how to live your fullest life with eczema

woman stands on mountain over field under cloudy sky at sunrise
Photo by Victor Freitas on Pexels.com

Two days ago I was working on a post where I mentioned a book I was reading (The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho) and how it explained that Koreans have a different mentality about their skin. Their attitude is that skin care regiments are to be enjoyed, rather than thought of as a chore. My thoughts were that it would be amazing if there was a way to cultivate such an attitude into the lives of those with eczema, to get us to see managing our skin not as a burden, but as something we could learn to embrace and therefore lovingly treat ourselves during our routines. My hope is that the better the attitude we can have about the inevitable (having to put in a lot of time to manage our skin), the better we can mentally feel about living with eczema. Speaking of living with eczema…

I watched a webinar from the National Eczema Association that same night called Unhide Eczema: Storytelling for Healing. It features 3 speakers, including Ashley Lora, Alexis Smith, and Mercedes Matz who each went into detail about their experiences with eczema and how they found community through opening up about their individual journeys living with eczema.

The major takeaways from the webinar were:

  • show the world your skin. Don’t hide away and fear the general public’s response but rather embrace your skin and “unhide eczema”,
  • change how you talk about yourself and eczema. Don’t say you are suffering from eczema, but rather say you are living with it. The power of words is remarkable, and having an empowered attitude or at least one of acceptance is so important, especially as it is a part of you. So change the way you talk and change the way you think about yourself and eczema, and
  • speaking of empowering, empower yourself and others by sharing your story. You’d be surprised by how many people have eczema and need to know they aren’t alone.  The power of telling your story might even help you heal!

The idea of empowering oneself when you have eczema and sharing your stories brought me back to an article I had recently stumbled upon about a woman who cured her eczema through faith. Specifically, it was this woman’s power of belief that drew me. I think it can be so hard to find a way to keep believing you will heal when you’re stuck in the midst of a bad flare, and that is when it becomes essential to find your voice and talk about what you’re going through. Whether this is sharing a story about being miraculously cured, or of just finding a product that made you feel just a tad better, the ability to speak up and open up abour your experience is such a powerful tool. For one you are giving yourself a voice, regardless if it’s driven by frustration or elation.

You’re also you’re giving yourself a chance to build community (which I’m sure by now you know I’m obsessed with, but for good reason). Community is so important in this day and age because not only can you pass down the wisdom of the products you’ve tried, but you can continue to reinforce that you are not alone. I can’t state the value of this enough.

Just imagine you are in a public place (let’s say a movie theater) and you start to scratch an itch on your neck and you are feeling self conscious because you didn’t cover up your eczema with clothing layers today, but instead of sinking into your seat or averting your eyes, when you notice the person sitting next to you watching you scratch, you speaking speak up (before the lights have dimmed and the previews have started of course). And said person is like, “Wait, you have eczema too?! Omg have you tried x? And did you hear about the meet-up to visit the new eczema clothing company? Free samples! Oh and have you joined the eczema walking and group? Heard about the fair? Tried the eczema yoga morning classes?” And then someone else overhears your conversation and they chip in, and then another, and then before you know it you’ve made all these new connections and been inspired by all these new ideas on how to augment your own care and all it took was not worrying about hiding your flared-up neck, and being willing to chat. On a side note, apparently the NEA’s annual Eczema Expo is a lot like that dialogue interaction (I hope I can go this year!!).

My point is you have to be brave and take a chance. If nothing else comes of it, at least you are increasing awareness, and that alone helps trickle into better attention by the powers that be, which can lead to policies changes, shape doctors’ standard protocols, cause businesses to make new product lines, etc. Plus you spoke up and expressed yourself, which is huge. It is so important to not feel like you have to hide the part of you that is as impactful and long acting as eczema.

I’m totally with the #unhideeczema movement because it can be so damaging to have to modify everyday life habits to take care of your skin that the last thing you want to do is hide away, not to help heal, but because you feel ashamed. There is no reason to be ashamed. Over 31 million people in the U.S. alone have eczema. You are not alone.

And so that is why I think it’s so important to take these chances, speak up, show some skin! Because this is your life, and yeah you may be living with eczema, but don’t let that stop you from living!

And here’s a recent picture of me living it up with Fi in our comfy autumnal pajama apparel.

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One last thing, if you don’t know where to start telling your story, get some ideas from the National Eczema Association. The organization goes into more detail about the mental benefits of writing your story in a recent post here.

my travel wishlist

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As the movement of creating more open dialogue around living with eczema grows, more and more events and opportunities are flourishing to help spread the word too.

My top 5 choices of places/events/conferences/camps/programs I would want to attend include:

  • Eczema Expo: Created by the National Eczema Association, this event brings together patients, caregivers, medical professionals, and product makers all to talk and connect over eczema. They even give you an idea of what the trip is like here. It just seems like a Renaissance Faire for sufferers of eczema and I’d love to go next year (hopefully it’s in Maryland or Massachusetts one year though!).

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  • Camp Wonder: This is an amazing program run by the Children’s Skin Disease Foundation that allows children to experience camp despite their skin conditions. I would love to be a counselor one day!

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  • Avène Hydrotherapy Center: First of all, this center is in the south of France, which is a beautiful land I long to re-visit. The spring supposedly was discovered to have healing properties when a Marquis’ horse was cured of pruritus after a few swims.  In time a hydrotherapy center and dermatological lab were built there, and so far, the testimonials of people getting treated there are beyond promising. Plus, like I said before, south of France. Be still my heart. Note: Avène also has US product lines now.

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  • Hannan-Chuo Hospital – A hospital in Japan thats dermatology department is run by Dr. Sato, who does a lot of research and treating of topical steroid withdrawal. You check in as a patient for a few months, and come out cured apparently. Unfortunately his blog is only in Japanese, but I’ll link it here for you multilingual individuals).
  • The Dead Sea – I hear its mud/water has some amazing healing properties due to its salts. It seems like many companies have turned the mud/water into packable salts for medicinal cosmetic lines, for example making bath soaks and other products, but I would love to be able to go there one day and just roll around for myself in the sea.

Other random events and classes that would pique my interest if I came across them and make me want to up and travel would be:

  • yoga retreats for skin sufferers
  • skin herbal remedy classes
  • book chats by writers with eczema
  • eczema in the arts conventions (I’m thinking like a comic con for skin!)
  • eczema spas (which I liken to Korean spas in my head)