It’s very easy to think of social media as an anxiety filled shallow dumping pot. While that can be true at face value, it can also be a place of belonging and community for areas that matter the most, like our health.
In 2018, when I was experiencing a severe Eczema flare like nothing I’ve ever gone through before from my scalp down to my feet, bed-ridden from topical steroid withdrawal in my home, going days only being able to get to my bathtub and back to my bed for months at a time, I had no answers, so I anxiously searched for them on the internet.
My searching led to Instagram, where I found people who not only looked like me, but also suffered like me and could help me piece together my personal Eczema health story. I found a community and from there I made sure I was a part of it by creating my page @wokewithinskin, because I wanted to focus on the internal healing necessary for physical conditions of the skin.
When I created this page I did so anonymously, as the piece of me who was still a shy little girl who wanted to hide my skin condition and uncomfortable parts of me was still very much alive. Because we can be whoever we choose to be on the internet, I chose to take this opportunity to be a voice of empowerment and truly share my heart in a place that I knew to be safe because these Eczema friends understood me. They knew what endless days of pain felt like, physically, mentally, and emotionally while putting on a shining smile was like. I wanted to make sure that this community knew that they were a light because of how they shine from the inside out, no matter what was going on externally on their skin. Sharing those messages along with practical tips of what has helped me along the way truly resonated with the community and my page gained national attention for eczema.
The National Eczema Association (NEA) later chose me to be placed on a billboard in Times Square for the summer using the words, “Empower Yourself” as my description. After that I became heavily involved in NEA’s ambassador initiatives and became a patient research advocate. Being a part of multiple in-person events through the NEA is what have maximized the relationships that were originally created online. There is a common understanding that the online community hasas we share our worst times in health with a positive spin. That incredible depth and emotional intelligence is not often found on an everyday basis and people, organizations, and other online communities recognize that.
Having a skin condition can lead to a lot of isolation and even rejection based on how you look if you let it. Seeing other people live, love and thrive in the community with their own friendships or romantic relationships is always reassuring that genuine people still exist. Most of my Eczema flares are not always the first thing people see when it comes to me and I have never fully had a problem with receiving romantic attention, but my concern always came down to, “are they a good enough person to love when I don’t look how they want me to and love me beyond my very obvious physical scars that can get be unattractive and out of my control?” So love and most close relationships in my life have often been kept at an arm’s distance solely by me. I’m working on changing that especially as I see so many positive examples that the Eczema community has.
In the meantime, every day I work on creating lasting relationships based on heart, soul and true connection that’s more important than physical appearance. From that rooted base, I can then begin to shed deeper layers of me, which may come in the form of me sharing that my skin sheds layers of skin that get left behind on sheets and chairs sometimes. It’s a candid conversation at the right time and something that I first have to be confident and accepting of before I can even begin to allow others to be.
Loving yourself is the key to all love journeys.
