I Became Addicted to My Eczema Treatment

If you’ve had eczema your entire life—as I have—you know how to manage pain. 

Itchy, dry, flaky rashes have been a part of my life for as long as I can remember. Because I was in and out of the hospital trying to manage the irritations, I failed third through fifth grades.

My eczema wasn't in control, and it seemed that anything could cause flare-ups—the pollen in the air, the carpet at my grandma’s house–anything. I wanted someone to put me in a bubble. It felt like I was allergic to everything around me.

When I was in middle school, I was finally prescribed a high-dose topical steroid cream to help manage my symptoms. Initially, I applied it three times a day, and it worked. However, I was utterly dependent on this medication. I couldn’t do anything without ensuring that I had enough on hand in case I had a flare. It ruled my life.

Topical steroids are generally only meant for two weeks, and I used them for 22 years.

For most of my adolescent years, I had control over my eczema with the help of the topical steroid. Then, when I was about 26 years old, I was in Bangkok for work as a professional dancer, and I ran out of my medication a week before coming home.

I was used to going nonstop and pushing through the pain, and I started thinking that I probably shouldn’t be on this prescription for so long. I thought maybe it was good that I ran out of medication.

Topical Steroid Withdrawal

It started behind my knees; they became inflamed to the point where I couldn’t bend my knee. I got welts on my skin. Still, I could handle that. I flew home, had a welcome home party, and my skin ripped open the next day.

It felt like first-degree burns all over my body. I’m darker skinned, but my legs were bright red. The back of my knees were oozing, and I had a cut open on my arms and elbows. There were open wounds, and I felt like I was on fire.

I had no idea what was happening until I found a friend on Instagram who also had eczema talk about topical steroid withdrawal (TSW). 

This was happening to me.

I could either get a higher steroid dosage or detox and heal myself naturally. I had no idea what would happen to my body during the process, but I wanted to recover from the inside out.

At first, I wasn’t sleeping. I could barely even lay down naked. Whenever my skin touched something, it felt like 10,000 needles were pricking me. My body was in shock.

I couldn’t walk or stretch my legs fully for the first three months. I had a quarantine before the COVID quarantine. If I did leave the house, I wore tights underneath my clothes so that fabric didn’t rub against my skin. Oftentimes, I’d have to rush home, rip off my clothes, and just lay on the floor.

By the fourth month, I started doing yoga every day. That’s when I got my second breath. It took five months until I started sweating again.

It was about a year of repairing myself as I weaned off of topical steroids.

During TSW, a lot is going on internally. It would have been so helpful to have had a clinic help me manage my addiction. But TSW is not yet recognized by general practitioners and dermatologists. In fact, topical steroids are the most common treatment that a dermatologist prescribes for eczema.

There was never a conversation about alternative treatments or that it was dangerous to stay on a topical steroid for so many years. I felt very betrayed. I may have even grown out of my eczema by now had I not been on the medication.

I started advocating for myself and found solace in an online community, International Topical Steroid Awareness Network (ITSAN), whose mission is to get the FDA to recognize TSW as an actual condition.

Living With Eczema

Treatment is subjective and different for everyone, but certain lifestyle changes have helped manage my eczema.

One thing is diet—I’ve been vegan for seven years. The cleaner I eat, the stronger my skin feels. For a while, I kept a food journal to track what I was eating so that when I flared, I could look for triggers. Foods like dairy, tomatoes, and lemon irritate me, while anti-inflammatory foods bring me back to a healthy state.

Yoga and breathwork have also helped me calm my central nervous system. Stress is going to come no matter what, whether it be hormonal or external, so it’s good to have a daily wellness practice.

The sun is another blessing, which I get plenty of in Florida, where I live. When I do flare, I avoid water. Instead, I take little birdbaths and let my skin learn how to moisturize itself again. I also give my skin pep talks like “come on, you’re healing.”

Activism

I got involved with a group called People of Color Skin Matters that worked to hold companies responsible for representing communities of color with their products. We looked at their teams—who was in leadership, what did their marketing look like, and who were the scientists making the products? We wanted them to understand how eczema affects people of color.

There aren’t a lot of places showing eczema on darker skin. Even the words they use to describe eczema refers to white skin, like “red patches,” but my patches look black and bruised. I never even saw a Black dermatologist growing up.

But things are changing. I’ve been working with Aveeno to develop new products and help them reach communities of color. Companies have to learn how to talk effectively to communities of color. I grew up using Aveeno products and now I’m sitting with their executives and scientists being asked what my community wants from them. It’s cool that they are going directly to the community for guidance.

Rolling With the Punches

I feel like I’ve been put in this position so that I can help another young brown-skinned girl like myself. Eczema changed my life, but it gave me a platform to help other women of color. The last few years have been a time for healing and pivoting, but I’m ready to move forward.