Topical Steroid Withdrawal (TSW) can cause chaos in the body. But it can also begin to affect one's emotional health, as well as their relationships.
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My guest today, Kathryn Tullos is a Registered Nurse from Houston, Texas with a degree in Communications.
She is a wife and mom of 4 kids – ages 14, 12, 10, and 9. In mid-2013, her son suffered severely from Topical Steroid Withdrawal Syndrome (TSW) for 18 months, due to steroid creams prescribed for his eczema.
Kathryn threw herself into patient advocacy to try to help others navigate this often misunderstood iatrogenic disease. She joined the ITSAN board in 2015, helped write and relaunch the ITSAN website, and eventually became Executive Director.
She stepped down briefly in 2018, but she couldn’t stay away for long. Kathryn returned to ITSAN in October 2019 as President and CEO.
Join us as we discuss loss and trauma associated Topical Steroid Withdrawal Syndrome (TSW).
Have you experienced loss or trauma as a result of TRW? Let me know in the comments!
In this episode:
- What do people feel like they're losing as a result of Topical Steroid Withdrawal (TSW)?
- How to prepare before and after recovery
- How to handle it when it feels like no one understands what you are going through
- Can therapy help?
Quotes
“I think that we really underestimate the emotional toll that it takes on relationships during and after recovery.” [6:15]
“I think another misconception is when you're better, then everything goes back to normal and everything goes back to the way it was. And everything has shifted. Everything is different now. It's a totally new normal.” [16:27]
Links
Healthy Skin Show ep. 132: What is Topical Steroid Withdrawal? w/ Kathryn Tullos
Healthy Skin Show ep. 029: Is Trauma A Root Cause For Your Skin Rashes? w/ Dr. Keesha Ewers
Healthy Skin Show ep. 156: Recovering From Topical Steroid Withdrawal w/ Briana Banos
Healthy Skin Show ep. 096: Topical Steroid Withdrawal (A Personal Story) w/ Louise King
Follow Kathryn on Facebook | Facebook | Instagram
162: Loss + Trauma Associated With Topical Steroid Withdrawal w/ Kathryn Tullos FULL TRANSCRIPT
Jennifer: Hi, everyone. Welcome back. I am joined today by a recurring guest. Her name is Kathryn Tullos, and she's a registered nurse from Houston, Texas with a degree in communications. Now you might remember her name because she was previously on an episode where we talked about topical steroid withdrawal. And she's a lot of experience with this because she has four kids, she's married and in mid-2013, one of her sons suffered severely from topical steroid withdrawal for 18 months due to steroid creams prescribed for his eczema. Kathryn threw herself into patient advocacy to try to help others navigate this often misunderstood iatrogenic disease. She joined the ITSAN board in 2015, helped write and relaunch the ITSAN website and eventually became executive director. Though she stepped down briefly in 2018, she couldn't stay away and she returned as president and CEO of ITSAN in October of 2019.
Jennifer: Kathy, thank you so much for having this conversation with me again, continuing to talk about not just topical steroid withdrawal, but I think today I would love for us to focus on the repercussions that can happen in your life around kind of the loss that many people feel. And I've heard expressed from clients as well, but thank you so much for being here to have this conversation.
Kathryn: Oh, thank you for having me. This is an important topic.
Jennifer: It is. So let's talk about that. Loss comes in many different ways and for those who may or may not remember, topical steroid withdrawal is basically where you've used topical steroids for a period of time. And depending on your particular system, depending on the potency, depending on a number of factors, your body essentially becomes addicted to the steroids and acts in a way that is, I would say to some degree, life-wrecking and how long that period of time you experience will vary based on a number of different factors. I don't even think anybody really understands why someone might go through TSW in a period of months, whereas other people are still dealing with it up to five years later. So can you talk to us a little bit about some of the things that people, in some of their worst moments feel like they're losing as a result of TSW?
Kathryn: Sure. Wow. There's so much loss associated with TSW and I really appreciate you bringing up this topic just so people can prepare, because I think this is something that a lot of us who went through it did not see coming. I think a lot of the loss comes even after you're healed, oddly, because that's a lot of the time when you have time to process what just happened to you because the whole time you may be kind of in kind of like an emergency mode, right? And so physically you lose a lot of your identity. I know for women in particular, the loss of hair, it's not just losing your hair, it's kind of losing your identity.
