all posts, miscellaneous

thankful for eczema?

art birds business card
Photo by Pixabay on Pexels.com

Happy late Thanksgiving!! Though I thought about doing a post earlier in the day, I preferred to spend the time loafing around with some of my loved ones, so instead you’ll have to contend with me rambling on about what I’m thankful for during these last few minutes of the day.

First off, what I am most thankful for is my family and friends (who are essentially non-blood family). I love their colorful personalities and wouldn’t turn back the clock and try to change any moment in my life if it was at the risk of not having all my people here in my life. Now with that clarified, it’s onto explaining the title of the post.

Though it is currently driving me to take a daily bleach baths and use antihistamines, in some ways I do find myself thankful for having had to experience eczema. That statement alone may seem crazy given how much my skin drives me nuts, but not as mich when I de-focus my minute experiences and look deeper as to where my eczema journey as a whole is leading me.

Because in actuality what it has led to is me here in this moment thinking long-term about:

  • what plan of action to take next with my skin (when I’m done breastfeeding Fi)
  • if Jake and I will want another biological baby one day (a thought we ponder given that many newer treatments that target genes and whatnot have not been tested for long term effects), and
  • on all manner of futuristic positivity (like “this flare will pass”, “I can use this time to really focus on writing and on building up my women’s health knowledge for future career directions”).

I continue to find myself thirsty for knowledge, and subsequently scouring the world for new research studies done, as well as comparing and contrasting the results to better inform myself about options available, which I then use to create a skin plan (post on that coming soon).

But what in particular am I thankful for that eczema has “given” me? Primarily four things:

  1. Perspective. I have not only learned to be more aware when all systems are go and my skin is more functional, but also that I can understand the limits of various aspects of medicine, understand the desire of people to offer their suggestions for alleviation, and understand that I may never know my specific causes or triggers but I have to learn to deal regardless.
  2. Resilience. This has developed from having to fight for new normalcy without seeing the finish line of my efforts, as well as from having to learn to deal with visibly not looking normal but not always being able to hide away until I feel better.
  3. Flexibility (of mind). I have been forced to change my approaches and my attitude around living with a disease that is still being researched and has no known cause, and
  4. Bravery. I’ve been provoked to be seek out ways to help spread my experience and open up about my life via a medium I always wanted to pursue but was too afraid to previously.

This has been a challenging and weird journey, and continues to be so, but I am getting through as best as I can and finding new side quests along the way that almost make it feel worth it. Speaking of side quests, that reminds me of this meme:

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What about eczema or your own battles are you thankful for today (or any day)?

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all posts, community, eczema

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 Skinย 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. ย 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 theย National Eczema Association. The organization goes into more detail about the mental benefits of writing your story in a recent post here.