The second of our guest blogs by Caroline Szczuka looks at the psychological scars left behind after severe and debilitating flare-ups. Caroline's moving account of her challenging topical steroid withdrawal journey shows that skin conditions - whether eczema, psoriasis or red skin syndrome (RSS) - can leave sufferers devastated long after the skin itself has healed.
When someone is suffering with a health condition, they experience two types of pain: the physical discomfort and the mental battle, which in my opinion, is the harder of the two to bear.
I’ve had eczema since childhood.
In my late teens, I chose to treat the mild eczema flares, which were triggered by stress, with steroid and immunosuppressant creams. This led to my skin becoming addicted to the treatment and ‘rebounding’ (ie showing symptoms of inflammation) once I stopped applying the creams.
My topical steroid withdrawal (TSW) began in February 2019. The first four months were horrific. I never knew a person could feel that much pain. I was bedbound and confined to the four walls of my apartment and to my own thoughts. I lost my sense of identity and found it difficult to remain positive.
During my withdrawal, I would idolize those who had overcome TSW. They were beacons of hope who seemed happy and confident. I couldn’t wait to join the ‘healed club’ and resume my old life! But once my physical symptoms stopped, I continued to feel the same loss of identity I’d experienced during TSW. The four walls that I’d once been confined to by necessity now became my comfort zone and security blanket. I was unwilling to leave the apartment for long periods of time and I took to wearing leggings and loose shirts rather than dressing in more appropriate daily attire.
It took me a while to adjust to ‘normal’ life again. I was constantly afraid of another flare, so I didn’t change the habits I had during my TSW. I was always prepared for the worst.
A few months ago, I decided that I no longer want to be haunted by something that wasn’t actually happening. Now I’m six months into my withdrawal, fortunate to be mostly healed and able to live life again. The physical wounds have healed, and I no longer experience major symptoms, but some mental scars remain.
I get nervous when I have to purchase a skin product, and struggle to try new brands. These days I thoroughly research each ingredient and I’m alert for any potential side effects. It’s odd thinking that I used to grab products randomly from a store shelf without thinking twice.
I no longer wear heavy makeup and stick to the basics: mascara, eyeliner, eyebrows. I fear that my old makeup routine will tempt a flare, so now I prefer simple, natural makeup where my skin can breathe.
My showers are not ridiculously hot or long anymore; I used to spend anywhere between 40 minutes to an hour in the shower every day, applying hair masks, exfoliating my skin, and lathering my body in generic body wash. During my TSW, the slightest touch of water would feel as if acid was being poured on my skin; I can still remember the sensation and I still feel anxious before taking a shower. I often turn the shower on, stick my arm out towards the faucet, and make sure the water does not burn my skin before I fully get in. These days I shower in tepid water for a maximum of 25 minutes, and use minimal products which are tailored to my skin and hair needs.
My deepest scar and my greatest fear is the thought of experiencing a severe TSW flare and reliving the first four horrific months of my withdrawal. I try not to think about it too much and I try to take each day as it comes, but at times the fear gets the better of me. Thankfully, I’ve noticed that as time passes the fearful thoughts become less frequent and don’t last as long. I know that even if a flare were to happen, it will end, and I will heal again.
TSW has taught me how to adapt and remain resilient. I have developed a new love for life and a sense of gratitude for the little things. I recognize my personality again. I still struggle with certain memories and have days where I am less positive but setbacks are part of the healing process - and that’s okay! My mind continues to cope with all that has happened in the last six months and my body is readjusting to surroundings beyond four walls.
I believe that eventually, even these mental scars will fade, and the trauma I experienced will become a painless memory. I’m still waiting for the carefree bliss I once had, but I’m also very proud of the progress that I’ve made. I know that time will eventually heal all of my wounds.
For now, I am enjoying my new perspectives and love the person I am today!
Read the first of Caroline's guest blogs: Building Resilience When You're Going Through 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
If you require medical advice we recommend you always contact your healthcare professional.
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.