how to “solve” eczema

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Over the years I have gotten so much advice from well wishers about how to cure my eczema/topical steroid withdrawal (because in my case, the condition that changed my life was TSW, which was caused by the treatment of eczema). While some of the suggestions may be useful, more often than not they aren’t, and it may not be because the advice is something I’ve already tried or something outlandish. It may be more so because advice about a single aspect in my life to change doesn’t do anything impactful, because eczema’s root cause can be anything but singular.

I know some people are lucky: they remove the allergen (mold, gluten, soy, eggs, nightshades, dairy, dust), they decrease their stress, they exercise more, they find a supplement that really works, and bam, no more eczema. Unfortunately, I am not one of those people.

My root cause seems to be tied to many different aspects, from overuse of topical steroids, to unresolved emotional issues after familial deaths, to increasing sensitivity to foods (on top of food allergies I was born with), to increasing discomfort with specific exercises and a sensitivity to heat and sweating, to insomnia and other sleep issues, etc. So being given a new product to try doesn’t really solve the other issues preventing me from quickly recovering from each flare.

What I do find interesting, is people that have learned to live with eczema (and/or topical steroid withdrawal) and the various lifestyle changes they have done to help keep their flares under control. I came across a post a while back called The Metaphysical Meaning of Eczema – Do People Get Under Your Skin, which I thought would just be talking about how my emotions cause my eczema, but I was pleasantly surprised to read the author’s inclusion of a whole host of other things she does in her life to help. Because yes, I am sensitive, both skin-wise and emotion-wise (I can now flare-up from heightened nervousness from public speaking, or due to misunderstanding over trivialities at the store) but, and I am indignant about this, my sensitivity didn’t cause my eczema, and it definitely didn’t cause my topical steroid withdrawal. It probably is the reason it takes me so long to heal (on top of the constant flow of changes in my life… e.g. getting married, moving 4 times, leaving my graduate program, buying a house, having a baby- all within the last 3 years). I have learned to be zen about skin-related sleep deprivation, about hives from foods I normally can consume, over having to adjust all forms of activity I enjoy, over forgiving myself for making “mistakes” that then provoked a flare, etc. I know I still have a ways to go to consistently help my emotions flow naturally and not build up stress, but I have made immense progress and my skin doesn’t always reflect that. Hence why I get up in arms when people try to reduce my condition down to me “just not doing x”.

Woof, okay so now that I’m done that rant, back to my initial idea around today’s topic. The point is, eczema can be a multifaceted b*tch of a condition, with varying twists and turns that dictate how it goes for different people. If you don’t believe me, try reading the experience of Daniel Boey in his book Behind Every Itch is a Back Story: The Struggles of Growing Up with Rash, or peruse any number of personal blogs out there these days about someone going through TSW.

My point is that while I am happy for people who find ways to rid themselves of eczema flares through a singular method, I find it frustrating when we see the gimmicks of “anyone can cure their eczema if they just do x!” and find it somewhat damaging to reduce all people with eczema into the same world because said singular solutions don’t work for everyone. I appreciate people that talk about the myriad of changes they have had to do, because it shows that the cause of eczema, as it is still unknown for the most part, requires different management for different people, hence why it is so hard to “solve”.

eczema representation

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Though eczema isn’t the most glamorous of conditions, there is a growing body of representation of people with eczema in various social mediums, which is amazing because the more people that talk about our lives with eczema, the more information, studies, and community are built around it. As I come across more examples, I’ll update this post with the caption NEW.

 

TV SHOWS/MOVIES/DOCUMENTARIES/THEATER

  • One of the most notable now is Peter Moffat’s HBO series, The Night Of, which features the character John Stone, who suffers from aggressive eczema on his feet. Throughout the show we see him try various techniques to manage his eczema including bleach baths, Chinese medicines, airing his feet out, slathering Crisco and wrapping his feet in plastic wrap, UV light, etc.

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  • (NEW) There is also a theater production called ECZEMA! created by Maria Fusco that embodies eczema in a creative way through writing, plays, music (including a musical backtrack of the sounds of Fusco scratching). There’s an interesting article written about it here.
  • (NEW) Briana Banos, a former performer and aerialist has created a documentary called Preventable: Protecting Our Largest Organ, to educate the medical field all about the horror of life with topical steroid withdrawal, and why topical steroids shouldn’t be so freely prescribed.

 

BOOKS

There are also a handful of personal storytelling books about people’s own experiences with eczema, with the authors all having very diverse backgrounds. For example:

And we’re also seeing a growing movement of children’s books about eczema such as:

  • Camille’s Itchy Twitchy Eczema by Candis Butler
  • I Have Eczema by Jen Greatsinger
  • Emmy’s Eczema (Dinosaur Friends) by Jack Hughes

 

COMICS

These prove a lot harder to find (which is unfortunate because I love webcomics!) but here are the two I stumbled across by Ms. Yoshimi Numajiri, (found on Tommy’s Skin of Rose blog).

 

ECZEMA ENTREPRENEURS

You also see a lot of entrepreneurs, whether they are doing eczema coaching of some sort, or have created a specific product/ product line. A few include:

conqueror-balm-photo-24_1024x1024@2x.jpg(photo source here)

INSTAGRAM

Naturally instagram has become an amazing platform for expression. There you can find awesome people including most of the entrepreneurs mentioned above.:

 

YOUTUBERS

Of course with youtube we have vloggers too- some that focus all on eczema and others that talk about eczema and its effects around the other aspects of their lives.

  • Zainab Danjuma
  • Brookie Beauty
  • Josh Wright – a pianist and piano teacher that made a video talking about his experience with eczema and TSW and what he used/did to get through it. He also made a post about it here.
  • Dr. Nina Ellis-Hervey – she gives advice about her general body care routines, and this particular video shows how she manages her eczema. She also includes how to make a homemade body butter.

 

BLOGGERS

And of course, there are tons of blogs out there made by dedicated individuals who are spreading the word about what living with eczema is like:

 

MODELING

More and more people are also trying to spearhead showcasing diverse bodies, especially in modeling.

  • Missguided – though not eczema-specific, a new part of their #KeepOnBeingYou movement has models showing off their bodies regards of having “imperfect” skin with the #inyourownskin campaign.
  • (NEW) Dove DermaSeries – creating a movement to help women “make peace with dry skin”, Dove specifically selected to have models with all sorts of skin conditions to show better representation of skin conditions and subsequently to help women feel comfortable in their skins

 

So if you are out there feeling like you suffer from a condition that no one gets, or that isn’t really seen in the media, don’t feel alone! There are lots of us out here each expressing ourselves and living with this condition in our own ways, just waiting for you to find us. And many of us are open to people reaching out as well. 🙂