My parents took me to the doctor, who thought it was mostly a reaction to cow’s milk. So I went on soy and almond milk 30 years ago, before it was the cool thing to do. The rash went away, and eczema became more of a seasonal concern. I would have it on my hands in winter when it was cold or in the crooks of my elbows or behind my knees. Home remedies and moisturizers kept my symptoms under control during my childhood and teen years.
eczema-atopic-dermatitis-work (AD) became worse, although it stayed on my arms and legs. But about a year and a half ago, I suddenly got it everywhere—all over my body, on my face, on my scalp. It was red and patchy; parts were weeping and crusted. It wasn’t itchy, it was painful.
I was very upset. I was very self-conscious. I was humiliated about it. It wasn’t something makeup could cover. I would wear long-sleeve shirts. Out of concern, my coworkers would ask, “Have you seen your face?!” My patients and their families would say, “Are you okay?!” It made me feel horrible. It affected my ability to do my job. To be compassionate and caring toward someone, I have to get close to them, but maybe they didn’t want me to touch them looking like I looked. I know AD is not something I can give to someone else, but they might not know I’m not crazy-contagious, because I looked like I was!
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Some people didn’t believe me that it was eczema. That really hurt. Why would I lie about it? I believe them when they said they had never seen eczema like that before—I hadn’t either! But it’s not helpful to tell me it’s not eczema. My family and loved ones would tell me to try not to let it affect me emotionally, but it was very hard for me. I’d like to think no one was judging me, but people stared.
I kept trying all the normal remedies and treatments I always used, but it kept getting worse. I went to multiple doctors—an allergist, an immunologist—and ran the gamut of medical practices. I changed all my soaps, washed my sheets, cleaned everything. I already used hygiene and body products approved by the National Eczema Association (NEA). Once I started getting really sick, my stress went crazy and made my eczema worse, but I don’t know—and I may never know—what triggered that severe flare-up. It wasn’t as simple as “Don’t use that lotion.”
The skin on my face became so broken down, I was getting a lot of infections from being exposed to germs at the hospital where I work. I was so sick that I needed to take time off.
My immunologist was very honest. He told me, “I really can’t think of anything else I can offer you that you haven’t already tried.” I live near Hartford, Connecticut, and he told me I needed to go to a big hospital in Boston or New York where doctors would be doing research on people like me.
My mother helped me research different physicians, and we found a dermatologist in Boston who was studying eczema. She put me on a new treatment I had never heard of before as part of a clinical trial, and it seems to be working well so far. At first, I drove the 2 1/2 hours to see her every two weeks. It was a commitment, but I didn’t care. That treatment is now FDA-approved.
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I’m so glad I found a treatment that works for me. I want other people with AD to know there are different treatments and things that you can do. And that there’s someone out there like them! You’re not the only one; there are other people like me suffering with this. Yes, we’ll have this forever, but there are things you can do to make it better. There are a lot of great resources, like the NEA and Understand AD, where you can read about different treatments and people’s stories.
I’m not my eczema. It sounds cliché, but I’m Danielle! I’m a nurse, I’m a sister, I’m a daughter. This is not my entire being. I have to overcome it and power through—and I will.
*Danielle asked to be identified by her first name only.