If you are going through hell, keep going.
— Winston Churchill
“I’m so tired. Tired of trying to feel better. Fighting everyday to feel okay. I just want to feel sad. I want to feel mad. Everyone assumes if you look better you must feel better. I feel worse. Summer is normally a break from the crippling depression, but I didn’t get that relief this year. I don’t know if I’ll make it through this. I don’t see the point in fighting anymore.” – journal entry from September 2018.
From the outside, 2018 looked like a great year for me. I focused on creating a healthy, balanced lifestyle and I filled my Instagram with images that reflected that: colorful, healthy food, laughter and friends. Most visibly, my 50 lbs weight loss caught my followers’ attention and led to numerous compliments and questions about my diet and workout routine.
The answer to these questions is complicated.
I experienced a massive physical, mental, and emotional transformation in 2018 but it wasn’t due to a special diet or exercise routine. In fact, this time was the darkest, most agonizing time of my life and it was over two decades in the making.
This story really begins in 1995. Eczema affects about one-fifth of all individuals during their lifetime and unfortunately I joined the club as a baby. Doctors recommended topical steroids and my mom diligently applied the cream as any good mother would do. Topical steroids kept the eczema at bay, but soon after it came back even stronger. As the years went on, I needed more and more of the steroid just to keep the eczema under control.
By the time I got to college, I felt as if my life was completely out of my control. My stress and anxiety manifested into dangerous addictions from binge eating to binge drinking. Plagued by chronic fatigue and insomnia, it was difficult to maintain any healthy routines, or even make it to class. My skin was gradually getting worse, despite the increasing amounts of potent steroids I was using. It’s hard for me to fully explain the feelings of hopelessness, despair and excruciating pain I was experiencing. Doctors would tell me “This is just how your skin is,” then prescribe me a stronger steroid that would help again until it didn’t.
I’d later find out I was already caught up in a cycle of topical steroid addiction that had incredibly damaging effects on more than just my skin. I didn’t realize my hormone imbalance or insomnia could be caused by topical steroid use. Despite my efforts to eat well and practice mindfulness, my anxiety attacks and crippling depression became my new normal. Lost and alone, I couldn’t figure out what was happening to me or how to stop it.
Searching for answers from doctors and allergists led to more dead ends. They told me there was no cure for eczema and I could stay on the steroids or suffer alone. That answer didn’t satisfy me. I decided I was done suffering and done relying on others to help me. I was in the driver’s seat and needed to find answers on my own.
After I graduated in May of 2017, I began desperately searching for relief. In the depths of a YouTube search, I found the answers that changed my life forever. I was suffering from Topical Steroid Addiction, which leads to Red Skin Syndrome (RSS) also referred to as Topical Steroid Withdrawal (TSW) or steroid induced eczema. Dermatologists typically use topical steroids as the first course of action in treating skin inflammation, like eczema. The first steroid, possibly just an over-the-counter hydrocortisone, is then followed by progressively stronger prescription steroids. As the patient continues to use the steroids, they gradually need more, higher doses to keep the inflammation controllable. In my experience, dermatologists don’t hesitate to continue prescribing higher and higher doses and dismiss any concerns.
Without the progressively stronger steroids, the withdrawal process begins within a few days. The patients’ skin becomes covered in a worsening, bright red rash, more extreme than the original condition. In effect, the treatment itself causes a new illness: steroid induced eczema. So what’s the cure to the vicious cycle? Stop using steroids.
When I realized that my only choice was to stop using steroids, my nightmare began. My body quickly became covered in thin, raw, bright red skin, even in spots where I had never applied the steroid. I couldn’t shower, moisturize, or put on clothes without excruciating pain and sleep was impossible. My skin became my enemy.
Night was the worst time of day and the damaging effects of topical steroid use were on full display. Insomnia is a common side effect, but I couldn’t even lay in bed without pain or discomfort and my skin hurt to the touch. Blisters and sores covered the majority of my body, and fluid under the skin caused swelling and oozing. The steroids had a massive impact on my cortisol production, leading to abysmally low cortisol levels which had numerous effects of its own. I was constantly in fight-or-flight, but I couldn’t escape the source of anxiety and pain: my own skin.
As my body began healing, my immune cells cleared out the nerves damaged by steroids and started a regeneration process. This process leaves the nerves very sensitive. Waves of nerve pain felt like burning, stabbing, incredibly painful sensations under the skin. I couldn’t regulate my temperature and would go from extremely hot to freezing cold in seconds. When I got too hot, I couldn’t sweat and would become covered in hives. Applying lotions caused my skin to burn even more, so I decided to go without moisturizers. The days without moisturizing were torturous and my skin shed layer after layer. There was nothing I could do to give myself any relief. I had no idea what would happen to my skin or if I would ever feel normal again. I felt claustrophobic in my own body.
