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Topical Steroid Withdrawal can make you feel hopeless, because it can be so difficult to control. Plus symptoms that you experience can be incredibly debilitating.
I've personally worked with a number of TSW clients who said that the TSW was by far worse than their original skin issue and that some of the symptoms (like hair loss and not being able to sleep) really pushed them to a scary limit mentally.
Because I'm not trained to support people in this state, I started to ask colleagues if they knew of anyone who offered counseling to those going through TSW who also had knowledge about what they were going through.
My guest today not only has gone through TSW, but offers just this type of support. I'm excited to talk about tips to support your mental and emotional health if you are going through or living with TSW.
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
My guest today is Jing Rui Yeo. Jing is a Topical Steroid Withdrawal (TSW) warrior from Singapore.
She has been in TSW for 10 years, and is about 95% healed now. Jing has a Bachelor degree in Social Work and provides counseling for TSW folk.
Join us as we talk about the emotional impact of Topical Steroid Withdrawal (TSW).
Has TSW impacted your mental health? Tell me about it in the comments!
In this episode:
- How did Jing end up with Topical Steroid Withdrawal (TSW)?
- Why is counseling important in the TSW space?
- How can TSW affect mental and emotional health?
- Tips for seeking support on your TSW journey
Quotes
“There are many, many misconceptions of skin conditions, no matter TSW, or eczema and all that. And when people can see it on your body, it's almost like an open invitation for people to comment.” [10:44]
“It is not just one type of grief that you are going through, you grieve your appearance firstly, your appearance affects your personality, your character, all your core beliefs. You can't carry yourself in a way that you want to carry yourself. Our appearance actually really makes up a huge part of our personality.” [11:41]
Links
Find Jing online here (and schedule a call with her if you need support)
Follow Jing on Instagram
Getting Emotional + Mental Support For TSW w/ Jing Rui Yeo FULL TRANSCRIPT
Jennifer: Thank you, Jing so much for being here. I really, really appreciate you coming on the show. It's actually really exciting to have you because you're coming all the way from Singapore. So, we have to figure out the whole timezone thing.
Jing: I know. I know.
Jennifer: I wanted to welcome you to the show and also ask that you share your experience with the listeners. What caused you to end up with TSW? What skin issue were you dealing with? And what happened that led you here? Because you have a very unique perspective in dealing with TSW.
Jing: Wow. Well, my story started 28 years ago when I was born. So, I had eczema when I was a baby. So, of course I was born in Singapore and my dad received a letter to study in the UK. And so, as a small family, my dad and my mom and myself, I was a baby, we moved to the UK for my dad to complete his studies. And while I was there, the dry weather caused me to have some eczema. And of course, my dad and mom brought me to the dermatologist and I was prescribed steroid creams for eczema, that is like a standard protocol. And ever since then, I think my eczema never went away. It continued getting worse or perhaps it was on and off throughout my life. So, I continued using the steroid cream since I was baby until I was about maybe 17 years old.
Jing: So, I have a 17 year steroid usage history and I was on quite a frequent application. Every day I would apply it without fail. I remember as a child, my dad would apply it on me every night after I came home from school, having a shower, I would stand in front of him and he would be applying all the areas that I had wounds on. And as I grew older, I decided to do it on my own when I was in my teens. The eczema came on and off. Unbeknownst to me, I was already having topical steroid addiction and it was just uncontrollable when it came to 17 years old. When I went into junior college, I was really stressed. My skin just blew up and I felt like there was something fishy happening.
Jing: I wasn't feeling that the steroids were helping me. In fact, they came back worse each time I stopped them. So, I decided to stop using the steroids without even knowing what TSW or TSA was. So, I was going through withdrawal for two years until I came across the ITSAN website. So, when I withdrew, I went immediately to traditional Chinese medicine. And when I discovered ITSAN, I was two years on medicine already. And I was furious when I discovered what it was. I Googled all my symptoms and I even thought I had multiple conditions at once because I had so many random symptoms.
Jing: I thought I was having some sort of adrenal gland issue. I had weight loss, I had hair loss, things like that. So, yeah that really began my TSW journey. I tried all sorts of things, all sorts of therapies. The weirdest one I tried was bathing in traditional Chinese medicine, which included certain dry insects. And I was like, I know the extent to which we go to heal our skin, it's insane.
Jennifer: And the thing is too, you're desperate. You just want some ways to make it stop because I have actually said repeatedly that TSW or TSA is like a living hell. I think rashes are awful, whatever type of rash. Like some people have eczema, full body, some people have debilitating rashes in areas where like, for examples with other conditions, they may have it in their armpits or groin. So, just movement becomes very challenging. Some people have it on their feet to the point where they can't wear shoes and it becomes difficult to walk.
