How Eczema Content Online Reveals The Best And Worst Of Social Media
Something I have been itching to write for a while *groans*
I have been reading a lot about Eczema lately, an inflammatory skin condition that is estimated to affect 30% of the United States population and results in dryness, itching, and rashes. I have no medical qualifications, but I do use a lot of social media, so I thought I would use social media to write about all the useful, controversial, and possibly dangerous content I have found online about it.
In a nutshell, I wanted to write about:
- Medical experts
- The corticosteroid debate
- Dupixent
- How social media is promoting a lot of useful information and a lot of not-so-useful disinformation, and how this can serve as a critique of social media as a whole
The Steroid Debate
If you are like me, you were probably motivated to find very quick answers to questions like how to treat Eczema, why Eczema exists, and why Eczema can possibly go dormant for years before resurfacing. At least according to my dermatologist, no one really knows why it can go away.
There is no cure for Eczema. If you spend any amount of time reading about Eczema on social media, you will probably encounter people who write about Topical Steroid Withdrawal.
Topical Steroid Withdrawal is…controversial. To treat Eczema, you can use anti-inflammatory drugs called corticosteroids. Many simply refer to these as steroids, but I will call them corticosteroids to distinguish from anabolic steroids (performance-enhancing drugs), which they are very different from. Corticosteroids have varying strengths; you can purchase a mild form called Hydrocortisone over the counter, but doctors prescribe stronger ones.
My motivation for posting this was not that I considered myself medically qualified, but that I wanted to point out that lots of other people who write about Eczema on social media are not medically qualified, either.
Eczema.org defines Topical Steroid Withdrawal like this:
There is also a group of symptoms called topical steroid withdrawal (TSW) reactions, referred to by patients as ‘topical steroid withdrawal’, ‘topical steroid withdrawal syndrome’, ‘red skin syndrome’ or ‘topical steroid addiction’. These are severe reactions that can occur when moderate- or high-potency topical steroids are stopped after prolonged use, usually more than a year and usually to treat eczema. Patients experience symptoms worse than their original condition
— Source
This is a very different tone from the one made by the National Eczema Association, in this post:
“It touches every facet of your life,” explains Briana Banos, who has lived with topical corticosteroid withdrawal for years. “It means quitting jobs or needing some sort of physical and financial support — a burden left to a family member or spouse. Emotionally, it is unbearably exhausting, and causes an avalanche of issues: loss of self, passion, partners and peace. And, without being able to truly thrive out in the world (be it months to multiple years of isolation) a TSW sufferer can be impacted harshly with the destruction of their social life or social outreach. It is an indefinite prison sentence and a type of suffering I wouldn’t even wish on an enemy.”
— Source
In general, I consider the National Eczema Association a valid source. They were explicitly cited and credited in my favorite book on the subject, which was written by a dermatologist. I appreciate them for hosting a podcast in which they interview dermatologists, nutritionists, and other people. Had they not been credible, I doubt brands like Aveeno and Gold Bond would bother writing “Accepted National Eczema Association” on their labels. But the wording above is pretty extreme.
The Topical Steroid Withdrawal (TSW) Debate
Topical Steroid Withdrawal is probably the single hottest “eczema topic” on social media right now, so popular that even National Geographic wrote an article about it. It has divided many people into two conflicting camps, which I will call the “pro-corticosteroid” and the “anti-corticosteroid” camps. I will try to refrain from stating which side I am on, though I may inadvertently make it obvious.
What both sides likely agree on is that corticosteroids have side effects. This article alone lists side effects like skin thinning, high blood pressure, and weight gain, though it is important that the latter two are for Prednisone, which is taken orally. I think a dermatologist named Peter Lio summarizes it pretty well in his National Eczema Association interview. He is very conservative when it comes to corticosteroids, so I am sure he does not speak for everyone, but he never prescribes prednisone for eczema unless it is an emergency. Otherwise, he tries to use the topical form and something he calls “dampening” to put patients on corticosteroids, then take them off and hope flareups have decreased in severity. If they think they have to be put back on, he looks into other treatments such as Dupixent.
Corticosteroids are often prescribed for just 1–2 weeks, and longer use increases the risk of side effects. The National Eczema Association received so many inquiries about TSW that they wrote a paper, but from their limited data they could only conclude that corticosteroid withdrawal, though real, primarily occurred in longterm inappropriate use of topical corticosteroids.
I think this Reddit thread exposes the worst of both camps:
On one hand, I think many pro-corticosteroid people are overly dismissive of anti-corticosteroid people. They are frequently compared in threads like this one to anti-vaccine people, which I consider an unfair comparison because Eczema is not contagious, so refusing to take corticosteroids will not increase the risk of giving others Eczema. What is potentially harmful is if someone who is anti-corticosteroid influences someone else not to take the medicine when they could have benefited from it with proper use.
One person in the Reddit thread above writes that “doctors won’t ever tell you about TSW,” claiming not just that some doctors are dismissive of it but that no doctors you encounter will mention it. Someone adds to the thread, comparing doctors who prescribe corticosteroids to drug dealers who distribute cocaine and neglect to mention its side effects.
Why This Is Concerning
If a user looks up “Topical Steroid Withdrawal” on Google Images or social media sites like TikTok or YouTube, they will find an enormous number of results. One person here, who received 1200 likes, posted on Reddit to raise awareness on Topical Steroid Withdrawal. They state that people with TSW should limit water intake to make blood thicker. This falls in line with No Moisture Therapy, a treatment anti-corticosteroid people recommend that consists of reducing water intake and moisturizers, but even the website they link recommends you consult a doctor before using No Moisture Therapy. If your doctor recommends that you treat your Eczema by reducing water intake, fine, but one of the anti-corticosteroid users I listed earlier stated that doctors will not acknowledge TSW and the only way to find out about it is on the Internet (they self-diagnosed).
That being said, there is also a reasonable possibility that Peter Lio is correct, and corticosteroids are being overprescribed.
The Pros And Cons Of Social Media
There is still a lot that science has not answered about Eczema. No doctor I have seen has been able to tell me what caused it, and no doctor anywhere has invented a cure for it.
Still, social media sites like Reddit can be extremely useful. Three separate doctors recommended Dupixent to me, which is prohibitively expensive for many people. Through Reddit I learned about insurance accumulators, and it allowed me to ask my insurance company and pharmacy relevant questions.
Dupixent is an extremely expensive biologic injected into the thigh. I don’t know if it will work, but I am grateful it exists.
Closing Thoughts
Sometimes, social media is used to promote actual scams. Sometimes this is targeted at people with Eczema.
For the most part, I don’t think this is what we are seeing here. Topical Steroid Withdrawal is still being studied. From all the pictures, videos, and textual posts made by people who say they are suffering from TSW, I think that a lot of people are clearly suffering and are genuinely trying to help other people. Corticosteroid and anti-corticosteroid people are generally drawn to the same threads because they have the same fundamental condition: Eczema.
At times, though, I do think people on both sides are guilty of spreading misinformation. Some people oversell corticosteroids without emphasizing proper usage and side effects, and some people are very quick to give others medical advice about ignoring their own doctors.
Social media thrives by maximizing attention, so it is incentivized to keep the controversy going. What we need is civil discussion and research, not two disparate echo chambers.
