The National Center for Biotechnology Information did a study in 2007 and estimated that 31.6 million people in the United States (and an estimated one third of the entire world population) experiences some kind of eczema. It’s easy to see how the number could be even greater, because almost every time I try to explain to people what is going on with my hands, some form of the following conversation happens:
Me: “I developed severe eczema after my son was born. It’s incredibly painful and affects every aspect of my life.”
Well intentioned person: “Oh, I had eczema too when I was a teenager. It was so awful. I used to get itchy hands and sometimes my fingers would get cracks in them.”
Me: “This goes way beyond that…”
Well intentioned person: “Have you tried using <<fill in the blank with some kind of over the counter eczema product that is loaded with perfume and packaging>>.”
Me: “That just makes it worse.”
Well intentioned person: “Maybe you should stop eating gluten.”
Me: “This is genetic, not gluten.”
Well intentioned person: “Bread is poison, you know.”
As you can see, there is no way for me to carry on this conversation without coming off as a total asshole.
Diagnosis and finding a treatment plan that was effective and proactive (but not too aggressive ) was a long and sometimes discouraging journey. After going through three frustrating experiences with “regular” dermatologists I eventually created a checklist of signs that a so-called dermatologist was not going to be able to help me – The Lobby Checklist.
The Lobby Checklist:
– Is the lobby recently remodeled?
– Is there a glass case containing product samples that the dermatologist will later attempt to convince you that you need?
– Are there more info pamphlets about laser hair removal than about legitimate skin conditions?
– Are the receptionists exceptionally young and attractive?
If I could answer yes to three of those questions then I knew I would encounter some kind of “doctor” whose eyes would glaze over when I described my symptoms and then prescribe a useless cream even after I already told him/her that I had already tried it. I eventually sought out an allergist for a complete allergy workup. My allergy tests showed no serious reactions, but the doctor was sympathetic and sent me home with 7 different steroid creams and 3 pages of notes. Time dragged on. Eventually my hands and I settled into a mutually hostile routine – I would wash dishes in gloves, my hands would turn bright red, throb and itch, I would apply cream that didn’t alleviate my symptoms but I applied it anyways because I didn’t know what else to do.
Eventually I started getting really sick. It began with a sore throat, then I lost my voice for several weeks, then dry coughing and swollen lymph nodes. Every two or three days I would develop a new cold sore on my mouth. Cuts on my hands wouldn’t heal. My fibromyalgia went crazy. I started sleeping all of the time, and on weekends I only got out of bed to eat a meal or two but otherwise slept whole days away. I made an appointment to see a woman at the University of Washington who specializes in eczema. She asked a lot of questions about my social life: do I ever get breaks from the baby? Does anyone help me wash the dishes? Do I have any hobbies? I started crying so hard that I couldn’t even spit out a simple answer.
Although she was obviously disgusted with my lack of emotional maturity, she put me on a two-week course of antibiotics and heavy rounds of Clobetesol, a potent topical steroid. In addition I had to soak my hands in bleach and water several times a week, take 2000 IU of vitamin D, take a daily Zyrtec plus a dose of Hydroxyzine for times when I really couldn’t control my flare ups. I had to buy thin cotton gloves to wear underneath my latex-free regular gloves when doing dishes, and also at night. She also told me to see a therapist and start having some fun.
Three weeks later I don’t even recognize my skin. It looks pre-pregnancy clear. Eczema sufferers are known to have more Staph. aureus on their skin and are frequently infected when the skin is broken from scratching or cracking. I had a raging staph infection that had been going on for months. Once the staph infection was under control my energy returned and my body could heal itself again. Although I still have troublesome days and a few patches of rough skin, for now at least I don’t have to live in fear of any situation that involves washing my hands. I’m even able to apply a little makeup now and then and I no longer look like I’ve been on a bender for three days straight. Right now things are good.
Just as bad as all of the physical discomforts of the last 18-months were two realizations that I had: first, that this is genetic and will never completely leave me (my aunt developed severe eczema after her first child was born 23 years ago and it has never left), and second is that it wasn’t a dirty hospital that infected my son with staph and nearly killed him, it was probably me. For now I am trying not to dwell on those negative things and instead focus on the world that has reopened to me as an able-handed person: I can play the piano, sew, work in my garden and write in my blog again, although this time I will do those things without taking my body for granted. Skin, hands, and good health are never something anyone really thinks about until they are gone.