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”.

here’s the skin-y

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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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