Kathryn: I mean, I remember one of our members was talking about when she first started losing her hair and she just couldn't bring herself to cut it. And she was looking at herself in the mirror and she said she compared herself to Gollum. She said, “I looked like Gollum. I looked just hideous.” Her hair, so it was just like, it was the saddest thing to feel like that when normally this person was beautiful and that was part of her identity and having to cut that hair. And my son also lost hair, but he was four and he's a little boy and I really don't think he noticed because we buzz cut him. But for teenagers, especially and adults, it's rough.
Kathryn: And then your skin, excuse me, it's so raw and painful. So you're self-conscious about how you look, but then how it feels too. You can't have people close to you like you used to. Even a simple hug or holding hands or different things become painful. So it's very isolating. And not only are you worried about how you look in public and things like that, but a lot of people physically cannot leave their homes. And so the isolation is even more. And then they lose relationships, even just regular friendships. Maybe people don't agree with the path you're going down or they think, yeah, you're like this because you stopped treatment.
Kathryn: So there's a lot of, kind of like friction in just your everyday relationships. Romantic relationships take a huge hit because you're no longer the same person and that maybe in your relationship, you were the person that kind of held things together. Maybe you plan the fun things to do. Maybe you're kind of the caregiver and now the roles are reversed and a person who was never a caregiver and never, maybe that's not even a skill set for them is expected to give this care. And it's a real role reversal.
Jennifer: So Kathy, in you saying this, it makes me kind of wonder as I'm listening and thinking, what would someone who's listening to this think. Is it fair then to potentially prepare yourself for becoming someone who if, depending on where you are with this, that you may be quite ill for a while?
Kathryn: Yes. Yes. I think you definitely to prepare. We do try to help our members prepare to be out of work, prepare financially, prepare to be out of school. Maybe for a little ones, getting a 504 Plan, things like that. But I think that we really underestimate the emotional toll that it takes on relationships during and after recovery.
Jennifer: Yeah. And let's talk a little bit about the work piece. I've noticed that with at least some of my clients, it becomes a real challenge a lot of times, for them to continue working at the capacity that they were. Sometimes they'll try and see if the boss will let them stay home and work from home, but even that can sometimes be challenging. So for somebody who's listening to this and is starting to get really nervous, because they're like, I don't know how I'm going to keep juggling all these pieces. What do you have to say to somebody as far in terms of work? What would be some suggestions like A, let's manage expectations because I think that is one of the most critical pieces to any health problem you have, but especially this and then B, are there options for you to be able to get some downtime away from work without being, I don't know. I mean, do you end up really losing, do people really lose their jobs entirely? Should you mentally be prepared for that?
Kathryn: Right. I think that there's a lot of different ways to prepare. I would say prepare for the worst. Expect the best, try to be positive and use what you have, but this is a very real possibility for people that they may end up homebound or bedbound, right? And so there are some… Some people can work from home. Some employers may allow you to do that. Your job may lend well to that. Like right now we're seeing in quarantine, some people can do work from home and some people can't. And so it's a really kind of similar situation there. But even with that, sometimes there's just like a brain fog that goes with this. There's depression and anxiety. You may just not be able to handle even at-home working situation. So you need to prepare for that.
Kathryn: We do also tell our members to look at FMLA with your work, the Family and Medical Leave Act, which usually if you have a condition, they have to let you take, I believe it's 12 weeks off, three months off. Some with pay, some without, but they can't fire you by law if you have to take medical leave. And so for some people, three months is the very worst of it and then they can kind of get along after that. Some people it's nowhere near, they're nowhere near healed by then.
Kathryn: But a lot of people who must work and that's a lot of people will try to go like a different route medically. Some people will just go off everything and just say, I'm going to go through this with no medication. And if you can do that and you have the support system, we don't judge how people choose to go through TSW. But a lot of people do have to go on immunosuppressants or different things to help them calm down the immune system, at least for a little while. And some it's up to you and your doctor, but there are alternatives if you have to go through this. There are a lot of medical interventions that you can go through. Even with that, I think you prepare for a difficult road, right? That's protracted, that's our worse and it's a period of time.
