X Out Eczema Together: My Itchy Dive into Eczema Online Communities

“Our skin is a window to our Type 2 immune system“

I type ITCHY into a password box and immediately hear the familiar ding of a bell, the sign of being whisked from a Zoom waiting room to the main chat room. Suddenly, twenty-two smiling faces greet me — people of all genders, skin complexions, and, as I would soon learn, accents. “Hey there, I don’t recognize you!” “It’s been a few months, hasn’t it?” “Nice to see you with clothes on — not like our usual hookups.” After exchanging hellos and small quips, we get right into business. Everyone takes turns introducing themselves and their experiences with eczema, doctors and dermatologists, and topical steroid withdrawal (TSW). On Zoom, people listen with empathy, smile with conviction, and shed tears during passionate stories. Even as a stranger in a sea of new faces, I feel immediately included.  

Only one day earlier, while browsing the eczema subreddit, I stumbled upon a flyer for “The Greatest Last Minute World Wide Social Distancing TSW / Eczema Virtual Meet Up Ever.” Against a backdrop of Amsterdam’s beautiful sunset, the flyer showed six different time zone start times, instructions to download Zoom, and who to direct message for more details. I knew I had to join this call. This was my chance to meet moderators and influencers in the online skincare and eczema community. I had been reading about eczema influencers days earlier, and I knew that hearing their first-hand opinions on healthy eczema communities would put a face to key voices and opinions.

So with callers hailing from Belgium, Paris, New Jersey, and California, I jumped online to observe and participate in a diverse and knowledgeable group. People flocked from all different occupations too: there were painters, current and retired restaurant workers, and social media influencers. One person on the call tells us that they’ve consulted with the director for their crime television show The Night Of, which portrays the life of attorney John Stone and his struggles with eczema. People gush about their positive experiences on Instagram, their supportive doctors and the online eczema support groups on Reddit and Facebook. With every story and every introduction, I start connecting the dots between their stories and my own.

For as long as I can remember, I have struggled with dry skin. Before leaving the house in middle school, I checked on my lip balm supply, tossing extra into my backpack in case my lips turned bright pink and chapped. At night, I lathered Head & Shoulders on my scalp to prevent dandruff from shedding and distracting myself and others. Despite all my attempts to hide my skin, my dryness didn’t go unnoticed. In my seventh grade English class, I remember my classmate Peter asking me, “Why is your skin so dry? Do you know it’s starting to peel?” While I don’t recall my exact response, I remember feeling extremely offended, frustrated, and self-conscious. My sister Julianna (Jules), who also experiences eczema flare-ups, remembers how people with no knowledge of eczema would randomly comment to her, “your skin looks a snake” or “your skin is so scaly.” Even today, random strangers will comment on my skin from time to time.

Prior to writing this healthy online community ethnography, I had never shared my story, and god-forbid photos of my eczema face, publically on social media. Social media platforms incentivize and pressure its users to like people’s posts, with endless scrolling and filters that mask uneven skin complexions. As a result, documenting my battle against eczema through pictures and words never felt like an appropriate post for a personal timeline. But the more I researched eczema communities, talked to people with eczema, and explored eczema online accounts and subreddits, the more I realized that people with eczema can thrive on social media surrounded by empathetic supporters — the perfect storm for a healthy online community.

For the 30 million Americans living with eczema, The Nation Eczema Association website provides suggested resources and videos, advocacy projects, trusted drugstore products, and academic research for those seeking extra guidance. The National Eczema Association’s website states that eczema is “the name for a group of conditions that cause the skin to become red, itchy and inflamed.” In other words, there is no one universal eczema. In fact, eczema encompasses many different skin conditions, such as atopic dermatitis, contact dermatitis, dyshidrotic eczema, nummular eczema, seborrheic dermatitis, and stasis dermatitis. In an effort to dispel other rumors, the site states that eczema is not contagious and only triggered by an individual’s immune system, which is most prevalent in young children.

The exact cause behind eczema is unknown, but doctors have pointed to environmental triggers, stress, and genes as likely causes. The Nation Eczema Association states “there is no cure for eczema but there are treatments.” Traditional treatments include bathing, moisturizing, and applying topical steroids. But because treatment is not a one size fits all solution, hundreds of purported eczema treatments claiming to heal patients in distress circulate the web. To the first time eczema patients, this large variability in treatment success may be disheartening. Conflicting treatment information by different dermatologists only can add to a patient’s confusion and willingness to seek help.

