What’s it like for a teenager to live with a severe skin condition? This week's 'Teen Talk' columnist explains what it is like to live with a severe form of eczema and how parents can help teens with similar conditions cope.

boy scratching his arm near window
Credit: Illustration by Caitlin-Marie Miner Ong

I’ve always felt different from other kids—because I look different from other kids. When I was 2 years old, I was diagnosed with severe atopic dermatitis (AD), a form of eczema, a disease that causes rashes and intense itching. It completely changed my life.

Here’s how I can best describe it: when you have an itch, you want to scratch it, right? Well, with my AD, it’s so much more intense. Scratching makes you feel itchier, so you scratch more, and more, and more. It’s almost impossible to stop. Sometimes during really bad flare-ups, I scratch so much that my skin starts to bleed. The areas become raw and painful, it feels like having a million paper cuts all over your body.

My parents always tell me, “Isaiah, stop scratching.” I know they’re just looking out for me, but I can’t stop. In those moments, I just need them to understand I’m doing the best I can. Not only is it annoying to itch, but it hurts, too!

The physical pain and irritation are only part of the picture; living with severe AD has affected many aspects of my life. When I was a kid, all I wanted to do was play baseball. But the grass and sweating that comes with playing outdoors triggers my AD, so eventually, I had to give up my dream of playing the sport. My AD has also impacted my studies. There were times when I had to miss school because flare-ups kept me up all night scratching, or because I was in the hospital with an infection.

What I’ve learned, though, is that when one door closes, another opens. Being unable to play baseball allowed me to discover my true passion: music. When I’m playing the drums, I feel amazing. It gives me the kind of fulfillment and independence that my AD denies me in other areas.

Being able to escape into my music has been great because living with AD can be very isolating. Even though there are people in my corner—my parents, my siblings, my friends—it can feel like I’m the only person in the world living with the disease.

And then, of course, there are the people who don’t understand AD at all. They just see my skin covered in rashes. Or maybe they just notice that I’m scratching all the time, or that I miss a lot of school. They don’t know that I’m scratching because I can’t help it, that the rashes aren’t contagious, or that I miss school because I’m up all night from the itching.

There are a lot of people who can be mean. I’ve always worried about people liking me and seeing past my AD. Some people can’t. One time, I reached out to shake a classmate’s hand, and without warning, he shoved me to the ground. He thought I was contagious because of how my skin looked.

So, on top of living with severe AD, I have also taken on the extra task of educating people about the condition. That’s why it has been empowering to work with the teams at Understand AD  and the National Eczema Association. Together we are working to help increase education and understanding of the disease.

The Understand AD Squad—which includes a dermatologist, a psychotherapist, and a young adult living with AD—came to my house to talk about my experience and help me feel more confident living with AD and managing the disease on my own, especially as I head into college next year. We captured it all in an educational video series and created a lot of useful resources, to hopefully help other teens and their parents going through a similar experience.

I came away from this experience with a lot of new knowledge, but the biggest thing I realized is that it helps to have a squad of your own—a team complete with dermatologists, therapists, and loved ones.

I was lucky to have my parents growing up. Even though they can be annoying (like when they constantly remind me to take care of my AD), they are always there for me. As they say, I’m their “tough guy.” With their help and with the help of my squad, I’ve never lost hope—and never will.

Isaiah is a 17-year-old high school student from Maryland. Isaiah recently joined an awareness initiative called Understand AD, by Regeneron and Sanofi in partnership with the National Eczema Association, to educate others on the burdens faced by teens with atopic dermatitis, a disease he’s lived with for most of his life. Isaiah also loves playing the drums in his spare time and playing chess.

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