Experiences
My Topical Steroid Withdrawal & Eczema Experience: “It Felt Like My Skin Had a Red-Hot Stove Over It”
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So much can change within a year! As 2021 was coming to a close, I embarked on a journey whose impact I could never have predicted.
One evening, after getting home from my favourite writing spot, a cozy restaurant hidden deep in Entebbe’s suburbs, I felt off. My skin was burning up and I felt like a red hot stove was all over me. I have dealt with eczema on and off since I was about 2 years old, but this felt different. I looked for the cream which usually gave me relief and it was squeezed empty. Like, not a single bead could be extracted no matter how flat I crushed it. I was so uncomfortable and needed the itch to go away, so I could focus on whatever deadlines I had.
The time it took between that moment and getting the new cream felt like ages. At that time, a chronically online human like me did only what a chronically online person knows to do best: I went online. I googled my symptoms, asked Reddit, asked Quora, Healthline, and everyone. Something caught my eye as I was perusing through the r/eczema subreddit. It was about the effects of misusing steroid creams. My interest was piqued, and I went down a rabbit hole that led me to YouTube, WebMD pages, and another subreddit. All answers were pointing toward one culprit, and one three-word phrase was the constant echo I heard: Topical Steroid Withdrawal.
A quick science class: Eczema is an auto-immune condition that presents with itching, redness, and flaking of the skin. These appear in select areas of the body like the neck, elbows, and knees. It is very uncomfortable, and for many, grows out with age. I’m not one of the lucky ones. Treating eczema is hard, because auto-immune disorders work in such a way that the immune system does not distinguish between healthy tissue and potentially harmful antigens. As a result, the body sets off a reaction that destroys normal tissues. This rings true for other autoimmune illnesses like lupus, rheumatoid arthritis, and the rest.
It is a lot cheaper to focus on maintenance rather than the winding road to healing. This is where steroids come in. Corticosteroids (not anabolic steroids, which bodybuilders love) are great in suppressing immune responses like eczema. Over the course of my life, I’ve had them injected in my body, ingested as tablets, and used a topical cream.
What is Topical steroid withdrawal also known as ‘red skin syndrome’ and ‘steroid dermatitis’? When topical steroid medication is stopped, the skin experiences redness, burning, a deep and uncontrollable itch, scabs, hot skin, swelling, hives and/or oozing for a length of time. It has been reported in people who apply topical steroids for two weeks or longer and then discontinue use. Symptoms affect the skin and include redness, a burning sensation, and itchiness, which may then be followed by peeling. These steroid creams are meant to be used as a temporary measure, but I was using them as a vital part of my eczema management routine. When the cream stopped working and the eczema spread, doctors prescribed me a stronger cream and sent me home. Those worked for a while until my body grew resistant to them as well. By the time I was burning up from not having a refill in a couple of days, I was using a potent cream.
As I read and watched stories of people who had suffered from this condition, my stomach sank. The sensations they were describing were familiar. I frantically looked through gory images of oozing skin and piles of flaked-off dry skin. In there, I chanced upon testimonies from people who had completely recovered. I hoped I’d be one of them. I cried, because I knew what I had to do at that moment. I was scared to even consider what it would mean for my life – but in the same breath I was filled with determination. I knew I had a hard road ahead of me, but I was just going to do it. Without consulting another doctor, I quit the steroid creams cold turkey. I trashed everything I had, including the brand-new tube I had just gotten. I told my mom what I was about to embark on and asked for her support. She had no choice, because my mind was already made up.
Let me pause here and just offer a word to anyone who might be where I was at that point – please do not quit steroid medicine cold turkey. That was a dangerous decision I made that might have killed me. Corticosteroids work by increasing the cortisol in your body, getting off them at once puts your body at an unusually low level of cortisol and that can have dire consequences. I felt the consequences slowly at first, then all at once. I was about to have the worst year of my life.
