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Finding My Tribe

Tonya B. | Nutrition Counselor, Mother of 2

Actual Eczema Sufferer

It’s hard to be a kid with atopic dermatitis for a lot of reasons. One of those reasons is the other kids. Elementary school-aged children are not the subtlest bunch, and they love asking questions. When I was a kid, I got endless questions about my atopic dermatitis from my playmates. I wanted so badly to be around people that understood my condition. I often wished I had an “atopic dermatitis fact card” I could hand out. It would answer all their probing questions and allow me to get back the business of being a kid. I believe it would go a little something like this:

  1. Nope! It’s not contagious.
  2. I don’t know; I might grow out of it.
  3. No. Not contagious.
  4. Yes, it is a disease.
  5. Yes, grownups can have it, too.
  6. Nope, still not contagious.
  7. It’s more than a rash; it’s very painful.

Unfortunately, being an adult with atopic dermatitis means still needing that “fact card” from time to time.

Adults fixate on a different aspect of my condition: triggers. The well-meaning folks in my life seem obsessed with finding out what the culprit is. They believe if they help me avoid certain irritants, all will be well. While that can help, this is simply not my reality.

I explain atopic dermatitis as an underlying skin issue that causes flare-ups on the surface of my skin. I wish people knew that atopic dermatitis flare-ups are not predictable. As much as I try to manage my disease, I can’t always prevent my skin from reacting. People expect me to appreciate the sentiment, but all their advice does is leave me frustrated. Having to explain myself and my disease since childhood has been a daunting task.

Then something happened. I saw a magazine advertisement for and was drawn to the statement “Find out what is going on beneath the skin” at the bottom of the ad. I went to the website and a new world opened to me.

I was connected with other men and women who understood what it was like to have to field these questions all their lives. I cannot tell you what a huge relief it was to be surrounded by men and women who knew what life is like with atopic dermatitis.

At one event I was standing there speaking with someone, and I realized we were both scratching! I was able to be myself without having to explain anything. It was freeing; no questions, no suggestions, just two people who were able to understand each other. I had finally found my tribe.

Feeling a sense of belonging didn’t solve all the issues surrounding my atopic dermatitis, not by a long shot. However, it did help me feel like I wasn’t alone. Having that sense of community meant the world to me; it gave me hope. It allowed me to forget about my fact card, if only for the day. You don’t have to go through your journey with atopic dermatitis alone.

Caregiver and patient stories reflect personal stories. Individual experiences may vary.