How Did We Become Eczema Advocates or a #Skinfluencers?
The advocates at AtopicDermatitis.net are all patients living with eczema or caregivers of children with eczema. Have you ever wondered how they got here? Or what made them want to advocate for the condition? Finding the courage to openly share their stories and journies with eczema was the first step, especially in a world that makes it hard to talk about.
So, our Editorial Team asked them how exactly they got their start advocating for eczema, even if it wasn't here on AtopicDermatitis.net. This is what they said:
I still question if I can be an eczema advocate
Cora Lyn: When I mentioned my eczema in a page I wrote for MacularDegeneration.net, Courtney invited me to write for AtopicDermatitis.net. It took a lot of soul-searching to decide, and I still at times question if I can actually do this.
I was inspired by a friend with eczema
Peter: I was told by a friend, Terry, about this opportunity to share my experience, she too has the same condition as me. But what I admire about her is she is very active in tackling her issues and showing off her best that is what inspired me to share my story as well.
I never intended to become an eczema "advocate"
Ashley:Sharing my story and who I am authentically and vulnerably earned me the title of an eczema advocate. I never intended to become an eczema "advocate." It was a title given to me by others who saw my work as advocacy. Becoming an eczema advocate is a choice that I make every day and every time I share my story about eczema.
I wanted to help other caregivers
Karen: As a teacher, I encountered many students who experienced atopic dermatitis. Their parents were often frustrated in their efforts to get the help they need. I've always talked to families about how to find answers. While attending an HU Connexion meeting, I opted in to the AD small group meeting. There were only 2 other advocates in the circle, and they were new. It was great to connect with new moms, encourage them in their writing, and be able to write about my family's varied experiences with atopic dermatitis at the same time.
Blogging is my hobby and it feels right
Harrison: Owing it all to my hobby and interest in blogging online, I started advocating my personal experiences for fellow patients through a website dedicated to eczema. It includes tips and tricks, nutrition information, and basically anything useful for a patient. I advocate because I think it is only right to do so.
I wanted to offer hope and inspiration to other eczema patients
Jude: I always thrived and loved writing about the Human Experience and inspiring others through my journey. I had been introduced to AtopicDermatitis.net through a mutual eczema traveler. Up until that point, I hadn't considered opening up though I immediately said yes to the opportunity because I knew it was a way to connect with others and offer hope, light, and inspiration.
I wanted to connect with eczema warriors through social media
Linette: I knew that I wanted to make a big impact - go big or go home, so I forced myself to figure out how to use Instagram (I had Instagram but only posted 3 times in the span of 5yrs) since I was homebound and knew that social media was a necessary evil. So I made sure to post every day about my condition, and I used all 30 hashtags, including all popular eczema-related hashtags. I posted to Facebook, Facebook groups, and Reddit as well. Anywhere where the community had a presence, I was there. Interview and speaking opportunities arose and I took them. The National Eczema Association reached out to me and I reached back. AtopicDermatitis.net reached out and I reached back as well. It’s been a wonderful journey ever since.
I started sharing my experiences with eczema as a kid
Jeff: As a child I was part of a Protopic study that provided me with the opportunity to share some of my experiences with the disease in a book called, “Under My Skin: A Kid's Guide to Atopic Dermatitis.” More recently, I attended the National Eczema Association conference in Chicago (2018) with my Dad. While at one of the breakout sessions, he connected with a Health Union representative that he later introduced to me. I expressed my interest in becoming an advocate for AtopicDermatitis.net and the rest was history!
I started anonymously sharing and the rest is history
Raelle: Shared my story on Instagram ANONYMOUSLY at first, with the intention to share the internal aspects for healing from the inside out. Then I finally shared who I was on that page when National Eczema Association had a nationwide call for people to share their images with eczema for their Times Square video billboard. I was chosen and since then I saw even more opportunities to share my voice and how much it is needed, even though I was encouraged by other advocates who were already online.
Editorial Note: If you are interested in writing for and connecting with other eczema patients on AtopicDermatitis.net, please e-mail us at firstname.lastname@example.org.
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