Jennifer: Yeah. And I think months to years, I think that piece of it is one of the hardest pieces I think for people, because you just don't know when it will end. And we'd like to will ourselves into getting better, but we can't will the adrenal glands and the immune system and everything to just start working correctly. There is no silver bullet or a magic potion unfortunately. There's no supplement, there's no drug even that's going to correct it. And I think that what's equally frustrating. For somebody that wants to do say family medical leave, or I would assume some people end up maybe even on disability, is it a challenge because TSW is not technically at this point considered a medical diagnosis?
Kathryn: It is really difficult because there's no, I guess you'd say like an insurance code, right? Is it ICD-10 now?
Jennifer: Yes, ICD-10 codes. Yes.
Kathryn: Right. And so that's something that we're really trying to push for. We're currently trying to get our members to report side effects to the FDA to get labeling changes because at least they'd have a leg to stand on. If a doctor or a patient sees this on a label, then they at least know what to expect when this is happening. Okay, then that's trickles, it's like a cascading effect to everything. And so then insurance companies get on board and you get the code and then you can get disability.
Kathryn: FMLA is a little bit easier because it's easy to see you're unwell. The disability is harder because if you have a known disease, then they know what to do with that and they know how long that takes. And there's so many unknowns with this. And so it is a lot harder and we're trying to advocate to make changes with that. But yeah, I think that people will see it is a challenge. And so you need to get a practitioner on your side who can write this up for you when you're applying for aid and for disability that you're too unwell to work.
Jennifer: And it sounds like you probably your best bet is you probably want to start working on both at the same time, but make sure that you can get the FML, family medical leave. You can get that in place initially, at least to have some peace of mind.
Kathryn: Right.
Jennifer: And so I want to transition and talk a little bit about personal relationships because… And I also should preface this whole thing by saying, look, we're not trying to scare anybody who doesn't have topical steroid withdrawal, but you should be aware that there are some pretty big consequences if you do end up here. And for those who are going through this right now, or have this constellation of weird symptoms that you're like, my doctor thinks I have some weird genetic disease, but they can't figure out what it is. And I was taking all these steroids.
Jennifer: Go back and listen to the first episode with Kathy. I'll link that in the show notes. That way it's really easy to find that way that might help you piece a lot of this together, but then understand that this is a necessary component of what life's going to look like moving forward. It's not necessarily forever, but there are lasting impacts. And I think what we all want to think as we can just like cheerlead our way through it, but I can tell you from talking to a number of clients who have TSW, there comes a certain point when cheerleading starts to get real old and you're like, when is this ever going to end? And you start to see cracks and fractures in your relationships, especially close ones.
Jennifer: So let's talk a little bit about that. There is a lot of loss that can happen as a result of this. And you had touched on that friendships, marriages, close relationships, people close to you may not understand what you're going through. And I'm sure, you're in those boards and forums and everything with your members, have people been told by relatives even that you're crazy, this is all in your head.
Kathryn: Very much, very many times. It's very common. I think, especially when you're not in it, it seems like an easy problem to solve. Have you tried this? Have you tried that? You get pelted with all of this. And in my experience, people who come down this road, they have come down this road because it's the only road there is left. Right. They've tried everything else because when you see what is possible with TSW, of course you're going to try everything. The only way out is through with TSW. And so you're going to try everything else before you have to go through. Right?
Kathryn: And so I know for, this is one of the strains on marriages, especially is if the in-laws don't agree with what you're doing. So maybe one parent has been really researching and really feels strongly or one, not necessarily a parent, but a partner really like this is what is going on and this is what we need to do. And then you have all of these relatives and parents weighing in and kind of pulling you away from that. And so what I would say is from the beginning, you need to plan to go to some type of counseling. From the beginning, put that in your action plan and just go from the beginning, even if you feel like, Oh, I'm okay now I don't need that yet. You really do.
Kathryn: There's so many things that I felt like I just couldn't see, because all I could see was caring for my son. And we were just in crisis mode. Right. And it was kind of like when my husband and I got further into crisis mode that I'm like, Oh, now we need help. And now let's go to therapy. And it's like, we needed to go away before that. And then I started going for myself. I think another misconception is when you're better, then everything goes back to normal and everything goes back the way it was. And everything has shifted. Everything is different now. It's a totally new normal. When you hear that phrase, it totally is. Nothing goes back to normal. None of the dynamic of the relationship is the same. There may be a lot of resentment for how things went down that you had no capacity to process in the moment because you're just in crisis management.
