"Eczema is a disease that no one can understand fully unless they have experienced it themselves. For 15 years of my life, I have battled this disease by myself. But I’m starting to realize I don’t have to endure this fight all alone."
Published On: Dec 3, 2020
Last Updated On: Nov 18, 2021
At only a few years old, I was diagnosed with eczema, asthma and seasonal allergies (the typical package deal), but all were well managed.
It wasn’t until my 20s that eczema took control of my life and developed into severe atopic dermatitis. What started as a rash around my mouth spread to my entire face and body over the course of a year. The next two years were even more daunting.
Someone would show me a photo of myself from a few years back saying how pretty I was and, fighting back the tears, I could not help but feel like I took those years for granted.
Even though I did not recognize the person staring back at me in the mirror, it was not just the way I looked, it was the way I felt. Routine activities like changing clothes or brushing my teeth were a cause of discomfort.
Constant itching, cracked bleeding skin, swollen eyes, hair loss, skin infections — the whole list of eczema symptoms had become the norm for me.
As the undiagnosed condition continued to cover 85% of my body in a relentless rash, I also let it take over my mentality and drive for a fulfilling future.
With that, my whole lifestyle changed and so did my outlook on life. I stopped talking to friends and going into work, and I shut myself off from the world because I did not want to be seen.
All I wanted to do was lay in bed and fall asleep. My only healthy coping tool at the time was my dog, Leo, who was always by my side.
Before long, I was let go from my job, my boyfriend of three years — who I lived with — broke up with me, and I had to move back into my parents’ house. I was so ashamed.
However, that triple hit turned out to be exactly what I needed. It forced me to make my health the top priority and to finally tell my family how much my condition was affecting me.
With my family’s support, I traveled the Midwest going from specialist to specialist trying to find an answer. No cortisone shot, prednisone pill, antibiotic or ointment would provide any sense of relief.
One of the specialists I saw was my childhood dermatologist. I remember being in the patient chair, and all the practitioners were called in to look at me. I knew that they were just trying to help, but I felt like a specimen under a microscope as the practitioners huddled over me with my shirt above my back.
Pityriasis Rubra Pilaris was one skin disease they considered, but contact dermatitis was the diagnosis they went with. I was sent to another doctor to get three-day patch testing.
Although I did not agree with the diagnosis, at this point, it was a process of elimination. The results came back negative, and I was back to the drawing board.
In 2019, my allergist recommended Dupixent, and she happened to have samples that I could start on my next visit. One month after my first injection, my skin made a comeback, and within three months, it was like brand new.
All I wanted to do was yell on top of the rooftops, “LOOK HOW GOOD MY SKIN LOOKS!” I could not believe, after three years of searching for an answer, there was finally a treatment that worked for me. Dupixent was truly life changing.
I have come to find that, as I open up about my eczema journey, my skin has healed faster than my mind. Those three years prior to being prescribed Dupixent, particularly the last one, were emotionally traumatizing.
It has taken me a while to have the courage to face reality. I just kept shoving away any emotions and isolating myself — anything to avoid this horrible situation.
I truly believe my eczema journey would have been very different and less challenging if I had used healthy coping methods when I first developed atopic dermatitis.
That is why I am so excited to be a part of the National Eczema Association’s community of NEA Ambassadors.
I want to open up the discussion about all things eczema, not only to my fellow eczema warriors, but also the public at large. I want to help those affected by eczema feel supported with a greater sense of hope for less pain and suffering.
Today, I have my own apartment, a job that I love and a boyfriend that encourages me to talk about my feelings. I may still have healing to do internally and flare-ups to deal with, but I would not change my eczema journey if given the chance because it has led me to where I am today.
Allie Sarwark is a NEA Community Outreach Ambassador who graduated from Carthage College in 2015 and now works as an Events Assistant at the Foundation Fighting Blindness. Follow her on Instagram: @alliesarwark