One Woman's Journey to Turn a Painful and Isolating Skin Condition Into a Successful Online Community
Ashley Wall’s eczema journey began when she was 2 and developed an itchy patch of skin on her inner thigh. Doctors told her mother it was baby eczema, and that she would likely grow out of it. Instead, the itchy patch began to spread across Wall’s body.
Around age 5, she began topical steroid treatments, but the relief was only temporary. She entered a cycle that many living with eczema can relate to: her symptoms would subside, but as soon as she paused treatments, the flaky, inflamed rash would return with a vengeance. Over the years, these flare-ups have led to bouts of feeling isolated and disconnected from those around her.
Wall, now 29, launched the blog Itchin Since ’87 in 2015. Her website covers all things eczema and skin-related, and has garnered praise from within the eczema community, including the National Eczema Association.
Wall’s eczema is mostly better, she said, but she still struggles with flare-ups, and likely always will. Here, she shares her insight into how she handles eczema and why it’s so important to find ways to thrive and connect even when all you want to hide out at home.
HealthCentral: What motivated and inspired you to launch your blog “Itchin Since ’87?”
Ashley: In 2015 I got laid off from my job. I worked at an awesome start-up company out of New York, but that can be a tough market to break into. They ended up closing their office and going back to London. So I started thinking, “Ok, what do I do next?” And I thought about how I’d always wanted to start a blog to really help people and spread the word about this skin condition.
This is something that people with eczema live with every day, and it’s such an annoyance, but it’s not as dramatic as so many life-threatening diseases out there. It’s not like stage 4 cancer or malaria. But it is a big deal because it affects your life every day. You never know what your skin is going to do. So getting laid off was almost a blessing in disguise then, because I had always wanted to do this.
HC: What was your vision for your website? What did you see that was missing out there that you felt your blog could help with?
Ashley: I wanted to tell my story, because there’s not a lot of conversation about this condition. The information that is out there didn’t always have a personal touch. I wanted to reach out and know more people who have the condition and talk about what I’ve gone through. Growing up I didn’t know anyone else who had this condition. Before social media, I really didn’t have a life. No one talked about this and it was easy to feel like no one else had this. You could find information about this drug or that cream, but no one was tackling it from a mental aspect. So I thought, let’s talk about it. Let’s talk about how it affects relationships. Do you tell your partner or spouse, “Hey you might wake up in a bed full of flakes and you might be watching me scratch all the time?” I wanted hard-hitting topics and also just interesting articles you find online.
HC: How has eczema impacted you on an emotional level? Have you modified or changed parts of your life because of it?
Ashley: Because my skin had rash after rash, I always wanted to cover up because I didn’t want to stand out or to have people ask me about my skin. In school, my self-esteem was hanging on by a thread because no one else looked like me. Everyone else was wearing cute little tank tops and shorts in high school, but not me. My biggest thing was, “what’s my skin going to do today?” I’d think, “Skin please don’t act up today, I have to run in gym,” or something like that. Any way I could hide my skin, I hid it. There were times I would stay home instead of going out with friends. They’re putting on makeup and looking pretty, and what am I going to do? I have horrible skin.
So I became a recluse in high school. I definitely ate a lot, because when you eat, it comforts you. It was so isolating. My birthday wishes always were, “please let me skin be clear,” or “please let me not have a sleepless night.” I know what it’s like to be up and scratching all night, and then have to wake up for class. It’s exhausting.
HC: Tell me about the importance of connecting with the eczema community? How do you encourage people to break out of their isolation?
Ashley: People stay home for a pimple. Imagine what it’s like for people whose skin won’t cooperate? When you have extremely unpredictable skin? I always tell people to get involved, find support groups. There are a lot of forums online, Facebook groups, and other social media. Reddit has a great eczema community as a great resource, where people talk about their skin conditions. I’ve noticed more older people are starting to come out and talk about it. I didn’t know people in their 50s have eczema. They say to me, “You’ve been itching since ’87, well I’ve been itching since ‘63.” I think it’s great, it’s so much better when you connect with others.
HC: What advice do you give to others who are also facing moderate to severe eczema?
Ashley: First of all, know you’re not alone. There are 30 million people in America that have eczema and even more elsewhere around the world. There are so many people, and we’re starting to connect more and more.
Secondly, it’s really important to take care of yourself. Eating healthy helps, but it’s also important to take care of your mental health. And start learning what really works for you. Sometimes people throw up their hands and say, “well, my skin is bad anyway, I’ll do whatever I want,” and they give up. You have to have a positive attitude. You have to be aware of what’s going to set it off. Avoid those and go on with your life.
For people with moderate to severe eczema, be aware it’s probably not going to go away. There is no cure, but you can treat it. You have to embrace it.
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Rachel Zohn is a mom, a wife, and a freelance writer who is striving to find the best way to juggle it all and maintain a sense of humor. She is a former newspaper reporter and a military spouse, so she’s familiar with the stress and anxiety that comes with constant moves and new communities. An insomniac married to an insomniac, she’s spent the last several years on a journey to help her youngest child tackle both migraines and sleep issues. She’s on Twitter at @rachelzohn.