I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂
I’ve been reflecting on the various triggers to my eczema during this neverending but constantly changing topical steroid withdrawal and at 2am this morning I came to a realization. My skin tends to itch like crazy when I’m exposed to something wet in short bursts. This includes actions like washing my hands, dipping my feet in a tub to test the temperature, applying lotions to dry skin, etc.
This realization made me backtrack and first want to know what is the stimuli the body responds to when it’s wetted. We have receptors for temperature (thermoreceptors) and chemicals (chemoreceptors), and even some for painful exposure broadly (nociceptors). We also have cutaneous receptors that can detect pressure, touch, stretch, and vibrations, but still none of those seemed intuitive for how wetness would be recognized. Obviously it’s got a temperature component but that wouldn’t work alone. I did a quick google search and came across this article, which explained that wetness is registered a mix of cold temperature, pressure, and texture reception in tandem with learned experiences to create what was called “perceptual illusion”. Note, I have cited a secondary source above, not the primary study. The study itself I couldn’t access fully, but it is here.
I thought about the information I read and concluded that it didn’t help to explain why my eczema-afflicted skin reacts so aggressively to short duration bursts of wetness. Perhaps it has something to do with the over-sensitization nature of eczema. Maybe if the A-nerve afferents are just more reactive in general, inconsistent exposure (like multiple drops of water hitting my skin) would cause the A-nerve afferents to send tactile/temperature information repeatedly. Then as the over-sensitization makes me register many sensations as an itch, it would just create more itching. Maybe?
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”.
One aspect that sucks about eczema is how detrimental it can be for finding love. A large part of our society, for better or worse, may notice visual aspects of a person such as our skin first, and having rashes and redness that many people perceive to be contagious doesn’t help much when you’re on the market. Also, even if people aren’t noticing our skin, we may think they are and be more self conscious or less confident because of our own insecurities and perceptions.
Though it can see hopeless at times, there are many people out there who do suffer from eczema (or other visible skin conditions) that find love and prove that most people do see more than skin-deep.
The National Eczema Association had a post a while back that featured a few individuals sharing their stories about their experience with having eczema and dating, marriage, and intimacy, and how they manage to live happily ever after. The post also mentioned the character traits that the interviewees found most desirable in their partners: “openness, honesty, and authenticity”.
My own experience with eczema and romance has been fairly tame. I didn’t date until I was about 20, and when I first had the global skin flare my junior year of college I just retreated into my room for the most part and focused on how to deal with school rather than focusing on romance. I think at the time I was stressed enough by school in general that dating wasn’t really on my mind, and if it was I assumed my weird personality would be more of a deterrent than my skin. Though, when I was on oral steroids and antibiotics I remember going out a lot more and being a lot more flirty in general because my skin felt better. I think personally I just shifted wildly between hiding when I was flaring badly, to going out and being extremely social when my skin was under control. My skin was a bit bad after I graduated when I was working as a physical therapy aide back in Maryland, but I think I combatted that era of life by eating better and being freakishly active. I went out dancing a lot, but also ran every day and enjoyed hours in the sun. I also generally have an easier time with the visible skin issues in the warmer months, so even though I still slept poorly, I felt more comfortable in public with my skin because I knew it wasn’t as noticeable to others. When I started dating Jake, I remember the first night I stayed over his place I asked him why he kept his socks on all the time (even when the apartment was heated), and he said he had bad eczema that looked really gross. I told him I had eczema too and that he shouldn’t have to hide his feet and made him take off his socks. When my flares inevitably came back and plagued my entire body I did have moments where I felt really insecure I’d flood him with a whole host of questions. Do you want to be with me if I never heal? If I’m always flaky? If I’m always stressed by my skin? If I never want to go out anywhere? If some days I can’t cuddle with you? I’d ask him: why do want to be with someone who’s face was also dry, swollen and puffy? I am not pretty- I don’t even have skin! He always answered that I was beautiful and that my skin wasn’t want made me beautiful, and that yes, he wanted to be with me even if I never healed, we’d just learn to cuddle with sheets between us, and that he believed I would heal and it would just take a while and there would be good days and bad. Eventually I stopped having the insecurities around my skin and our relationship, and generally I don’t worry about that even if my flares are bad, which I think has helped us get much better at handling them. So in my experience, it just takes finding the right person, and eczema doesn’t impact that.
In regards to the experience of others, Abby Lai (of Prime Physique Nutrition) had a post and video a while back about dating when you have eczema that covered a lot of her own personal experience as well as advice to both the person with eczema as well as the partner.
Funny and incredibly genuine. A very caring and intelligent person. Also, hot.
Could you see that I had a visible skin condition? If so, what were your opinions on it?
No but I became aware of your skin history early on.
Did do you know what eczema was?
Yes, I have it.
Do you understand more about eczema now since we’ve been together?
Yes absolutely. We even do research together now.
Has my eczema ever affected me more than physically?
Yes, it is a stressful disorder that has at various times lead to compulsions, fear, chronic sadness, and stress.
What are your opinions on eczema and mental health?
The former can lead to problems with the latter.
Has my eczema ever come in-between our relationship?
Not exactly, though at times it has made some common/everyday things difficult, like prolonged physical contact, temperature control, going out and socializing, and eating.
How does my skin affect you?
It worries me when you aren’t feeling well. I internalize your stress and just want you to feel better. It hurts me to see you in pain.
Have you ever had a bad experience with my skin? If so, what was that and how did you help resolve it?
Yes. During dry out periods the flaking can be extreme and requires diligent house/car cleaning routines. During really bad flares, we need to almost entirely avoid physical contact. Hoodies and blankets help with that!
When I have a bad flare up eczema how does that affect me from your point of view?
It stresses you out and is deeply frustrating to you. It restricts common activity, and makes you worry about causality, especially dietary causes.
Do you think there is enough help out their for sufferers with a skin condition? If not, how do you think this can be changed?
No, there isn’t. The biggest thing that needs to change right now is overprescription of corticosteroids. Doctors almost universally address symptoms and not causes of this disorder. There needs to be an increase in education on the relationship between lifestyle and systemic inflammation. Such a relationship is known to exist and doctors should address the root causes of inflammation long before risking potentially permanent damage via misuse and overuse of prescriptions.
What would your advice be to others who are in a relationship with someone who has eczema (or any other condition)?
It’s important to keep in mind that this is a manageable condition and to be incredibly observant of any behaviors and habits that correlate to flares.
So there’s a taste of what it can feel like for the person on the other side of the eczema curtain.
I’ll leave you with the immortal ever-applicable words of India Arie, “I am not my hair, I am not my skin, I am the voice that lives within”.
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.