The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: Aug 4, 2020
Last Updated On: Dec 28, 2020
Everybody else was looking at what college they were going to attend, but I was looking for what my next treatment option was.
During my senior year of high school, I felt like I not only lost control of my body but also my treatment. I felt constantly out of place. I was not quite like everyone around me. In some ways, I was like them, but in other ways, I was not.
I felt like I was living a double life – part student, part patient. During the day, I was attempting to get through school like everyone else. But, sure enough, at night, I was probably having a breakdown in a children’s hospital bathroom because I was told I was out of treatment options.
I’d look around and see a group of girls who I so desperately wanted to be like. They had clear skin, could wear whatever they wanted, and did not seem to have to worry about cracking and breaking open their skin when they moved. And if they did have a blemish on their skin, they could easily cover it up with makeup, which I could not do.
I felt like I was not good enough. Why would anyone ever want to be my friend, or find any romantic interest when they could be around someone else? Someone who did not have red, swollen eyes, cracked, bleeding skin, and needed so many accommodations?
My mental health was deeply affected by my constant bullying of myself. But after years of therapy and learning to self-love, I came to realize something. I am, in fact, and always have been, good enough.
I am more than my skin condition. I’m me. As my mother always told me, I may have eczema, but my eczema does not have me. (With that being said, I still have my hard days.)
I still have to brace myself every time I leave the house. I shouldn’t have to, but I do. I should not have to explain to strangers why I look the way I do, but it still is a daily occurrence. I should not constantly be waiting for everything to fall apart, but I am.
My mental health is still tainted by the sudden flares, failed treatments and constant comments from people I don’t know. Even after 22 years of living with eczema, I am still realizing just how much it impacts every part of my body and every part of my life.
My chronic, severe eczema is now manageable. In fact, it is significantly better than it has ever been, but my mental health is still recovering from the years of trauma my eczema put me through.
All my life, I felt like a ticking time bomb. My skin could be set off within a few seconds by factors I could not control. I would go to bed with only a mild eczema outbreak but wake up to blood-covered bedsheets and cracked, oozing skin – all within eight hours!
I never know when my eczema is going to flare, but I know it is coming. Whether that flare will be caused by fragrances, cleaners, stress or seemingly nothing, I have no say in the matter. Sometimes what hurts even worse than the eczema outbreak is the fact that I have to explain to the people around me why I look the way I do.
Because of the years of unpredictability, I constantly feel like I’m on edge; as if something could go wrong any minute and I have no control over it. Just like how I have no say in whether or not I want to flare.
Every time a treatment seemed like it was going well, something went wrong. Whether it was that I started to feel the pain from an unforeseen side effect, or that my treatment would stop working altogether, something was going to go wrong. I became so used to something going wrong that I expect that to happen in every part of my life. If I cannot even handle my illness, how am I going to be able to handle everything else in life?
My anxiety would consume me, and I would not want to leave my house at some points. I constantly had racing thoughts such as, “What if someone sprays perfume? What if I flare? What if my eyelid eczema breaks out so badly that it starts bleeding, and then I can’t see? What if someone I know sees it?” These thoughts still keep me up for nights at a time.
Thankfully, with the help of my supportive family, I am starting to overcome my anxiety and fear of life. I started to go to therapy where I learned how to cope with my racing thoughts and poor self-image. I began to read books about how to appreciate yourself and all of your flaws as well as journaling my thoughts when they started to overwhelm me.
My mental health is becoming better than it ever has been, and I would like to thank my eczema for everything it has taught me. I am now a stronger person because of what my eczema has put me through.
Instead of thinking of my eczema a monster who is trying to ruin me, I am now thinking of it as something that can actually help me in life. It can let me know when something is wrong with my body, and it even taught me countless life lessons.
Mental health and eczema are heavily tied together, and it is important to treat and tend to both. I am forever grateful that I know that now.
NEA Ambassador Sam Bittner is a 22-year-old college student with chronic, severe eczema who hopes to pursue a career in the medical/laboratory sciences.