Dr. Patrick Lee, a practicing dermatologist of over twenty years and skin cancer surgery specialist, says 10-15% of his patients come in with an eczema related issue. However, he wouldn’t be surprised if a general or pediatric dermatologist sees around a third of patients with eczema. Dr. Lee says that many of his patients often obtain advice from general practitioners or doctors who do not specialize in skin. Unfortunately, non-dermatologists may misdiagnose skin issues and prescribe treatments that exacerbate skin issues, which can ultimately erode a patient’s trust with doctors and self-esteem.

This narrative is all too common. Many eczema patients cycle through multiple dermatologists, allergy specialists, and general practitioners, even in the course of one year. One person at the eczema and TSW meetup expressed disillusionment with her current medical advice: “I do not trust doctors at all, and dermatologists are awful. One said I could go another day without steroids at all.” While patients tired of unfruitful advice and bankrupted from expensive medical bills may reject suggestions by dermatologists, many participants in the Zoom did say they eventually found a dermatologist that suited their needs, and the pain of searching for the right doctor was worth every penny.

A doctor’s primary duty may be to assess and diagnose, but doctors and dermatologists can play an even larger role in skincare recovery: lifting eczema patients’ spirits. According to Jules, the most important trait a dermatologist must have is compassion:

“It’s not just a skin condition. It’s a complicated lifestyle. Sometimes you’re so itchy you can’t go to sleep. Sometimes you can’t focus in class because of it and sometimes you’re just bleeding all over the place cause you’ve scratched off so much of your skin. Just saying, ‘Slap steroid cream onto it’ isn’t really a sufficient response. I’d prefer somebody who is like, ‘Here’s what you do when this happens, here’s what you do and that happens.” 

Dr. Lee agrees that sympathy, compassion, and empathy are extremely important traits to the practice and online communities can provide an additional healthy outlet for facilitating conversations with people who’ve walked in your shoes. 

Eczema patients and advocates routinely flock to Reddit, Instagram, and Facebook to post about their own journeys and follow other people’s journeys. For some, the online community provides an escape from family members, friends, doctors, and coworkers who are less informed about and insensitive to eczema. 

Reddit’s most popular eczema subreddit is r/eczema, which was created on May 9, 2010, and has 26,500 members as of March 2020. Other eczema subreddits are /r/EczemaUK, where users provide a more global context to the US-centric eczema discussions, and r/eczaMEMEs, a subreddit entirely dedicated to eczema memes. More platforms offer similar forums for discussion. On Instagram, eczema and skin influencers (#skinfluencer), skin podcasters, and medical gurus have galvanized large followings. Patients with eczema have created separate skin accounts from their personal accounts to chronicle their skin journeys and share their stories in Instagram story albums. The Eczema Support Group on Facebook, which boasts over 36,000 members from all over the world, is the largest online support group and publishes posts regularly. Without a doubt, the online eczema community is popular, large, and bustling.

Jules first introduced me to r/eczema, which was the first online eczema community that I joined. Jules’s journey to the platform happened unintentionally, but it fit her needs perfectly at the time. “I was really struggling with my eczema at the time, in early 2019,” she says. “I found this really awesome subreddit that showed people’s journeys of their skin recovery and also tips and tricks on how to deal with eczema. I found that really comforting.” In one Reddit post titled “Anyone else addicted to scratching”, user not4u2no posts, “There’s something deeply satisfying about [scratching] which I would loathe to admit outside of this group.” Similarly, in the earlier Virtual TSW / Eczema Meetup, one member posed the question, “Do you have doctors who are supportive?” After an emphatic NO from the host of the call, others shook their head slowly. As Jules, user not4u2no, and the TSW virtual group recognize, it’s reassuring to participate in a large community that can immediately understand your problems, and r/eczema fills that niche.

Even after scrolling on r/eczema a minute, it’s easy to see the sheer amount of diverse posts and users on r/eczema. During late March, I saw posts encouraging users to drink water, posts admitting to loving scratching and missing “beautiful skin”, eczema poems and eczema art, and posts with photos of a person’s eczema journey. In this subreddit, no one person dominates the discussion or asserts their opinions as better and more valuable than the rest of the group. For someone with eczema, the posts never cease to be refreshing and relatable.

The most popular posts on r/eczema are the photos and memes. Users and replace titles and captions with experiences that only eczema patients can understand. In a recent post on r/eczeMEMEs, the expanding brain meme follows this ascending order: Food, Sex, Drugs, and Scratching Your Eczema. To the non-eczema patient, this order might be non-sensical and ambiguous — how can an eczema scratch be more addicting than a potent and illicit drug? However, for an eczema patient, this meme exposes the extreme urges that eczema patients endure, ones that people without eczema will never comprehend. These memes unify and strengthen the bonds of the eczema patient community.