The first thing I noticed was a shadow of grey creeping up my skin from where the eczema rashes usually were. It spread everywhere apart from the palms, the bottom of the feet, and the nose. My skin, which normally has red undertones, suddenly looked sickly and grey. My hands were always moving somewhere on my body, trying to relieve an itch that was bone deep. Sometimes I wondered how I had any skin left. I couldn’t sleep at night, literally. I would lay in bed thinking about anything and everything, finding sleep only when the sun came up around 6 or 7 in the morning. Eventually, I gave up on trying to sleep and
accepted my reality. At some point my body couldn’t regulate my temperature. I would get shivering cold, sleeping with two blankets on my bed, no matter the weather. Sometimes I’d go and sit in the paved compound under the sun in the afternoons.
The hot stones and the cloudless sun were the perfect temperature for me at the time. It got so bad one time, that I sat in bed with my blow dryer in hand, extra hot, warming up my skin under the sheets. It didn’t feel hot, it felt normal. Sometimes I’d feel heat escaping my body, like when I was washing my hair. I’d feel the water heat up around my head and my mom would comment on how I felt, but I never sweated. For one entire year, not a single drop of sweat left my body. I lost weight drastically, and my clothes started to wear me. Some insecure part of my brain liked having a flatter tummy and thinner arms. It was only when I couldn’t lift my foot to enter the car one day that I understood how weak I had become. I left the house only on a few occasions. I had no energy for anything at all, scrolling on Twitter all day. While I barely had any energy to get up and shower, I had to do it, otherwise I would look like a sleep paralysis ghost. I feared going to the kitchen in my state and have the rest of the household see me in the rawest, most unrecognizable state, so I stayed in my room most of them day. I was dry, white like paper, and sickly – so I found a way to force myself into the shower. Every “morning” at around 12:30 or 1 pm, I would order a meal via Jumia Food.
Then I’d use that as a timer to hop out of bed, get washed, and dressed in time for my food to arrive. While the water on my skin felt like acid, it worked. I saw the worried looks on the face of the delivery drivers, but little did they know just how bad it had been just 30 minutes before. I spent my entire savings trying to make sure I showered every day, and after a few months when I calculated the damage, well…
it was astonishing.
One other major challenge was hair breakage. Now, people on the internet know me as 4C Mami – the natural hair girl, but my skin was so dry that my hair started falling out. I had no arm or leg hair, my pits were clean, and I had no eyebrows AT ALL. Every time I combed, the hair at my crown would break. I thought the condition would take only three months, so I held onto the long strands that had been part of my ‘brand’ for as long as I could. It’s almost impossible to style hair that has about 2 inches of forehead missing, but I did try. Hats, head wraps and comb-overs became the norm, but around July 2022, it had to go. When I asked my regular salon to do it, they assured me it would grow back fine – so I decided to go to a barber shop where they had never met me before.
A sweet older lady helped me to cut, and sponge roll my hair, and I held in the tears that wanted to burst through in that moment. I knew it was time for that weight to go. I had no power in me to write, be it articles or even in my journal. Around May 2022 I got a call I had somewhat been expecting. I lost my full-time job because I literally couldn’t do it anymore. I found that I had energy to leave the house to get on set for photo shoots, a once a month or so occurrence. I’d dream up scenarios and put together mood boards – some of which came to pass, many of which remained in the drafts. I had regressed to being almost Stone Age, talking in pictures; but those who understood that language spoke back. I found a deep comfort hanging around photo shoot sets, and every part of the production process ate up my full attention. While I hated how I looked, I loved the photos I helped birth. It was during this season that I helped produce a vitiligo awareness cover with Balinda Musti, who doesn’t know just how much his story of acceptance and stigma shone a light for me towards perseverance.