As I put my attention on just trying to get through each day, keeping up with daily life became so difficult. Night after sleepless night was spent in panic, rage, terror and despair. I didn’t feel like I could be the friend, daughter, sister, employee or the person I wanted to be. There wasn’t a recognizable diagnoses that would help people understand what I was going through and I didn’t even know where to begin to describe it. I struggled to find a reason to live through the pain and I felt like a burden to everyone around me. But I wasn’t done fighting.
Over the course of about 10 months, I went through a series of trial and error to figure out what foods and products would agree with my skin and promote healing. I also developed healthy habits and routines to maintain my mental health during this time. The process wasn’t without its challenges, but it was necessary to promote physical and mental healing. As my skin began to improve, it started to flake and peel like a sunburn as new layers grew. Slowly, my skin hurt less, the nerve pain subsided, and healthy skin appeared. I realized I was watching my skin regenerate new layers at an accelerated rate. My skin continued to heal cyclically and I slowly started to see an end to the nightmare.
Even though my sister only used a low dose, over-the-counter steroid, a patient can get addicted in as little as two weeks. She used a hydrocortisone cream for 26 years and is in the midst of her own withdrawal period. You may be wondering why our doctors didn’t tell us about the possibility of Topical Steroid Addiction or the horrific withdrawal period that follows. Unfortunately, the medical community as a whole has failed to recognize the long term damage of these potent drugs, despite many years of medical evidence. Some doctors are simply unaware of Topical Steroid Addiction; and others have a hard times accepting that it exists. They claim only what the drug companies have published, such as topical steroids can thin the skin or cause stretch marks if used too long. As many have experienced, these are not the only things that can happen.
Today, I look down and see beautiful, healthy skin all over my body — something Doctors told me would be impossible. I have a new appreciation for life, my body and the healing process. Healing IS possible through wellness, mindfulness, awareness + intention. I want to share my story for anyone experiencing Topical Steroid Addiction/Withdrawal, but the habits and lessons I took from this experience can be applied to anyone looking to become a better version of themselves:
TAKE BACK CONTROL: Take the first step by bringing awareness and intention back into your life.
MEDITATION: At first, carving out 10 minutes every day to mediate felt like a burden, but I gradually started noticing the difference a morning meditation can have on my day. Meditation is about gathering your attention, focusing on the present moment, looking at your thoughts objectively, and finding space in your mind. I recommend a daily meditation to everyone because 10 minutes of calm and clarity is priceless.
DIET + FOOD: My relationship with food has never been pretty. I have been aware of my body, skin, and weight for as long as I can remember, and it always seemed out of my control. I have been able to reshape my relationship with food by connecting with my body, listening to what makes me feel good/what makes me feel bad, and learning how food fuels my body.
EXERCISE + WEIGHT LOSS: I also starting being more intuitive and intentional with exercise and rest. After years of trying to lose weight by doing intense HIIT exercises, I cancelled my gym membership. I gradually began incorporating a daily walk and a 20 minute yoga practice into my daily routine.
WRITTEN AFFIRMATIONS: The most powerful tool I incorporated into my daily routine were daily written affirmations. “The idea behind affirmations is that you simply write down your goals 15 times a day and somehow, as if by magic, coincidences start to build until you achieve your objective against all odds.” – Scott Adams
“It’s the repetition of affirmations that leads to belief. And once that belief becomes a deep conviction, things begin to happen.” – Muhammad Ali
SKIN CARE: Months of research, trial and error, and a blood allergy test later, I removed all fragrances and preservatives in laundry detergent, shampoo/conditioner, lotion, makeup, even chapstick. I even had to change my toothpaste after learning I was allergic to mint. Skin is our largest and most important organ, and we need to take care of it with quality products that agree with our skin.
ENERGY WORK (EFT + REIKI): I started to see a therapist who specializes in EFT tapping and a reiki master. EFT and Reiki arguably saved my life and I believe everyone can benefit from energy work.
SLEEP SLEEP SLEEP = HEALING: Insomnia was still an increasing problem during this time. I was struggling mentally and still experiencing adverse physical reactions to stress. Prioritizing sleep was imperative for the healing process.
DAILY ROUTINE: Not only are you in constant pain and discomfort during topical steroid withdrawal, but your hormones and cortisol levels are out of whack. Maintaining a daily routine of mediation, written affirmations, yoga, and happy playlists became an integral part of my healing process.
BE SELFISH FOR THE PEOPLE AROUND YOU: The most challenging part of this process was letting go of situations that no longer served me. This included friendships, a job that wasn’t the right fit, and the part of myself that clung to familiar feelings of self-loathing and self-hate. I needed to leave the old me behind and work on the person I am becoming and what makes me happy.
TRUST: Trust yourself, trust your intuition and trust that everything is going to be okay. In the midst of TSW, it was hard for me to trust that there was a reason I was going through such a tortuous experience. Today, I can look back on the experience with a sense of gratitude for the new sense of hope I have for life.
https://www.hindawi.com/journals/isrn/2014/354250/#B1
https://www.itsan.org/what-is-rss/
White Paper on Steroid Addiction
lauren on mars 