed with me.

My skin was clear in secondary school, but my insecurities manifested in other image issues. I developed an eating disorder for a year at 15 and weighed myself every day. What got me out of it was watching documentaries about extreme eating disorders cases and telling myself, "I cannot harm myself anymore.”
 
The redness started to come back in junior college, and there were days when I would have to study at home and even submit projects from the hospital. At this point, I was still using steroid creams.
 
The doctors did tell me that steroids can have a side effect of thinning my skin, but they didn’t tell me about the long-term effects. What happened in my case was that my skin became addicted to steroids – it learnt to adjust to the steroid dose and would flare up, to which I was given progressively larger steroid doses. It reached the point where no matter how high the dosage of steroids, my skin would still cause me problems.
 
That’s when I started suspecting that steroids were the problem. Because no matter how strong the steroid was, my condition was still there – which means that it can no longer be suppressed. So when I was 18, I thought, enough is enough. I cannot go back to steroids.
 
The catalyst was being hospitalised after a particularly bad flare up. I was put on topical and oral steroids which helped temporarily. But just a week after being discharged, it came back, worse than before. I was desperate and I didn’t know what to do to solve this. I saw a Traditional Chinese Medicine doctor and I Googled all my symptoms.

I felt like my condition was getting worse, and it was like a ticking time bomb – I was losing weight rapidly, started losing hair, had enlarged lymph nodes, I was feeling weak all the time and had insomnia. It was very clear that this wasn’t just my skin.

It was when I was Googling that I came across a website called ITSAN (International Topical Steroid Addiction Network), an international network in the United States that lobbies against the improper use of steroids.

The more I read up on it, the more I realised that it is exactly what I’m going through. I had lived for all these years not knowing my exact condition, and thinking it was eczema. But I realised that it was the steroids that were the ones doing me harm, and I needed to stop using them for the sake of my health.
 
Going off steroids was a confusing time. TSW is not a widely known or recognised condition, so you doubt everyone, including your doctors, who offer you advice. I had to explain to my parents why I didn’t want to be reliant on steroids – they were sympathetic, but they didn’t always understand what I was going through and urged me to get back on steroids. 

They would ask why I couldn’t do the dishes, when it was too painful to touch water. I would wake up in the morning with raw, bloody skin, but in too much pain to get out of bed. My dad would ask me why I wasn’t going to school, and it was difficult for me to explain how much pain I was in.

Back then, it was a confusing time for my parents and they tried to suggest many things to help me. In the past two years, they have been a lot more understanding after I explained what TSW was and showed them documentaries. 
 
But I was adamant about not going back to steroids. I had seen for myself that they were not helping me: It had reached the stage where the steroids were what was causing my condition. Going back on them would just be a temporary relief.
 
I struggled with insecurities until I was around 22. When strangers make comments to me on the street, it hurt and reminded me of how I lost my appearance. I spent many nights angry at doctors for prescribing me steroids.

Acceptance doesn’t happen overnight. It’s ironic that it was my condition that taught me to accept myself.

It was my condition that caused my insecurity, but when there’s nothing I could do to cover it up anymore or make it go away, I had no choice but to stare at myself in the mirror and say, this is me. I can only embrace and accept myself as I am, no matter how I look.

I’m now 26, and have been steroid-free for the last eight years. Since going off steroids, I’ve had three bad flare ups, with each lasting one to two years. I’m currently going through my third flare.

Anything can cause a flare up. It could be falling sick because your immunity goes down, stress, hormones when you get your period – anything that could cause your skin distress is magnified. 

I can’t do a lot of the things that many people can: I can’t exercise, because even simple stretching may cause my skin to crack at the joints. I can’t wear makeup. I can’t wear any clothes I like (I used to wear a lot of dresses, but now I wear long sleeved tops and trousers). I would just like to live a normal life. 
 
When my skin flares up, it doesn’t just affect the way I look, but it also has an overall effect on my body. For example, I can’t sit for a long time in an air-conditioned room, as the skin starts to harden and it becomes very painful. I have to constantly put on moisturiser in the toilet to soothe myself. The skin around the joints thickens and hardens, making it very painful to walk.

After graduation, I started working as a social worker. But it was very difficult to work. I was constantly exhausted, to the point where when I got home I would feel like I couldn’t function. Because the skin is shedding when you have TSW, your body is using a lot of energy to reproduce all that skin, and it causes fatigue. For me, this affects my whole body, and it takes a huge physical toll.
 
Eventually, I had to leave my job. It had reached the stage where I had no choice but to put my health first, and if I had kept on working that would have been impossible. Another problem with this condition is that I don’t know when I can fully recover and come back to full time work.
 
I was both relieved and sad when I had to leave. On one hand, going to work every day was a huge struggle. On the other, I genuinely enjoyed my work as a social worker where I would interact with families or clients who sought counselling. I also had very understanding bosses and colleagues who knew what I was going through, but work is work – I can’t be constantly taking medical leave.
 
I took a year out to fully rest and take care of my health, and am now holding a part-time job with SGInnovate where I attend to their Audio Visual needs during community events. It gives me some side income, but it’s not something that fulfils me.
 