Speaking of stigma, the amounts I endured were overwhelming. Many people walk around with illnesses and conditions they have to endure over time. But high blood pressure doesn’t necessarily show on your face. Ulcers aren’t something that people can point out on a passerby. I did not have the luxury of concealing my issues from the world. I told a handful of people about what I was going through, and some distanced themselves from me because of it. My skin is the first thing you see, so it was impossible to hide. I got questions, rumors, and pitiful looks. Some people thought I was a bleaching job gone wrong because I was so much darker. Others assumed I was contagious and would reluctantly shake my hand. One person even told me I was lucky to be going through this before I was married, because what man would want me when I looked like this? I had people with the grace to pretend like nothing had changed on me and worked alongside me. The group I preferred were the ones who asked. I knew that whatever they assumed was probably worse than my reality.
Depending on who was asking, I’d either explain the whole process, or I’d give them a brief ‘extreme eczema’ to keep it pushing. Some thought they were being helpful by suggesting me different remedies, not knowing I had probably tried it all, but something in me knew they did this out of kindness, and a hope to see me out of my misery. A smile and a thank you was all I had to give in response.
Some of the stigma was self-inflicted, if I’m being completely honest. I hated how I looked and projected this upon everyone around me. I may not even be the best at reading faces, but I assumed the worst of whatever the reaction was. I hid from many friends, declined video calls and postponed visits indefinitely. One of the friends I saw most frequently was a med student who I felt understood my situation on an objective level. But for everyone else, if I couldn’t avoid being seen, I would cover every inch of my body with a combo of clothes and makeup. I would leave the house covered from head to toe, with boots and
long pants and turtleneck tops, large sunglasses and hats. I looked like I belonged in a winter wonderland. I loathed being outside, but made an exception for photoshoot sets, meeting my big brother, and a couple of friends who checked on me unrelentingly. My brother was radical about ignoring strangers, exclaiming “fuck them” when I suggested I might not like to deal with the general public’s reaction.
After describing this entire debilitating experience, which single individual would you not want to see if you were in my shoes? One afternoon, after successfully finalizing a photo shoot, I was in high spirits and called my brother to meet up. We decided to meet at one of the lounges in Kololo, and while he was on his way over to me, I bumped into my ex. When he saw me, he did a double take, like he could barely recognize me, and then sauntered over to say hello. How was I supposed to answer the very basic question he asked, “How are you?” it’s supposed to be a simple, polite question with a simple, polite answer but I was not about to elaborate my ordeal to him. When he left my mind whirled in circles wondering what he was thinking, what he would tell his friends about the encounter. All through the year long journey I kept doing more research, finding alternative medicine that could help. I tried red light therapy, salt baths, taking supplements, no moisture therapy – everything.
My mom sometimes would go overboard buying me whatever cream and butter she saw or was recommended (steroid free, of course) but I settled on whatever didn’t make my skin sting in pain. Aloe Vera gel and Vaseline jelly were my friends for a long time. Still are. Around August, we tried modern medicine again, although I was reluctant to see a doctor and have my experience dismissed, like many on the topical steroid withdrawal forums had endured. The first place I went to seemed like the real deal on their website, but the actual visit was disheartening. The doctor listened to my entire story and decided he wanted me back on steroids because I went off them in a bad way. This was true, yes, but the cream was not the answer. I was already 10 months down the line; why on God’s green earth would I go back on them without a clear plan?
At this point, I wasn’t completely anti-steroid but I was not going to touch one without figuring out why. The doctor went on and on about what I should have done, and when he realized I had done some research, resorted to using jargon to alienate me from his monologue when I would ask questions. He wrote a list of medicines on his little screen, and when I asked him what the medicines did, he told me not to worry about that. A quick Google told me he was prescribing steroids. I put my foot down and told him to take it off the list. I tried to have a conversation about non steroid treatments like Dupixent or other biologic therapies; he got excited about the prospect of putting me on a wildly expensive experimental treatment. He started to refer to me as “the client”, making calls to consult other doctors – my humanity left at the door. I was so discouraged that I didn’t consider a doctor for another two months. When I left that office, I knew exactly what I wanted. I wanted a better doctor who would insist on taking tests and investigating my situation rather than running to prescribe symptom solvers.