Kathryn: So there's just a lot to deal with after the fact. So what I would advise is just make that part of your care routine is get into therapy right away. And there's a lot of ways of doing that from home. If you're too ill or if your skin is too bad to go into an office, you can do that from home on the phone or Zoom or Skype. There's a lot of different options, but expect that because it's real.
Jennifer: And Kathy, and what type of like, and maybe I'm overthinking this, I don't know, but I'm wondering like what type of therapy, do you look for a type of therapist that specifically understands skin issues or you're just looking for somebody talk therapy? What kind of therapy are we specifically going to look for?
Kathryn: For me, what I would suggest is someone who understands trauma, so they don't necessarily have to understand your specific medical issue. It would be helpful. You can try to educate them so they know what you're going through, but I think trauma because it's traumatizing and after the fact it's post-traumatic stress all the way. I know for me, my main issues with anxiety came when my son was well, and I did not see that coming. When he was well, and I knew he was safe, then I could fall apart. And during, I didn't have the space to fall apart and worry about me completely fell apart. I think decision fatigue, right, where I'm just reading and making all these decisions. And it's very important decisions that affect his wellbeing, that could affect his life. So it's very, it's not exaggerating to say you're making life and death decisions for yourself or for the person you're caring for.
Kathryn: And there's so much pressure that you're under. If your partner is just hearing the things you've read and they're not reading themselves, and they're just taking the advice that you've given, then you feel so much pressure there because they're just agreeing with what you've heard and what you've learned. And you don't know if you learned and heard everything right or all that there is. And you don't know if you're making the right decisions. So there's just a lot.
Kathryn: So with the decision fatigue, I remember when my son was better and I was grocery shopping and I'm looking at, I don't even know what I was in, and I was looking at everything and I was just completely blank. I have no idea what I need. I can't remember anything I've ever cooked for dinner. I can't remember. I just can't make any choices. And I felt like I was going to have a panic attack and I had to leave. And so for months, my husband, he worked his full-time job. He came home, he'd write down all the grocery list. He'd go shopping, he'd come home and cook it. He did everything. He had the laundry and the dishes and all of it. And I was just like, I can't. I was totally nonfunctional. Couldn't do it.
Kathryn: And so I was going through therapy, processing this trauma. And I remember like late at night, sometimes I'd just hear one of my kids get up to go to the bathroom, I'd hear a door open. And it was just like, I'm right back in that place because in times past it's like, what new fresh hell am I going to see now? It would be just like I'm waking up and my son would be standing by my bedside and I reached my hand out and I just feel, I mean, gore is the only way to describe it. And it's just like when that's what you're expecting, even though you're not in it anymore. It's almost like a muscle memory that you're expecting the worst all the time, because you've been traumatized.
Kathryn: And I just always felt like I needed to be alone. I can't deal with anyone. I can't deal with anything, any kind of decisions. It was a really rough time. And I think what made it kind of harder is people trying to be very supportive, who cared about me. Like, “Oh, now he's all better now.” And now life's tied up in a nice, neat bow. And now everything's great. And even the advocacy work I did, and now it turned into this great positive thing, because now you can help other people. And I'm sitting here thinking I don't want to help other people. I wish this never happened. I don't want any of this. I would never have put my son through this to help anybody. I mean, I hate saying that, but it's true. To help other people, I would have never chosen any of this. It's not a nice, neat bow. I'm a total nuts.
Kathryn: And that I would feel kind of ashamed about that. Isolate more, not reach out to friends, just kind of stay home. And this is, I mean like years and putting on weight, which I'm still dealing with. It's just a lot of different coping kind of goes in to trauma. And I feel like going to therapy helped me work through a lot of that. Something I thought with therapy was that I will work through this problem and then I'll be back to how I was, and that's not the case. Or when my anxiety goes away, then I'll be able to go jump back into life. And something I've kind of learned is sometimes this doesn't go away and you just have to learn new skills, how to push through the new way of life, the new way things are.
