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

collectives, cards, and community

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.

 

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).

career, eczema, my journey, NEA, travel/traveling

having a career with eczema

architect composition data demonstration
Photo by energepic.com on Pexels.com

Last week in my email I saw a post from NEA about a woman named Helen Piña who described what it’s like for her to have eczema with her job. I was intrigued, as eczema has completely derailed my initial career plans, and because Helen is the first person I relate to whose eczema flares got crazy in the early 20s. I can definitely relate to her about causing little clouds of skin snow to rain down when leaving a spot (ugh), as well as trying to figure out when to scratch but also staying mindful to not end up doing it randomly while working. My catch was that I worked as a physical therapy aide and so I had to do be in close quarters with patients, leading them through exercises and demonstrating activities, so I really didn’t feel comfortable having so many skin issues around them. Physical therapy school was even more difficult in that regard because then I did have to physically manipulate patients (can you imagine trying to stretch someone’s hamstring and them seeing little skin flakes falling off of you?). Personally, I always felt incredibly self conscious about it as it also seems like a health risk. Needless to say, it did factor into my decision to leave that field. That being said, I find it extremely encouraging to hear about how people make it work, keep their careers, and find an new normalcy in their day-to-day.

Nowadays I have been inspired to find other lines of work to that fit my skin too. But more on that another day.

Speaking of day-to-day life. I signed up a while back to be on the mailing list for the National Eczema Association’s Ambassador program, which means that when the opportunity arises, I am wiling to go meet with various people involved in making policies around eczema to voice my own experiences in hopes of shaping the policies directly around patient input (if you’re interested, here’s the link to the NEA ambassador page). A few days ago an email came through asking for ambassadors who were interested in going to Chicago (with a stipend, food and lodging covered, and travel expenses covered up to a certain amount). I think it’s amazing that the NEA is acting so efficiently as a liaison between the people experiencing eczema and then people and organizations who are doing the research and making the policies that will affect the people with eczema.  After all, when are you offered a chance to have basically an all-expense-paid trip to go and try and change the policies that impact your day to day life?

 

eczema, NEA, skin care, topical steroid withdrawal, travel/traveling

my eczema 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
  • eczema rehabs

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 in media/arts

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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 mediums. As I come across more, 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.:

  • Daniel Boey (the Godfather of Singapore fashion)
  • Karen Fisher (of Eczema Life)
  • Michelle (of Sunstone Kimonos)
  • Jennifer (of The Eczema Company)
  • Abby Lai (of Prime Physique Nutrition)
  • Cara Ward
  • Bronya (a makeup artist who does amazing and color eye and face makeup despite her facial eczema)
  • (NEW) Briana Banos (Preventable: Protecting Our Largest Organ documentary creator)

 

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.

 

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).