Jennifer: I mean, everyone's experience just with rashes, whatever they are, alone, it's very challenging. But to get to this point is even worse because it turns into this monster almost that you can't control. You don't know when the end point is. And then like you said, you have all these weird, random things going on. I remember specifically one of my clients, she was tested for all of these rare genetic diseases and all sorts of weird random conditions that most people do not have. She tested negative for all of them. And that's when we started to wonder if it was TSW that was actually going on.
Jennifer: And I've talked about this before, that was a light bulb moment for me and then also watching her go back to dermatologist, trying to advocate for herself only to be handed more topical steroids, despite her insistence, that that was actually making it worse. So, I want to be clear. We're not having this conversation today because you guys know, who are listening, I'm not anti-medication, I'm not on anything. Everyone's journey is different. So, it's important, but we have to acknowledge the reality for those who have stepped into this.
Jennifer: You basically crossed a line that your body can't just jump back into the place where it was before. It becomes really, really daunting and emotionally, it feels like a wrecking ball, even worse. Like your life was already not in a great spot and now this is even worse. And so, for you, what made you think about… Were you interested in counseling before your health went to this space, into the TSW space? Or is this something that you have realized with experience is so important?
Jing: So, I've always been interested in being in a helping profession since I was a teen, I naturally gravitated towards social work and counseling. And in university I discovered that there was a bachelor degree for social work. So, I went into that and I started working as a social worker for two years after I graduated. Unfortunately, because of TSW, I had to stop that. I was out of a full-time job for years. I think even three years I had to stop working full-time because when I was traveling to work, the air conditioning on the bus was so painful, when I was at work, the air conditioning at work also made my dry skin so dry and painful. And of course it was a front facing job.
Jing: I had to talk to clients who are not feeling the best, they themselves are going through a difficult time in their lives. So, I was also absorbing a lot of stress and negative energy, which of course we know affects your skin greatly. So, my TSW got even worse while I was working as a social worker back then. But counseling and helping people has always been a core belief or core value of mine. I really enjoy doing it. And I would say that going through TSW has helped me become even more effective as a social worker or a counselor, even though I was technically not even working for that three years when I had to take a break.
Jing: I think funnily enough, when I was a social worker, or when I was studying to be one, I always never knew what my specialty would be. I always wondered, some people really love to help the elderly or the youth, and I never knew what mine was. And I feel like now, after going through this for so many years, it's just TSW and I feel like it gave me my calling or my purpose.
Jennifer: That's really a beautiful. It's interesting because sometimes you can take the thing that has caused you so much grief and strife and pain in your life and turn it into a blessing, especially to help other people and help walk them through it. And the reason I reached out to you is because I do have clients that are in the process of going through TSW and are not in a good place mentally and emotionally. And one complaint that I have repeatedly heard is that they don't feel heard or understood by a therapist who doesn't seem to understand this particular situation, because there are some unique aspects to it that require you to explain things that are not common. They're not common experiences.
Jennifer: So, for someone listening to this, do you have any thoughts on why it is that TSW and this could be whether both from your personal experience, also from your professional experience, working with people. Why is it so difficult for people who are going through this mentally and emotionally? What do you think is contributing to this overall sense of like, “I don't know if I can actually get through this.”
Jing: I would say, firstly, it's the stigma because once you see it on a person, skin condition, you can't hide it. And there are many, many misconceptions of skin conditions, no matter TSW, or eczema and all that. And when people can see it on your body, it's almost like an open invitation for people to comment. And not everyone is the most sensitive or know what to say to TSW people. So, firstly, receiving such comments builds that stigma or that impression. And I think to break that stigma on top of all the emotional burdens they're already carrying is really, really tiring.
Jing: So, having to explain and then be invalidated by onlookers, I think that is a very, very heavy thing to carry around. You feel very, very alone and that the isolation can really cause someone to go berserk. And I think the second thing is you lose all aspects of yourself. It is not just one type of grief that you are going through, you grieve your appearance firstly, your appearance affects your personality, your character, all your core beliefs. You can't carry yourself in a way that you want to carry yourself. Our appearance actually really makes up a huge part of our personality that we dress up the way we want to dress but TSW people are locked of that.
Jing: Makeup, hair, anything that shows you to be you, you kind of feel like almost identity-less. And in fact, sometimes you even want to be invisible because you don't want to invite all these comments from other people. And then next thing you lose is your job, which also contributes to your identity. Maybe even relationships where friends, don't understand why you are coping yourself up at home. They think that you do not want to be their friend anymore so you lose relationships. And because of all these, you start to question life, you lose you purpose because you can't do anything.