Jennifer: And I think it's important to just also really be clear here. You did not have TSW. You supported your son and you experienced this. So I think it's important to remember if you're a partner who's listening to this, a mom, a dad, brother, sister, or you yourself are going through this. It is a wrecking ball through many lives. It's not just the person it impacts directly. And I appreciate you clarifying too that someone who specifically deals with trauma, because I can understand now hearing you talk about this why someone who deals with trauma and understands trauma would be so important.
Jennifer: And I'll also say this, for anyone listening to this who does not have TSW, doesn't know anybody with TSW. I think there are a lot of people out there, even if they just have eczema or psoriasis or whatever very badly. And you, as a result of that have experienced a tremendous amount of trauma as well, just from your own particular skin issue. While you might not have the same experience, this should serve as a reminder of why getting support, emotional and mental support during any period where you are really emotionally struggling is so critical.
Jennifer: Because you're right, no matter what issue people have gone through in this community, if they've gotten to the place where they're afraid to go out, they're not reaching out to people. They're getting increasingly more isolated, depressed, anxious, et cetera. If we don't work on that, if we don't allow ourselves that space, almost like a gift to say, I got to process this. I need that space. I'm going to give myself this space to do it. We keep carrying it with us. It's never… Like I still, I don't worry about my hands as much anymore after having eczema, but as soon as like, with all of this stuff going on right now and I had to start washing my hands, I was like, “I can't do this.” Just that alone was triggering for me because of my path. Like I, all of a sudden started imagine, Oh my gosh, my hands are going to start burning. They felt like they were on fire just from water. And I became afraid of water, excuse me.
Jennifer: And so I think this on a grand scale, this is so much worse than what many of us experience on a daily basis, if you are still in the midst of dealing with any type of skin rash. But if you go to this extent, that's why this is so important to manage the expectations, to be very realistic, get the support. And the other thing too is that if anyone is interested, I mean, so your website, itsan.org, so I-T-S-A-N.org, but you also have Facebook groups as well, a Facebook group that people can join to get some level of support and start maybe digging through some of this information. And you have a lot of great information on your website as well. Correct?
Kathryn: Right, right. And we are continuing to add more. We're updating our website all the time. And in the future, we're hoping to add a forum onto the website for people to connect with one another. I think also, just going back to the previous topic, I wanted to add that. So I was going through all of this and I was getting therapy while my husband would come with me and we would do couples therapy as well. And then I think I would suggest for your partner to also have their own individual therapy, because there's a lot. I was a main caregiver for my son, but in a way it's like my husband is a caregiver for me, right? And so there's a lot on him too.
Kathryn: And then my son, he was so little, I really thought a lot of this was forgotten, but as he's gotten older, there's things coming out and it's all related to this timeframe where he's going to need help to process also. He has a lot of anxiety that I know comes from that timeframe where he was not in control of how he felt or even what was done to him, the things that we're trying. And I can only imagine, and my heart breaks thinking of it. And we're trying these creams and these salves and baths and additives and things, and it's just hurt so bad and he's not in control. And so that comes out, it comes out later. Sometimes it may take months or years for that part, but just to prepare your whole family and support system for like, this is going to be a big deal maybe in the moment, but after too, you have to prepare for all of that part, all the repercussion.
Jennifer: Yeah, absolutely. I must say, Kathy, I really appreciate your… I mean, it takes a lot of bravery. I know you're the face of ITSAN right now, but even still just to share your personal story and what you've gone through takes an incredible amount of bravery. A lot of people are not comfortable sharing all of this stuff. And I think everybody listening to this will be and is as they're listening deeply appreciative of your commitment to helping other people. You're right. Nobody choose. Like you would have never been like, “Oh yeah, I want my son to get really sick so that I can support.” No one wishes any of this, but you have done a tremendous thing. And the work that you're doing is helping people.
Jennifer: And so I'm glad that we've been able to partner together so that we can get the word out and help support people who are going through this to hopefully help get some answers and find a community that can really support them because as you said, this is a lonely long road. And anybody listening to this too, if you know anybody who is going through this, has really weird symptoms or is really struggling, please share this episode with them, share ITSAN website with them so that they can get the support that they need and hopefully connect the dots. But Kathy, thank you so much for joining us. I really appreciate it.
Kathryn: Thank you so much for having me. Thank you for raising awareness on this and helping support our community.
Jennifer: Absolutely.
