Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Feb 25, 2022
Last Updated On: Feb 28, 2022
My name is Holly, and I live in the middle of a piney woods forest in East Texas. I cannot remember a time when I did not have eczema. Flares came and went, but in third grade I developed a full body skin infection on top of my angry eczema. I was hospitalized for a week before my skin was manageable enough to discharge me.
I had never viewed my condition as potentially life threatening until that moment.
I have learned a lot about eczema and have seen its positive and negative impacts on my life more clearly as I age. One positive is that eczema introduced me to the world of medicine. I will start at Texas A&M’s College of Medicine this July and hope to research and develop new treatments for eczema during my time in the medical field. I find myself often looking for new treatments; I am constantly browsing peer-reviewed articles, clinical trials and the National Eczema Association for any new information.
For the past 15 years, I’ve attended and volunteered at a children’s camp called Camp Discovery. Any child who lives with a chronic skin condition can attend Camp Discovery, free of charge, for a week of fun with other kids who also live with a chronic skin condition.
I started attending Camp Discovery the first year it opened as a second grader. I continued attending as a camper until I was in high school and started working as a junior counselor. Camp Discovery was the first place where I met other people who had skin conditions. It was also the first place where my skin was not the sole focus of interactions.
As a kid, camp provided me with my first normal summer camp experience and it allowed me to build a community of friends I still keep up with to this day. As silly as it sounds, a week-long summer camp changed the entire trajectory of my life and brightened my outlook on my condition as a strength and less of a burden. As an adult, it has provided me the opportunity to continually learn about skin conditions and to give back so other children can have a similar experience to mine. From fellow campers who have become my good friends, to staff members I am also blessed to call friends, to being involved in the Camp discovery community, these have all been some of the most uplifting experiences I’ve ever had to date.
The most challenging part about having eczema is the constant assumption by people and insurance companies that this intense chronic skin disease is “just a rash.” I wish people knew how much work it takes to keep my skin looking somewhat “normal” and that eczema flare ups can be extremely unpredictable and painful. I hope people who already know I have eczema don’t comment on it when it does flare beyond my control. When they do, it makes me feel utterly helpless and like the flare is somehow my fault. Sometimes flares happen and it is my “fault” when I pet a cat or dog, but life is short, and sometimes pets outrank perfect skin.
Another serious challenge about eczema is the glass ceiling with treatments. I am thankful to have a skin care regimen and finances to obtain the products I need to manage my skin, but eczema is a constant battle and impacts my daily life even with a good routine. I am currently on Dupixent, which has been amazing. It is the only medicine that has provided consistent, long-term relief, but is difficult to get approved for.
I think of eczema and other life-altering conditions as pressurizers. Pressure forms diamonds, and it also forms bombs: it depends on the material being pressed. Eczema has caused my relationships with people to become extremely honest and real from the get-go, as I have to communicate how my needs may be different from a normal person right off the bat. It has scared some people as they could not adapt to something that is ever-changing and unpredictable like eczema. It has made most of my friendships and family relationships unbreakable because those people have seen me at my physical worst and made me laugh through my toughest episodes of flare ups.
Besides my own life, eczema has most heavily impacted my parents. It was a source of constant worry for them. It caused them to feel like failures at times because it was so unpredictable and they simply could not always make it better, which is a parent’s nightmare.
There were also many beautiful moments I was able to share with my parents because of my condition, like working alongside my mom at Camp Discovery. She helped run the XP group of camp for children who cannot go into the sun. If they do, they will immediately develop skin cancer and other serious issues. My mom stayed up late to go night fishing and night horseback riding to give them the full camp experience. She has used her journey as a parent of a child with a skin condition to help children and their parents build an understanding community through camp and a nonprofit.
Over time, my parents learned about eczema and all the lifestyle changes needed to help someone who has it manage it. My entire family grew closer because of eczema, and it forced us to communicate on a high level from day one of my life.
My advice to the family members of someone with eczema is simply to listen and absorb, and to ask if someone needs to vent or if they want advice. Living with eczema is hard and frustrating at times, and listening can be the best form of medicine next to laughter.
To the parents who have children with eczema, don’t worry. You will figure it out alongside your child, and it just might surprise you how they use eczema as a strength in life instead of as a disadvantage.
I believe that nothing in life is a coincidence. You have eczema for a reason, and that reason is amazing, but that does not mean all days living with eczema will be amazing. It is not fair that you will have to deal with itchy skin and pain and frustration, but you will be wiser and stronger for it. You will find the products and regimen that work for you, even when it is frustrating and feels hopeless. You will find people who love you when you’re having a Cindy Crawford skin week, and those same people will be there when you’re having a Freddy Krueger skin week. The wealth of knowledge you get from having a condition that is on public display is invaluable. It will help you relate to others and develop empathy. Most of all, keep going, and you’ll be surprised where eczema can take you and what it can teach you.
Author Holly Novak is a NEA Ambassador. Learn more and join NEA Ambassadors.