Jing: And life is all about enjoying activities, feeling on your time. So, then you started going through this very existential space, where, “Who am I? And what am I here for? If all I am doing is suffering, then is life worth living. There's nothing that I can even enjoy anymore not even wearing nice clothes, not even eating nice food, not even spending time with my friends. So, what is keeping me here? I really do not know.” So, that is when they really go into this deep, deep hole that is really hard to climb out of.
Jing: And now it doesn't help when you do not see many success stories. But I always say that you always have to cling on to hope because that keeps you going. I always say hope is like a double-edged sword. When you have it and you're disappointed that can really crush you, but when you have it, you're living at a day and who knows what the next thing will bring.
Jennifer: Can I ask you, do you think that people generally speaking, going through this would benefit greatly if part of their journey was in addressing the mental, emotional piece of this, because what you've just described, I mean, even just listening to you that breaks my heart. It breaks my heart to hear how many things you're stripped of, that you're right, make us who we are. So, do you encourage people within the TSW or Topical Steroid Addiction communities, do you encourage them to seek out mental or emotional support and to work in that area in addition to everything else that they're doing?
Jing: Definitely. I feel like mental support or mental health is almost like half the battle, because if you do not have the right mindset, you could spiral down very, very easily because mood also affects our flares. Stress doesn't just mean like physical stress or like feeling stress from work, it is also emotions, large emotions like feeling depressed that lowers your immunity and the immunity affects your skin health. And then of course TSW is so related to the entire system. So, definitely please seek out mental health, especially if you already are struggling to see any hope.
Jing: I usually also find that people with a strong family support they heal much faster as well. If they are active in the community, they are open about their TSW and are able to talk about it. They also tend to have a faster healing rate, but of course, stepping from being afraid of showing yourself to being in the community and identifying as a person with TSW and being able to accept that I do have TSW now, that is a huge jump that many people are unable to take or don't feel ready to take. I myself took eight years of being in TSW before I wanted to set on my Instagram account, my Facebook account and share it. But that really accelerated my healing and my entire mental health.
Jennifer: With that said, and I actually really appreciate the idea of being able to share your journey as potentially therapeutic. I think that's one of the benefits to the internet today. I mean, there's good and there's bad things about the internet.
Jing: Definitely.
Jennifer: Being able to connect with people elsewhere because it is possible, you may be the only person in your town that's going through this. And for miles and miles and miles, it may not be a single other person or a soul who understands what you're going through. But thankfully for the internet, you're able to connect with people. So, how, if you say, join a Facebook group or what have you, there are highs and lows to that. There's good things and then there's bad things because there's this range of emotion that people experience going through this, which you've discussed. That you got angry, you feel grief, you feel all these things.
Jennifer: So, do you have any tips for someone who maybe hasn't sought out professional help yet, but they are also, as you said, you have to be careful of learning how to cultivate a healthier mindset and not allow yourself to become so susceptible to these emotional highs and lows that you may necessarily see online that can cause a lot of disappointment or fuel anger and whatnot. So, do you have any recommendations for someone about what are some things that they could do now? Whether it's, should they join a Facebook group or if you do be careful about this. I just want to help people manage their own expectations because I think sometimes it's great to connect with people, but I've also heard on the flip side, some of my clients and community members have also found that some of these groups can be kind of negative and it actually makes them feel worse. So, what do you recommend?
Jing: I think I use my social media very differently from most people.
Jennifer: You do, I agree.
Jing: So, I don't respond to many negative comments or I don't pay much attention to it. So, I curate my Instagram feed very, very carefully. I followed lots of positive quotes or inspirational quotes. And I think half of my feed is that. I don't follow many people, only people that I've talked to on DMs and they gave me a really positive vibe and then I follow back. And if I see anything negative, I would just be like, “Okay. Is this accurate? Or does this really affect me?” If it doesn't then I'll just let it be, I'll unfollow that person or pay no heed. So, but I understand this mindset also take some time to cultivate, especially at a start when you don't know what is working for you or what is not.
Jing: And I think the main grounding principle is trust your body and trust your gut. So, guts can be inaccurate, information online can also be into inaccurate, even whatever I'm writing who knows it could be accurate or not because TSW is not studied clinically. So, do what you feel is right for your body and learning how to listen to your body is also something that is a skill. Like how do I know whether I'm reacting to something because I'm allergic to it or because, now I feel like TSW is an exercise in understanding your body. Like let's say you have a flare, “Okay, is this caused by what I ate just now? Or is it from someone else or every turn or whatever.” So, yeah, I think just cultivate this skill for yourself, always trust your gut feeling. And if something is triggering you move away from it and examine your own emotions. I think that is a good practice to have.