I had never felt despair as I did during that time. I had more good days than bad ones by this point and was leaving the house a lot more even though I missed what I looked like before, who I was before. I was considering the fact that this was going to be my “new normal” for a while. I knew deep desolation. Hope was slipping through my hands, held loosely together by the support system I had around me. I had a friend who would constantly text me, affirming how I well I was healing. I found it hard to pray, I just sat there and waited for one day to transition into the next. I reminisced on the trajectory of my life before withdrawal, and tortured myself by imagining what I would be doing if I wasn’t in this state.
I never opened Instagram because all the possibilities of my life were being lived by other people and I couldn’t take it. I had a cloud of melancholy with me everywhere I went and made a point of hiding myself rather than enjoying myself. I had a dream one night where I was running a race with people I couldn’t see, and I remember thinking in the dream that ‘I’m not the running type’. Well, I crossed the finish line, and when I awoke, my mind had a resounding thought: This journey is hard, but it will end.
Around my first anniversary, in October, my mom caught wind of two skin clinics in the same area. One in Acacia Mall and another nearby, whose whole thing is Chinese medicine. I was skeptical of the Chinese medicine, but I was willing to hear more.
The one at Acacia was pricey but had helped my mom’s friend who was dealing with alopecia. Apparently, they make you go through extensive tests and medical plan. At the sound of blood tests, I was sold. We decided to put aside some money to start the journey. My first visit was in February this year.
When I spoke to the doctor, he just listened. He asked me questions to better understand what I had gone through and what I was doing about it, and then explained to me what he thought we should do. He sent me to the lab, and while it was hellish trying to find a vein through my scaly dark grey skin, eventually, we did. I found out so much about my body and what it had been going through over the years. I had a full allergy panel done, and saw what was agitating me, some which could not be avoided,
while others I promptly cut out (no more omelets for me, unfortunately). I also saw how high my white blood cell count was in response to the allergens. I finally had the answers I had been blindly stumbling towards. Relief filled my body as I could settle in and hear the medical plan of action. I won’t share all the details here, but I’m well on a steady journey to a life free of the crutches of immunosuppressants.
When my birthday rolled around later that month, I felt like a newborn baby. The immunosuppressants had worked fast, I looked better already. I felt like life had started afresh for me, and I had a newfound appreciation for how my body presented itself. I spent that day doing one thing I had missed most from the year in bed: swimming. I made laps in the pool as if I lived there. While my skin today looks better than it did before the withdrawal process, I walk around with a newfound appreciation for my skin. I
look like nothing ever happened, with my skin restored and the pesky flakes unseen. I sleep at night like normal. I feel cold when it’s cold and sweat when it’s hot. Having my life stripped from me forced me to appreciate the second chance I was given. I haven’t yet gone back to creating video content like I used to, because I’m still getting used to who I am today, and picking up the pieces from where I left off.
When I won the raffle from Woka Studios from the Content Creators event last month, I knew exactly what I was going to use the studio time to do. I wanted an ode to my return with my teeny weeny one-year-old afro, and as my friend calls it, my ‘butterfly season’ (cocoons are scary). I was so glad to have worked alongside people who saw me in the bad days and still made magic with me. Tianah, the makeup artist did this gorgeous natural glow, with a glossy lip that seemed an impossibility last year. Ivan worked with me on the April ‘Rare Beauty’ vitiligo shoot, and to have him capture this transformation was a full-
circle moment for me. I’m grateful to have another chance at life. Whatever insecurities I may have harbored over my looks crumbled when I saw myself in that state. To be given the grace to return to me is a gift I cannot take for granted. I’m thankful to all who supported me on my journey, to those who gave me opportunities despite looking like a ghoul, and for the steadfast love.
Credits
Muse: @atwiin3
Location: @wokacreatorstudios
Photography: @mats_ivo_ @centuryphotographyug
Makeup and Hair: @tianah_artistry
Creative Direction: @esquisse_256
SatisfashionUg@gmail.com
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