In that one year, I didn’t do anything except stay at home and watch Netflix. My computer was my best friend. Even having to stand and use the toilet was tiring, because my joints hurt, and my pants would stick to my skin because of how raw it was. The thought of pulling the cloth from the skin and all that discomfort made me procrastinate for 30 minutes just to psych myself up to use the washroom.
 
But I’ve always had that personality where I just ‘tahan’ and get through difficult times. My teacher in secondary school even called me a stoic, because I would just soldier on. I was never tempted to go back on steroids because I knew that my condition would come back, and likely be worse than before.

I know that there are many people with this skin condition who get suicidal thoughts. Ending my life was never an option for me, because I always feel like I will recover one day. We must always have hope to keep striding forward everyday.

I had the same hope when it came to dating. After breaking up with a boyfriend (for reasons other than my condition), I started a profile on OkCupid, and ended up going on a lot of dates over a year and a half. I was transparent about having TSW and put a photo of myself in my profile, and before meeting guys I would tell them that I had a skin condition. It was like an instant filter for me. If they see my picture with red skin and still talk to me, that’s a good thing.
 
But even though I was upfront, some people couldn’t tell how bad my skin really was until they met me in person. I would go on dates, and you can tell from their demeanour that they don’t want to see you again, and it’s quite obviously tied to how I looked. The conversation before meeting would be great, but they would seem shocked when they met me, and not bother to try to get to know me on the date.
 
But I was never disillusioned about dating. I told myself that there are other people with health conditions who have found love, and that it’s possible that I can find someone too. I was clear of the type of person I wanted to be with: I needed someone who accepts my condition and who can support me. I was very adamant about that, because I knew my condition would stay with me for a long time.
 

Just because this condition will stay with me for some time doesn’t mean that I shouldn’t be in a relationship, or that I shouldn’t be loved. So why not find someone who knows about it, and who is willing to journey with me?

Two years ago, I met someone on OkCupid. One of his early messages to me was, “You must have a really itchy condition.” And I replied, “Yes! Itchy all the time.”
 
I was initially insecure when we started dating, especially since my skin got progressively worse. There were days where my skin would be oozing with pus, and it didn’t smell good. I would tell him that I’m sorry that I look like this, but he was always reassuring. Over time, I got less and less insecure.
 
During a bad period when I was bed bound, I would save all my energy for that one day a week so I could go out and meet him. Even now, if it’s a bad day and I can’t, I tell him that I need to rest. Sometimes we also spend time gaming together online. It is difficult to be physically intimate, because my skin feels uncomfortable, and he’s worried about hurting me. At the start of our relationship, it was too painful for us to be intimate. But he has always been understanding.
 
It was not easy to find my boyfriend – I met so many people before him! I know a lot of people say that dating apps don’t work, but I truly believe that if you keep meeting people, and have faith, you will find someone.
 
Other than my boyfriend, I’m beginning to be in a good place now with my life. I lived for years thinking that there was no treatment to TSW, because the only solution I was offered was more steroid creams. But recently, I’ve discovered a clinic that specialises in TSW, and I’ve been going for treatments for the past three months.

They were the ones who approached me, when I was doing my job at an SGInnovate medical technological conference. I’ve been approached by many people before, so at first I didn’t take them seriously. But once they identified that I had TSW, I was amazed that he knew the term. They showed me pictures of their patients who looked like me, and they were very empathetic and not pushy. The doctor even said, “I know, you can’t even go to hot pot restaurants because the steam affects your skin.”
 
I’ve been going for treatments and I see the results, and have since recommended them to other friends whom I have met through Facebook groups. Since discovering what my condition was, I found a group of Singaporeans who also have TSW. Before, I felt like no one understood, and I felt alone. Now, I’m so much happier to have this support network, and we are in a group chat to give each other support.
 
Right now, I focus on very short term goals. When my skin was in a very bad state, I lived just one day at a time. Today if I feel good, I decide what I want to do. If I don’t feel good, it’s still okay. Planning with friends can be tricky, because I can end up cancelling depending on how I feel.

I’m lucky to have a close group of friends who have been with me since secondary school. They have never pressurised me to meet up whenever I feel like I’m not able.
 
I find little ways to keep me happy, like dyeing my hair (personally, TSW doesn’t affect my scalp though I do have hair loss), or buying myself a pair of nice shoes. I would amplify the smallest signs of progress to motivate myself. If today my skin isn’t as flaky as yesterday, that’s something to be celebrated. When I don’t want to shower, I tell myself that yesterday I managed to shower, so today I can get through it again and forget the pain. These mantras help me get through the day.
 
When it comes to travelling, I take steps to prevent a flare up, and I fly to countries that have a similar climate so my skin doesn’t react badly to a big climate difference. I also try to find an Airbnb that has a washing machine and a vacuum cleaner, because I have to bring my own bedsheets and do laundry every day. I don’t want to worry about staining hotel bed sheets with blood or pus. Every morning I would wake up an hour early to shower, vacuum all the skin flakes, and change my bedsheets. It’s tiring, but you have to compromise to enjoy your holiday.
 
