community, eczema, media/arts, NEA, relationships

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.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

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alternative/holistic medicine, eczema, media/arts, travel/traveling, women's health

girl power! on collectives and community (and witches!)

photo of multicolored abstract painting
Photo by Free Creative Stuff on Pexels.com

Eczema is a devilish disease that is best thwarted mentally (in my case) by keeping myself busy reading, researching, and daydreaming. The strongest distraction as of late has been collectives. I have always had an affinity for all sorts of collectives because I think that when the project comes together from all that cooperation, it showcases the greatness of an amalgam of multiple minds. As such I have become more aware of collective collaborations over the years, especially when it comes to the arts. As I am often entangled in women’s health, below are a few of the more recent finds that are all women/all girl collective efforts.

The Secret Love of Geek Girls is an anthology created by Hope Nicholson and other artists, of prose and comic forms, which encompasses various topics such as divorce, coming out, asexuality, young love, and other aspects all from the lenses of women who identify and/or embody the idea of a geek. I absolutely loved it. It’s an anthology I have purchased to randomly flip open pages to read when I’m feeling a certain kind of way. Also I think it would be an awesome idea to create an eczema anthology one day, to share the experiences and feelings and worlds of those afflicted.

Girls Drawin’ Girls Tarot Deck  is a beautiful tarot deck done by the Girls Drawin’ Girls, a group formed by Melody Simpsons (who worked on the Simpsons). The group was formed to allow women a space to compete in a traditionally male-dominated industry. Speaking of tarot, I’ve gotten very interested in it lately. Not only does it gave a strong history of feminine mysticism but some people in the medical and health professional fields have been starting to use it as a therapeutic device. Jessica Dore uses tarot in her clinical work as she becomes a social worker, and Dr. Art Rosengarten, a clinical therapist, uses tarot for psychotherapy. There are a few older studies (like this one from the 90s) about tarot used for therapy, and the general impression I got is that due to the symbolism, tarot helps to give the clients a more visual way to process out their thoughts and bring forth aspects that are on their subconscious. In my head, if nothing else I see it as being a therapeutic tool, much like the Rorschach (ink blot) test but more multifaceted, and I would love to see more studies done on it. I personally want to learn how to do tarot readings for the storytelling aspect, but if it makes me subsequently be more in the moment, reflexive, or mindful (or if nothing else, distracted from my itches), I’m not complaining.

And since we’ve delved into tarot, and are thus already over the line and into mysticism, we must then talk about witches. The history of witches in America (as I understand it to be from listening to the tours in Salem and from this Smithsonian article), is mostly a tale of fear mongering. It started in Salem, Massachusetts (at the time the town of Danvers was also a part of Salem). A young girl and her cousin (Elizabeth and Abigail), whose slave (Tituba) used to tell them stories to amuse her and her friends, supposedly faked going into a possessed fits, their friends followed, and then religious men got involved who started calling out all witches to be persecuted (usually with the sentence of being jailed forever). A witch ended up encompassing any wayward woman (or sometimes man), such as one who didn’t behave as expected, who was promiscuous, who spoke her mind with the candor of a man,  who dabbled in the art of herbal healing, etc, and evidence for arrest included visions for a time. The tension was ramped up because of various families in towns competing for resources and believing the high tensions to be the result of devilry (witches were thought to commune with the devil). I’ve heard it thought that there may have also been competition for tourism and so slandering the other parts of Salem (e.g. Salem Village versus Salem Town) with the threat of witchcraft was a surefire way to insure more money into your own town (but I’m not sure this is true- I just heard it by word of mouth). The culmination of events led to the infamous Salem Witch Trials, with 200 accused, and the death of 20 people (not including those who died in jail).

Today there is more of a new era of witch culture in America. Well there are two blurred and overlapping lines of “witches”. There are the herbalists and healers who had had a bad rap in the past for practicing medicine and healing outside of the realm of religion/formal hospital training, and then there are the new age witches (which can also include herbalists and healers). As I live very close to Salem today and Vermont/Maine, I do get glimpses of both, but only limitedly. A lot of Salem is rampant tourism like the Harry Potter store Wynott’s Wands (though their wares are beautiful and I found out that their wands sell well as batons for conductors, which is really cool).

One example of the new age of witches is HausWitch, the store creation of Erica Feldmann who describes it as “a modern metaphysical lifestyle brand and shop” where they sell “witchy” wares made by independent makers, including a lot of self care body products, journals, courses (like tarot readings and seasonally-focused events), etc. The most interesting aspect of HausWitch and stores like it are the modernization of witchcraft as an inclusive movement. HausWitch for example, works to create community and thus holds many different events and healing practices and activism discussion among other activities to foster connections. Traditionally, a bunch of witches together in a group was called a coven, and was seen and portrayed as a dangerously bad thing, but in seeing covens today, they are essentially just another form of community with the commonality, instead of being location, sparking the starting connection.

Personally, as a person who is always trying to find ways to foster community wherever I go, I think the whole new resurgence of witchcraft is pretty cool, and I’m excited to learn more about it and see where else in the country it’s happening. I am particularly biased because I have always loved herbalism and since my eczema has gotten crazy, self care, and so any movements that entails taking care of yourself and immersing yourself in a community that is seasonally-inclined, is my cup of tea.

