In our ongoing project to raise awareness of topical steroid withdrawal, we're featuring the stories of several brave TSW warriors! The more we share our stories, the stronger we get, as we discover in this reflective and inspiring piece by guest blogger Caroline Szczuka.
For many, ‘living abroad’ is an opportunity for a new adventure and a fresh start; I remember thinking that my move to England would be a remake of the film Eat, Pray, Love, and I’d be Julia Roberts, and explore, indulge, and fall in love... my skin had other ideas!
My first four months in England were a dream! I'd just moved from Canada to start a post-graduate degree and my studies were going very well, I had an active social life, and I traveled every chance I had.
Then, January came around, and everything changed.
Suddenly, my body started deteriorating and I was covered head to toe in burning, itchy red skin. I had never been so confused or scared in my life. I did not understand what was happening to me and daily functions started to become unbearably painful. I thought of every possible reason that could be causing this full body flare: stress, allergies, weather, dust...
One day, while desperately searching the internet, I came across TSW (Topical Steroid Withdrawal) and RSS (Red Skin Syndrome). I spent days reading, researching and re-visiting the topic. I was angry and in denial that this was happening to me. I had used topical steroids and immunosuppressant creams to treat my mild eczema for approximately three years. There’d been periods where I barely applied them to my skin, so why was this happening?!
I could feel myself falling into a dark place and isolating myself from my hobbies and from the ones I loved. I would look at old pictures of me laughing with my friends and reminisce some of my favourite care-free moments, which would immediately lead to tears and self-pity. I was beyond lost. All I wanted was my old life back and a hug from my mom. I wanted to hear her comforting, reassuring words and be told that everything was going to be okay. The distance between home and England was taking its mental toll and it became an indescribable feeling of emptiness.
It took me around two months to tell my family back in Canada what I was going through. I had the idea that if I didn’t tell anyone, then no one would know and no one would treat me differently. I wanted everyone to continue thinking that I was coping on my own. I now know this was a mistake.
I quickly learned that there are two types of pain: the physical discomfort and the mental battle, which in my opinion is the harder of the two. I spent most of my second semester locked in a room, sobbing, studying and scratching. Each day was becoming harder than the last and I was running out of strength.
One day I reached out to the TSW social media community, and on that day I truly started healing. The people I met encouraged me to keep a positive attitude and taught me that asking for help is not a weakness. I received unconditional support from people I had never met. Anytime I was having a rough time I would get words or reassurance that I would heal. On the easier days, my inbox would be filled with messages of genuine happiness for my healing.
Today, I consider the TSW community to be one of my greatest support systems. There are so many people who are experiencing or have experienced the same pain so I never feel alone. I can relate to everyone while feeling heard and understood. I no longer hesitate to ask for help or admit that I am not doing okay. I cannot explain the relief I feel for not having such a ‘suffer in silence’ attitude anymore. The community is largely responsible for pulling me out of my dark hole and for putting a smile back on my face. I have grown so much as a person and have become calmer and accepting of the things that are out of my control.
Now that I am having more good days than bad, I often reflect on my 6 months of TSW. I have realized that I did in fact experience a version of Eat, Pray, Love, but a TSW edition! I ate my greens while trying every restrictive diet available; I prayed my heart out begging God to make the pain stop; and at the same time, I fell in love with my body while accepting the healing process.
I am not fully healed quite yet, but I am living life again and am full of energy and gratitude. For those currently struggling with their skin, or for those who are in constant fear of another flare, remember that this too will pass and once it does, you will have a new and profound love for life.
I’d suggest to stop fighting yourself and to start loving your body for all of the work it is doing to heal. You are stronger than you think. On the days you feel beaten, reach out to your loved ones, or to the social media skin community. You do not have to go through this by yourself. You are not alone.
Read the second of Caroline's guest blogs: The Scars Left Behind: Coping With Life After TSW.
Caroline Szczuka is from Toronto, Canada and currently completing her second year of law school, while healing from TSW. She charts her journey with TSW at @liversante_tsw
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If you or someone you are caring for seems very unwell, is getting worse or you think there's something seriously wrong, call for emergency services straight away. For general medical advice, please contact your healthcare professional, this article does not contain or replace medical advice.
Do not delay getting help if you're worried. Trust your instincts.