I know that eventually I want to go back to full-time work, and have a job that I care about. I don’t have concrete plans, but eventually I want to do something that helps others with skin conditions, whether it’s advocacy, or even working in a skin clinic, because I can relate to the patients.
 
I’m sharing this story because I think more of us need to come forward, and share our experiences. The public doesn’t always understand skin conditions, because there’s not enough advocacy. I was happy to read an interview that actress Priscelia Chan did with Channel News Asia, where she shared that she had TSW, and was getting treatment.

If you’re a caregiver to someone with a skin condition, the advice I would give is to be patient and to trust the process of healing. 

I understand that it’s hard to see your loved ones in pain, but recognise that emotions play a huge part in their journey, and your support is crucial.
 
For patients, I believe that it’s important to communicate the pain, and explain why you cannot do certain things. If it’s hard to convey this clearly, someone else, like a doctor, can be that person. I recently brought my dad to my doctor, who explained my condition to him.
 
I would say the important thing about communication is to tell your caregivers how you want to be spoken to. Instead of them constantly asking you questions, tell them if you need time alone. Instead of telling you not to scratch, tell them what you would rather hear instead. 

If you have a skin condition, I encourage you not to give up hope that you will recover. Always motivate yourself, and find support.

* * * *

We also spoke with Jing Rui’s boyfriend about the importance of caregiving, and his thoughts on being part of Jing Rui’s support network.

* * * *

My name is Keith, and I am Jing Rui’s boyfriend of two years.

I first started using dating apps because I have a very busy job, and was very open with any means of finding connections and meeting new people. When I saw Jing Rui’s profile, I could tell that she had a skin condition, but didn’t want to judge her so quickly. In fact, she was the one who said hello to me first! I just went along with it, and realised that we could immediately click with each other.

Before meeting her, I could only guess her struggles, and felt sympathetic. But only after we met in person did I realise that what I imagined was just the tip of the iceberg to what she had to go through.

Our relationship didn’t hinge on her condition, nor did we have a long talk about it in the early stages of dating. Understanding TSW was something that I gradually uncovered as time went along. For example, when I suggested a place for a date, she would tell me that it was too cold for her to be in. That was when I found out that she was sensitive to air-conditioning.

To see her go through what she does on a daily basis and still be so strong is remarkable, and that’s why I fell in love with her.

It was never about the condition – what I was more concerned about is how it affected her. I found out that people with TSW face a lack of mobility, and even things like taking the MRT or enjoying a walk in the sun is extremely challenging for them.
 
When I first saw her at home during a bad flare up, a lot of thoughts went through my head. But I told myself to just think about what she needs. Does she need me to vacuum the skin flakes off the floor? Does she need me to buy food? Does she need me to carry her? What she needs, I will do.
 
I don’t think it’s helpful to think about things that don’t make the situation better, like, “Oh, you could have done this or that.” She’s already tried everything that can be done, and as it is, she has to gracefully deal with strangers offering her unwarranted advice.

I just want to give her a sense of reassurance, that she has a partner to walk with in her life.

We find little ways to get through the tough times, whether it’s walking in a park, eating a good meal of curry, playing computer games, or her introducing me to music by long-forgotten Japanese artists. These are the things that I hold close to.
 
Like any relationship, we have misunderstandings and things we need to work through, but we do our best to remember that both parties love each other. Working towards a future together is an end goal that gives us motivation when things get bad. We know that we want to be together and eventually have a family, but we want to focus on the next steps: for her to get a full-time job, and for me to work on career advancement.
 
For those of you reading this who have TSW, or a skin condition, I want to say that you are resilient beyond measure. There are so many stigmas and societal pressures that they face, and I think it is extremely important to give strength to all these individuals.

Writer’s Note:
 
Jing Rui would rather keep her Dayre handle private, but she has been documenting her journey on Instagram, under @/tsw_trooper_sg.
 
The website that Jing Rui first discovered about TSW is ITSAN, https://www.itsan.org/. The organisation is a Member in Good Standing of the Coalition of Skin Diseases, and a Member of the International Alliance of Dermatology Patient Organizations. ITSAN also has a group of medical doctors on their advisory board. 

Create Collective has reached out to medical professionals who have confirmed the existence of TSW and that more research is being conducted, but declined to comment further. 
 
Prior to publication, we had reached out to ITSAN for comment but did not hear back in time. As of August, we received a response from a representative from the board of directors, and would like to share their thoughts. 

“The primary reason why TSW isn’t more widely recognised is because topical steroids are the gold standard in dermatology, as they are very powerful and effective drugs for a myriad of skin conditions, and so many doctors either downplay or dismiss TSW.

“The most common sign of TSW is the rebounding and spreading of the eczema in between topical steroid applications, or after discontinuing them. If the topical steroids are no longer working effectively and/or the eczema keeps coming back, that is a sign the user is caught in a cycle of physiological addiction or dependency.” 

ITSAN encourages people to visit their website to find out more of the signs of TSW, and for resources that offer medical and peer support.

When it comes to any health-related topics, we encourage everyone to conduct their own research and speak to a medical professional. Everyone’s journey is unique.
  
Photos provided by Jing Rui. 

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