 

REFERENCES

Blumberg, Jess. “A Brief History of the Salem Witch Trials: One town’s strange journey from paranoia to pardon.” Smithsonian.com, https://www.smithsonianmag.com/history/a-brief-history-of-the-salem-witch-trials-175162489/. Accessed 17 Sept 2018.

Dore, Jessica. “Tarot + Psychology: An Interview with Dr. Art Rosengarten.” Jessica Dore, https://www.jessicadore.com/tarot-psychology-interview-dr-art-rosengarten/. Accessed 17 Sept 2018.

Heaney, Katie. “Does Your Therapy Need More Tarot?” The Cut, https://www.thecut.com/2018/07/does-your-therapy-need-more-tarot.html. Accessed 17 Sept 2018.

Semetsky, Inna. Integrating Tarot readings into counselling and psychology. Spirtuality and Health International. 2005;6(2).

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

books, eczema, media/arts, topical steroid withdrawal, topical steroids, travel/traveling

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:

 

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:

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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. 🙂

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

eczema, media/arts, my journey

here’s the skin-y

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Photo by Dom J on Pexels.com

Who am I: I’m a woman with eczema. I love reading, gardening (mostly indoors lately, as I live up north), writing, playing music (though I am a bit out of practice for both viola and piano), daydreaming, sunshine and warm weather, exploring areas by foot, watching horror movies with my husband and constantly talking through them, engaging in random bursts of physical activity, being ridiculous, and spending time with family and friends, and of course, storytelling.

My eczema history: I’m one of the people who was born with eczema where it initially only bothered me on the crooks of my elbows and knees, but as I grew up it progressed. Winter 2012 I had my worst flare and a Staphylococcus aureus infection (as discovered by a fluid sample from a lymph node in my neck). I believe that was the first time I went on both oral steroids and antibiotics. Since then I have had intermittent periods of flares of varying lengths of time and degrees of severity. I have been suffering from multiple occurrences of topical steroid withdrawal periods (the longest being out 13 months) and had tried various dietary modifications (avoiding gluten, avoiding legumes, avoiding dairy, eliminating added sugars). Currently I am only doing one dietary change- reducing added sugars. Throughout my eczema journey, I’ve underwent many of the traditional routes to managing the flares, corticosteroid creams/ointments, oatmeal/bleach/epsom/essential oil baths, vaseline/eucerin lotioning, repetitive lotioning, phototherapy, antibiotics, prednisone, gluten-free/dairy-free/sugar-free/legume-free diets, seeing a naturopath, taking supplements/herbal medicines, the list goes on and on. Though I’m sure some of those solutions work for others to help manage their skin issues, the long-term result is that I still have flares and that I need to learn to control said flares in new ways, because unfortunately there really are no individual guidelines when it comes to eczema. As I was briefly a graduate student in a physical therapy doctorate program, I have been using what I learned to try to apply the concepts to my own life in regards to eczema management. I have been wondering about a few other alternatives to do to help my skin during a flare, inspired by things I’ve learned while still in PT school, and I’ll post about them over time.

Other related health stuff: I have allergies, some I was born with (food ones) and some that I developed over time (animal). The foods I am allergic to are peanuts, pistachios, and cashews; environmental factors are mold, dust, grass; animals are cats, rabbits, some types of dogs. I also have a history of asthma, though I’ve been fortunate enough to have mostly outgrown it, and haven’t had to use an inhaler since I was 8.

Impact of eczema on my life: How has eczema has affected my life? I am a person that has eczema over my entire body (at least since 2012). It changes which areas are the worst, but in general, all my skin gets impacted when I flare. This has altered my exercise habits (sweating during a flare can be intolerable), how I can sit/relax (certain materials or positions cause my skin to heat up and rash more), whether or not I can sleep through the night (my skin heats up at night and my core temperature drops so I end up feeling cold while my skin feels hot, damp, and rashy ), and what my daily life habits are (I tend to itch worse when waking up, after a shower, after applying lotion, when sitting for a while, in cold rooms). The largest change I took was deciding to leave my physical therapy doctorate in 2017 program because I wasn’t sleeping, couldn’t handle manual manipulations due to necessary skin contact at times, and because I was more prone to infection from contact with healthy skinned-people who carry Staph.

What I am doing now: I have since switched into a Masters of Health Studies and am building my program as I go along. Professionally, I’ve started thinking about how to build my own company of providing information assistance to health-related businesses, nonprofits, etc. Currently, I am an intern with Eradicate Childhood Obesity Foundation, where I do anything from grant writing, to outreach, to basic website design, blog writing and editing.

Dreams: One day I think I’d like to start my own nonprofit related to addressing health disparities in communities and increasing health literacy. I’ve also had a long term dream of becoming a librarian (but more so a feral librarian, meaning a librarian that isn’t formerly schooled in a librarian sciences education) to use the opportunity to expand what people think libraries do to showcase the real potential for community outreach and modern change that libraries can hold. Bridging the two dreams, maybe I could create a nonprofit health library that offered services such as the ability to “check-out” doctors and health providers for general consultations/patron questions, as well as rental spaces and exercise equipments to host fitness and activity classes, and education seminars on various important health topics and new research.

Weird unrelated hobbies: I enjoy setting up for parties by lightly theming a room, and then leaving it like that indefinitely. Some favorite inspirations for decorating are Harry Potter and Alice in Wonderland.

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