Jennifer: Do you recommend that doing like journaling or writing exercises can be helpful for people going through this?
Jing: Yeah, definitely. I would say I often type into my phone every time I had a lot of thoughts and emotions to express because I couldn't write with my hand. So, I typed it out or I would send voice notes to myself. I would just record myself saying it out because when sometimes your throat chakra is blocked and the voice of expression is stifled. Like TSW people, we already have difficulty speaking of ourselves, we all have difficulties with being invalidated. So, when we practice our expressing with our throat, it continues to reinforce our own self-beliefs and our self esteem. So, I think it's helpful to write it out, read it back to yourself and associate and hear it back.
Jennifer: I actually really appreciate your recommendation for self reflection and that evaluative process to say, “Is this true? Is this a reaction to something?” I have found too that this is something I remind people of TSW and all the other different, like we have red skin syndrome and TSA and all these different names for essentially the same thing. There is no official diagnosis, not in the United States, not in the United Kingdom. I don't know if any country's medical system actually, as of the date of this recording acknowledges this as a diagnosis. And you're right, there is so much that we don't know, unfortunately, from a science, medical, biochemical perspective, that is still evolving.
Jennifer: And so, I agree with you wholeheartedly that you do have to learn how to trust yourself, but also to know that what might not work now, it might just be right now, it may be that down the road, you will be able to reintroduce certain things and get back to certain… I mean, for you, I saw, I think this morning or yesterday you had a post up on Instagram about dressing up, which you said was something that you couldn't do for a long time. Can you talk a little bit about that transformation of going from a place where that was just not possible for you on many levels, but now you're able to do that?
Jing: Yeah. I was wearing the same thing for a long time because of TSW. I had zero fashion. I would be caught by the fashion police if they existed. So, I wore long sleeve cotton tops all the time because I roll all these skin and it was painful to expose them and all kinds. I wore a kit every time because I hit my hair was basically bulk. And then as my skin got better and better, I could expose more and more parts of my skin. So, I slowly transitioned to wearing short sleeves and just checking in with how I feel on that day. Maybe if it's a day that I only have to be out for two hours, I'll wear short sleeves. On longer days, I wouldn't, because maybe I would feel uncomfortable by it, like the third hour.
Jing: And then the next time I would be, “Okay, let's try shorts.” So, I feel like it has to be a very gradual thing. Many people once they see a ray of hope that, “Oh, like finally my skin is better.” They go all out, like suddenly from long sleeve tops and pants to like a spaghetti top and shots, but that may not be giving yourself enough time. And also it could cause a lot of disappointment if it doesn't work. So, I think transitioning slowly and having patience with yourself is very, very important.
Jing: And I always loved dressing up even, I mean, before TSW. Say it was really nice to get that with my enjoyment back, but I no longer, I'm insecure. When I wanted to dress up in a pant, it was because I was insecure. But now it's because I love and appreciate my body. I just want to feel good about myself. I'm not doing it for anyone else. It's not out of any judgment from society. So, no, I would say pacing yourself, being patient with yourself and also self acceptance. I had to work very hard with accepting that, “Okay, I have TSW and this is just how I look right now. And that is fine.” And once you reached that stage, then you wouldn't be rushing into going back into that normal life.
Jennifer: So much wisdom. So much wisdom whether you're in TSW or not, that is so much wisdom there. I want to make sure that people can connect with you. You are on Instagram at TSW_trooper, and then you also have a great website called decodingtopicalsteroidwithdrawal.com, is that the best way, if someone is looking for support, and you and I discussed this ahead of time, so I think it's okay for me to say this, that you do offer counseling services for people who are going through TSW, no matter where they live? So, someone could be here in the United States, they could be anywhere and they could connect with you and set up time to work with you.
Jing: Yep. Correct. So, I have a link in my bio on Instagram where you can book time slots of me. So, there will be… And you will see it in your time zone so that's convenient. I do them over Zoom. So, it could be anywhere, anytime, it's not restricted at all. And I really enjoy these sessions with people all around the world.
Jennifer: I love that. I love that you are offering this service because I think it could be such a benefit for so many out there. And that's why I'm just so glad to have had you on the show to share your story. We'll make sure to, I know it's in your linking bio, but for those who don't use Instagram, we'll make sure to also put Jing's link so that if you do want to schedule time with her, it's really easy. Everything will be in the show notes. That way you can just go through there. Jing, I just want to thank you so much for making the time to coming on the show. I know that it's pretty late there for you, and I just deeply appreciate your commitment to helping people through this. And it's just been such an honor to have you on the show.
Jing: No, I'm honored to be here. Thank you for having me. I really, really appreciate it.
