This is a guest post from Nina Ajdin, a fellow topical steroid withdrawal expert, through personal experience. She has been going through TSW for ten years and I’ve learnt so much from our friendship. I first saw Nina on the Preventable Documentary – a brilliant short film about TSW. in this blog she shares what it’s like to still be going through TSW after ten years…
It’s hard to believe it’s been ten years since I started my journey of Topical Steroid Withdrawal (TSW). When I first found out about TSW and made the decision to stop using topical steroids, I had no idea what I was getting into. I never thought it would be a decade-long battle that would test every ounce of my strength, patience, and hope.
As my ten year anniversary approaches and I reflect on my journey, I’m reminded of the darkest days when hope was nowhere to be found, but also the experiences and times when hope was rekindled again, and refueled my spirit and soul.
The Beginning: Filled With Hope
When I started TSW, I was filled with more hope than I had in the decade of my life prior to that. As my skin continued to worsen while using topical steroids for 14 years, the rest of my body did too. By the end, right before starting TSW, I was even having seizures multiple times a week. I also found myself admitted into psychiatric inpatient 3 times within 3 months for severe suicidal ideations. I felt I had no more strength to go on with life and saw no way out … that is, until TSW.
I knew TSW was the answer as soon as I learned about it. While I knew it was going to be difficult based on the research I did, It was my light at the end of the tunnel. The thought of there even being a possibility of healing one day fueled me. I grabbed a box, labeling it “garbage”, and put all my steroid products I had in the house, from creams to drops and inhalers, and even prednisone pills I had been taking on and off for 8 years.
Little did I know, the road ahead would be what I imagine hell would be like, if it did exist. Dealing with the never-ending itching, burning, and sleepless nights was exhausting and took a toll on me. The initial months were the hardest, but somehow I was still able to hold onto the hope that healing was still happening and coming for me any day. I clung to the idea of that and hope like a lifeline.
When Hope Started to Fade
As months turned into years, and I continued to cycle through unbearable flare ups, hope was harder to hold onto, and the reality set in. I watched as others shared their stories of healing in a year or two, and I wondered why my path was so much longer and harder. It was during these years that hope suddenly became a fragile and elusive thing – something I could no longer grab onto like I used to.
Through the trauma of going through TSW for so many years, my mind, body, and spirit all felt like they were shutting down. Suddenly, I was too afraid to go out anywhere in public, even being scared to just go outside at all. I isolated more than ever in my life, and I was so terrified of anyone seeing me and my destroyed and broken body. For many years, my parents were the only people who saw me. Human connection of any kind, especially human touch, became completely foreign to me.
I hit rock bottom more times than I can count in my life, but at that time, I felt like I was lying right down at the bottom, with no desire or strength to get up.
The mirror became my enemy and greatest fear, reflecting a face and body I didn’t recognize as my own. A face and body torn apart by TSW. Social events and human connection, once something I enjoyed, became terrifying, and isolation felt safer. The frustration of slow progress was eating at me, and there were days when giving up seemed like the only option. But even in my darkest moments, somehow there was a small, stubborn spark of hope that refused to be extinguished.
The Turning Point: Finding Strength Through TCM & Emotional Healing
In my fifth year of TSW, thanks to ITSAN, I started working with Dr. Olivia Friedman from amethyst holistic skin solutions. Olivia is a TCM (Traditional Chinese Medicine) practitioner who specializes in dermatology, and who, by now, I consider one of the few experts on TSW. I was at an incredibly low point when I discovered she was open to working with me, and to my surprise – lived about 5 minutes away from me.
When I started TCM treatment with her and got my herbs the first time, she came over to meet me in person, and I drank my first cup of herbs with her. Any kind of doctor doing that and truly showing they care was completely foreign to me. I was pleasantly surprised, and that alone gave me some hope again. While I wasn’t fully sold on the herbs actually working for TSW yet, after trying so many things and not seeing major improvement, it was incredibly helpful just having someone like her in my life who I could turn to, and who believed in me and my healing, especially when I didn’t believe in myself.
As I continued the treatment with her, and started to see improvement – first in my energy and mood, and eventually with my skin, my hope started to restore even more. I went from feeling like I couldn’t go on anymore and not feeling like I had any strength, to once again seeing and truly feeling that it was possible for me to get better and heal. Olivia and TCM rekindled my passion for life, and that gave me the fuel to keep going.
As Dr. Olivia Friedman put it, “It was a real privilege to work with Nina. Each time we met, I could see the light behind her eyes grow brighter. Little by little, her interest in participating in life expanded. Watching her transform really crystallized for me the extent to which TSW impacts not just someone’s skin, but their entire being and their ability to function in the larger world. It was and continues to be very rewarding to watch patients get their lives back when they respond well to TCM.”