After a year of surfing r/eczema, Jules praises the outpour of love from r/eczema’s supportive community. “If somebody posts a really bad picture, most people will comment, ‘Oh it’s going to get better,’ or try to give advice such as, ‘Have you tried this?’” Or they sympathize.” Jules pauses for a moment, contemplating whether she should something more. “Although when somebody posts a picture and it’s not eczema and they ask, ‘Is this eczema?’, they get thrashed on, absolutely toasted,” she says. “I downvote the ones that are rashes from poison oak or whatever. They’re like, ‘Oh my god, is this eczema?’ No, clearly not!”

Dr. Lee also supports online communities, but cautions against health misinformation. “Skincare is a very broad category that is probably a little bit dangerous because it’s one person or several people’s recipe that works for them,” he says. “I would say that for the skincare advice that people get, you have to be aware of people that are trying to sell you their products.” Dr. Lee also warns about people he calls online conspiracy theorists, those with unabashed anger towards the healthcare system who advocate destructive remedies: “a lot of times, people in online communities who have an anger sort of thing, they promote therapies that supposedly fly in the face of what they think a corporate issue.”

I suspect the rules on the r/eczema main page play a large role in sustaining healthy dialogue and a non-combative atmosphere. The r/eczema moderators have pinned a post on the page that asks users to “PLEASE READ RULES BEFORE POSTING.” The ten rules, listed on the right side of the r/eczema subreddit, range from “Please Don’t Ask for a Diagnosis” to “No Marketing” to “Posts and Comments Must Stay on the Topic of Atopic Dermatitis.” 

The rules most explicitly related to fostering healthy communities are rules five and eight. Rule Five is “This community has high standards for empathy: Eczema is frequently accompanied by physical pain and social anxiety. Kindness, consideration, and compassion are encouraged when replying to posts.” Much like Jules observed in her own experience with the subreddit, many r/eczema users value sharing their personal experiences and struggles with other users. One user MOONSfan posts, “Please suggest a quick remedy for this. I would have gone to my doc if there wasn’t a curfew in place.” While there are only 7 upvotes, there are 17 comments from different users, which suggests that users prioritize dialogue and active storytelling rather than passive upvotes. As an even more obvious signal to commitment, some users will respond with paragraphs to questions on threads.

Similarly, Rule Eight “Harassment, trolling, and spamming are not tolerated by this community” encourages troll-free dialogue. In my experience with the r/eczema community, I have not once seen any negative interactions or petty fights. When I messaged the moderators about my post, they responded in less than three hours, which indicates their sense of responsibility and urgency to make users feel safe and heard. The posts that most likely to violate Rule Eight are ones titled “Is this Eczema?”, which Jules highlights in her interview. In one recent post, user Treebird97 asks, “is this eczema,” to the subreddit, which also includes a picture of their back. While four users comment, they use short and curt language, a stark change from other posts, to answer Treebird97’s question. User Beno1258 even surmises whether the picture is human: “No, get that checked out. And god forbid, if that’s a potato I hate you.” However, none of the language in the comments is obviously offensive or meant to harm and only tries to point the initial poster in the right direction.

To further my involvement in the r/eczema subreddit, I decided to post and potentially interact with more users through interviews. (And although I was scheduled to interview a user named Dolores from the eczema subreddit, this interview happened after the deadline for this paper) Before I posted, I conducted a quick data analysis of the types of posts and summary statistics for the subreddit. I wanted to use this knowledge as a hook for my post and to satisfy my general curiosity. I finagled with Reddit API and the PRAW library to collect data for around 4,000 posts on r/eczema. I organized the data into hot, top, controversial, rising, and new posts. Ultimately, Here are some of the findings I garnered from my data analysis and ultimately included in my Reddit post:

• Nearly half of the top posts on this subreddit are images to outside sources such as imgur! This includes memes, pictures of eczema, and pictures of our beautiful moisturizer collections.
• A few summary stats from a little over 4,000 posts: our posts have a mean score of 42.98, mean number of comments 11.55 (we’re engaged!), average title length has 57 characters, average body length has 516 characters (we tell stories!), 64% of the posts have some sort of body text, and about 24% are links to offline images.
• Most r/eczema posts have around 7 average comments (new, top, rising, and controversial) but the top posts have around an average of 24 comments!

While I didn’t have an opportunity to personally interview strangers from the subreddit, I’m glad I could attend the last-minute Zoom call and interview my sister Jules and Dr. Lee. Posting in the eczema group and yielding several upvotes jumpstarted a desire to become more involved in this online and vibrant community. The subreddit rules, healthy dialogue and relatable pictures, stream of memes, and opportunities to bring offline conversations to real person meet-ups ties this community up into daily present, one that I’m always pleasantly excited and surprised by every time I open it up.