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: Apr 4, 2022
Last Updated On: Apr 5, 2022
The following represents the opinion and perspective of the author and does not constitute an endorsement or promotion from NEA.
Growing up, my parents gave me the opportunity to explore many extracurriculars. Tap, jazz, hula, acrobatics, hapkido classes and basketball practice used to consume my hours after school during my childhood. When my eczema turned severe, I stopped everything. I was only 11-years-old.
As a kid, I felt like quitting all of those activities meant failure. No one else I knew at the time had to stop doing everything, and I quickly grew jealous of all of my peers still living normal lives. With that toxic mindset, I jumped back into activities too soon, causing even more flare-ups to occur. It was a vicious cycle of seeing myself as a failure, trying to play in my team’s basketball scrimmage, and then missing school due to bleeding and more open cuts leading to skin infections.
Since I had ample amounts of downtime, I spent a lot of time reminiscing about life before my eczema became severe. In terms of exercise and athletics, I missed the social aspect of it all. Social media wasn’t as accessible back then, so going to practices and activities ensured quality time with friends and peers. Without the opportunity to participate in sports as regularly as I had hoped, I felt like a failure, lonely and void of social support.
Over time, my perspective of what it meant to be a quitter or a failure changed for the better. It got to a point where I accepted that my body wasn’t what it once was, and this was part of my life. My parents gave me such a nurturing environment, helping me figure out which types of clothing, materials and routines could potentially make me feel more comfortable. My closest friends would email me after missing a practice or school day to ask how I was doing. My coaches and instructors seemed understanding when I dropped out. Because of all the care I received through these changes, I felt like it was a little less daunting to work through the change. I had thought my severe eczema was a failure, but it was just a change and something I could work through.
My intrinsic motivation for wanting to exercise grew stronger. Around the time I turned 13-years-old, several life-changing events happened to me, besides eczema, and exercising gave me an escape from my thoughts. Having a solid, healthy escape was crucial for me at the time because I was processing a loss of a close beloved friend in my life.
I had never experienced such a heavy unexpected tragedy of losing someone, so the time spent in my mind was unusually dark. Physically having my body move, forcing myself to get lost in a drill or a game allowed my mind to focus on parts of the present that weren’t so grim. However, even though my perspective of why I wanted to exercise changed, paired with the fact that exercising actually helped my mental state, the effects of eczema on my exercise routine still remained the same: it was still so physically painful.
Throughout those stressful years in middle school, my eczema had the greatest impact on my ability to enjoy my favorite sport: basketball. During our games, I had a difficult time figuring out where I was supposed to be positioned during certain plays because I was concentrating so much on the sensation of my sweat seeping into the sore cracks on my skin. Defense was my favorite – especially sprinting down the court to stop the other team during a fast-break. Those fast-paced moments kept my arms occupied and the rush of cool air helped my body feel numb. However, those moments of relief only lasted a few seconds, and soon my skin would be burning and stinging in pain again. I stopped playing basketball and quit martial arts, too; in my mind, I told myself exercising just wasn’t worth the pain it caused me.
When I got to high school, it was like starting over. I was ready to find a new way to enjoy physical activity without flaring, and I was determined to find a new sport.
It wasn’t until I joined track in high school when I found an activity that didn’t make me want to rip my skin off: weightlifting! I had never pursued weightlifting outside of the track team’s requirements to do weight-room workouts at least twice a week, but those sessions opened my eyes to types of exercises that were calm enough for my skin. I didn’t have to sweat profuse amounts for a continuous block of time. I could take breaks and go at my own pace. With this new knowledge, I became more open to accepting this new reality that stretches, jogs and light weights could be something that worked well for my body. I craved that satisfaction of successfully completing a set and then adding more weight. For the first time in a while, I saw my body as strong and powerful.
From that moment on, after discovering weight-lifting, my relationship with exercise started to improve.
In college, I had a better understanding of my own strengths and limits. Eventually, I was even able to play intramural basketball in small doses (just a few games at a time, as I now knew the limits of my skin); I also started going to the gym (a big accomplishment for me as gyms are huge cesspools for staph infections) and I joined a quidditch team. Self-praise, a consistent post-workout cleansing routine and gym towels paired with cool water made all these feats possible for me.
Exercising with eczema isn’t easy. It’s important to give yourself grace, patience and flexibility when choosing your type of exercise. Because in the end, we exercise for our bodies. Exercise gives me mental clarity, strengthens my physical body, and reduces my stress. If the exercise harms our bodies more than it helps, then we need to reconsider what we’re doing to it.
Today, I live in the Bay Area and my weekly exercise regimen mostly consists of yoga exercises found online, doing a few Peloton rides and ending the week with quidditch practice. Looking back to my younger self who thought she had to halt sports forever, I have so much respect for her. She persevered through the challenges eczema had to offer and eventually found ways to work around them. If you have severe eczema and are hesitant to do something you love because of the way it affects you, you can do it. It might not look exactly as you expected, but it will be worth it to try and be creative.
Author Brittany Ann Miranda Masangkay is a NEA Ambassador. Learn more and join NEA Ambassadors.