Although TCM did help me tremendously, it didn’t magically just cure my skin or mental health. However, it gave me the strength and space to be able to truly begin working on my own healing more. This meant going back to regular therapy and even starting hypnotherapy to dive deeper into trauma recovery and emotional healing. TCM helped open the door for that, as it showed me how everything is truly connected. How the mind, body, and even spirit are all interconnected and there are so many different factors to take into account.
I began to realize that healing is not a linear process, and that there are many different stages we go through on our healing journey. Comparing my journey with TSW to others, as hard as it can be at times to accept that my journey has been longer than most, is completely counterproductive and hurtful. We are all so different and have different individual needs and experiences, and there are so many things to take into account when looking at this.
The Later Years: Learning to Embrace the Journey
By the time I reached the latter half of this decade, my perspective had slowly started to shift.
I started to stop thinking of each flare up as a step backwards, but as just another part of my healing journey. I worked on acceptance of all the parts of my life – both the “good” and “bad”: I dove deeper into my subconscious through hypnotherapy and somatic work, as well as meditation, and learned more about how my mental, emotional, and spiritual well being was connected to my skin and body in general. It showed me how powerful the mind is, and how repressed trauma and emotions can be stored in the body, and even show up on our skin.
Dr. Olivia Friedman added to this, highlighting the importance of incorporating all components of healing: “There are so many books and studies that show that trauma and emotional/psychological obstacles can play a huge role in keeping all types of medical conditions, chronic. Complete healing often cannot happen without addressing the psychological and spiritual aspects that contribute to the condition. I give Nina so much credit, because it’s not easy to face what has likely been buried in our minds and to do the work to overcome our painful past. But I find that those who do the work have a much better prognosis for not just their skin, but also their overall happiness in life.”
Through doing this work, I learned to find joy in small improvements and to appreciate my body’s gradual progress toward healing.
Ten Years Later
Now, as I stand at the ten-year mark, I can say that hope has been my constant companion. Even when it felt like it was completely extinguished, that spark never completely went out.
The journey through TSW has been long and arduous, but it has also been my greatest teacher. I’ve learned to be patient with myself, to be loving and compassionate with myself and my body, and to find strength in vulnerability, instead of seeing it as a weakness.
For those who are just starting this journey or who are somewhere in the thick of it, my main message would be: Don’t lose hope. Healing is more of a journey, not a destination. While we all strive to have clear skin, and while that’s the ideal outcome, I truly believe it’s even more important to learn to have compassion and to love ourselves and our bodies at every stage – whether we have clear skin or not. Surround yourself with a supportive community, embrace the ups and downs, and trust in your body’s incredible capacity to heal. No matter what it might seem or feel like, your body is always working for you, not against you. Treat your body as a friend, and hold and speak to your flaring skin like you would a hurting wounded child. It needs and deserves all of your love and compassion, and that in itself is truly the most potent medicine of all.
As I look to the future, I carry with me both the pain and the lessons of the past decade. I know that there will still be challenges ahead, whether that be with my skin or other areas of life, but I also know that I have the strength and ability to face them.
My journey through TSW has been a testament to the power of hope, strength, and resilience. It has taught me more about myself and life than I could have ever imagined. And for that, I am deeply and eternally grateful.
Thank you so much Nina, for sharing your experience with us in such a raw and honest account. So well written and heartbreaking. Please head on over to Instagram to give Nina some support @NinaAjdin. You can also check out her new blog www.healingthelayers.com.
I wrote my own TSW Long Haul Hell blog at 4.5 years… that seems churlish now. My own skin is flaring, albeit mildly at the moment. However now I am able to work full time and am getting decent sleep most nights. Life does get better but the healing is not linear and none of us truly know what damage has been done to our skin and how fast or slow we will all heal.
I’ll leave you with one final thought, and that’s how you speak to ANYONE with a chronic condition. Never ask them, “When are you going to get better?” and please don’t say, “But you like fine..” We know we don’t and you saying that what we look like doesn’t bother you, is really not helpful. All we want is your understanding and empathy. No advice, no ‘poor you’ or ‘I don’t know how you do it’… just ask us if we would like a coffee/cake/hug and listen when we need to cry/moan/rant etc.
I’d love to hear your comments. How long did it take you to heal from TSW? Are you still healing and if so, how far in are you? I’ll start… Hi, my name is Ruth, I am a TSW-holic and it has been 5.5 years since my last steroid...
Photos
Photo of herbs on spoon by Valeria Boltneva on Pexels
Slightly off topic but have you read the pre print of a study by Dr Ian Myles and others (“TSW is an excess of mitochondrial NAD plus)
Do you have any thoughts on this, in particular the hypothesis that follicular dysfunction is involved?