Riding the Eczema Rollercoaster

Having a chronic skin condition has affected my life more than I ever would have imagined. Sometimes my eczema makes me feel like I’m on a rollercoaster ride. No two days are alike, which makes it very hard to manage.

As an adult sufferer of eczema, it seems like I should have been able to figure out what triggers my flare-ups by now. I do know that sweat, dog dander, and cold weather can be hard on my skin, but the causes of many of my flares are unknown.

My flare-ups aren’t always visible to everyone else, so it’s frustrating when others tell me I look fine, when really I feel terrible inside. What they don’t understand is that my skin hurts from the inside out. It feels like I have 100 needles stuck in my skin accompanied by an unbearable itch.

I have tried all kinds of different things to manage my eczema – prescription-strength creams and ointments, oral and topical steroids, phototherapy, wet wraps, and immunosuppressants. Some of them worked short-term, but nothing worked for me on a consistent basis, which meant I was always forced to try other treatments.

Not only have those meant hundreds of trips to the doctor’s office, but also thousands of dollars out of my pocket. My skin care regimen is expensive, time-consuming, and draining.

For me, the best way to deal with the frustration has been to take ownership of my disease and to educate others about eczema. My motto is that by helping others, I help myself.

Several years ago, I discovered the National Eczema Association (NEA). Finding NEA was undoubtedly a life-changing experience for me. For the first time in my life, I realized I was not alone. People understood me when I spoke about my disease and knew exactly what I was saying. It became more than just a support system for me, but rather a place to find lifelong friends.

Through NEA, I have connected with people all over the world. We share ideas on managing eczema, research information, and doctor and hospital recommendations.

In the last three years, I’ve attended two NEA Patient Conferences, and one “Itching for a Cure” fundraising walk. What I glean from those events is so much more than I could ever take away from any doctor’s office.

If you’re suffering from a chronic disease, I hope you’ll consider becoming part of a national organization. It’s a long and lonely road to travel by yourself, but you don’t have to – there are others willing to help you deal with your condition.

Surrounding yourself with people who are dedicated to helping you is key. It feels good knowing that NEA is looking out for my best interest and leading the fight to find a cure for eczema. Knowing I’m not alone gives me hope.

Debbie Byrnes, from San Antonio, Texas, is a National Eczema Association volunteer. She has had eczema her entire life. Debbie is a sixth-grade English and reading teacher. She and her husband have three children.