My Skin Talks To Me: My Experience Living With Eczema for 40 Years

NEA board member Lisa Choy reminds us to listen

Looking back at my 40-plus years of living with eczema, I have learned that my attitude toward my eczema has profoundly affected how my eczema responded to treatment. It explains, at least in part, why my eczema has progressed and often gotten worse over time, and also why it has got better.

What I know now is that my skin talks to me. My skin actually speaks to me. It sometimes yells at me with a whole-body flare. It sometimes whispers with a tingling itch.

I wasn’t listening

For a very long time, I wasn’t listening to my skin. I ignored it. I didn’t give it the attention it needed—and eventually, my skin rebelled.

I knew I had something called eczema that made my skin itch and develop rashes, but I didn’t take it seriously. No one seemed to take it seriously; most doctors just brushed it off with a prescription for some cortisone cream.

I treated eczema as a little inconvenience that I had to live with. In fact, I treated my eczema like a headache. When you have a headache, you take a pill and the headache is often gone in a few hours.

I thought my eczema could be treated the same way: dab on some cortisone cream and it should be gone in a few hours. But it wasn’t.

So, my skin started yelling at me. It started with a slightly raised voice. It just squawked a bit at the usual places, like the insides of my arms and the backs of my knees, when I was a preteen and teenager. Then it shouted from my chest and torso when I was in my 20s. It began to yell behind my ears, around my neck, in my underarms, on my ankles in my 30s. And in its last attempt to get my attention, it yelled all over my face (which was hard to ignore every time I looked in the mirror) and all over my body in my 40s.

Stop scratching

“Stop scratching.” haven’t you heard that a zillion times? It’s so frustrating when people say, “Just stop scratching.” we would love to stop scratching! And we know that if we could stop scratching, our skin would look a lot better. But it’s not that easy.

It’s hard for people who don’t have eczema to understand why we scratch so much. My husband has oily skin, exactly the opposite of my dry and sensitive skin. He loves to have chlorinated pool water dry on his skin so it dries out his skin. Just the thought of that makes my skin itch! He has often told me to stop scratching, but that is easier said than done, especially at night. In the middle of the night, he would grab my hand and try to stop my scratching. My husband finally understood one day when he got a good dose of poison oak. He couldn’t stop scratching. I said to him, “stop scratching!” and he finally got it!

Eliminating triggers and irritants

In my 30s, after 20 years of topical steroids and an occasional injection, I realized my eczema was more than an inconvenient headache. I decided instead that it was an inconvenient allergy. I noticed that I would get red itchy bumps on my hands whenever I peeled shrimp or petted or washed the dog. So I decided I should try to eliminate possible irritants or triggers for my eczema.

First I got rid of all the scented creams and soaps. Anything that had a smell to it had to go, including dryer sheets, nail polish, and some cleaning products. I thought that if I could smell a product, it had to be bad for me.

Seeking relief

After my perfume purge, about eight years back, I had an extremely bad bout of eczema that lasted three or more years. Nothing was working—well, not the traditional things like corticosteroid ointments and creams, or my 60 mg kenalog shot. I was miserable, stressed out, working full time, traveling overseas, and raising two young kids with my husband, Kirby.

I had some very bad days when I didn’t want anyone to see me. I truly felt sick. I could feel the eczema raging inside of me; it was angry and it made me feel tired and drained. My body was battling something, and my skin was the battlefield.

My treatment list

I tried all the typical topical corticosteroids. By the way, the National eczema association has this fabulous brochure that lists all the topical steroids from the most potent to the least potent. It’s handy and important for you to understand when you’re using the really potent stuff versus the least potent stuff. Then I moved on to the nonsteroidals. I know now that when I tried them, I wasn’t using them properly.

I decided to do the skin allergy testing after my dermatologist told me she couldn’t do any more for me. Oddly enough, shrimp and crab didn’t come up. Dust mites and grasses, I knew about those. But tomatoes, stringbeans and corn? Why? And you know what? Today I can eat tomatoes, stringbeans and corn. I think I was just in such a bad state at the time that these things came up in the allergy testing. I was eating a lot of tomatoes because I had some heirloom tomato plants growing, so maybe that was it. I did do the diet restriction thing and I didn’t eat tomatoes, beans and corn for a year, and now I’m fine.

Then I tried just about everything else! I tried acupuncture and herbal medicines. I tried every form of herbal meds — pills, powder, tinctures. I even cooked my own raw herbs. If you ever do that yourself, make sure nobody’s at home because it smells like you’re cooking roots and bark (and guess what: it tastes like roots and bark!). Meditation is a good one. I tried phototherapy, too. I decided to give everything a try because I wanted to find my cure.

Finding NEA

Along the way, as part of my search, I tried massage therapy. I went to a massage therapist who has a way of massaging through your clothing so that you don’t have to disrobe (and you don’t have unknown lotions and oils put on you). He noticed that I had a little eczema on my hand and asked if I had heard of the National Eczema Association. He showed me a copy of NEA’s newsletter. I read it through, and it was fantastic! There were people out there experiencing the same things I was, talking about their own eczema struggles in The Advocate’s “Scratch Pad” section.

I made a donation to NEA so that I could get their materials, and I received a very nice thank-you letter with a personal note from the CEO. She invited me to visit the NEA office, which is only eight miles away from my home. A year later, I finally visited NEA and became an active volunteer, and I am now a member of the NEA board of directors.

NEA helped me realize that I have a real disease—a disease that needs real and consistent treatment, not just a casual dab of ointment. At my first NEA patient conference, I learned how to effectively use the steroidal as well as the nonsteroidal creams like Protopic and Elidel.

My skin talks to me: four things that help

Here are four things I’ve learned that help me manage eczema.

1. Listen to your skin

The minute I get an itch, I react by taking care of that itch. Sample sizes (moisturizers or prescription creams/ointments) are great; I recommend carrying them with you at all times in your pocket, purse, or briefcase. The topical steroids are now working for me again because I’m finally using them properly.

2. Start over

Sometimes when I get an itch and I put my meds or my creams over it, it still itches. I think I may be sealing in an irritant, so then it’s time to start over:

• Wash/cleanse the area to remove all other moisturizers/creams, pollen, perfumes (to avoid contact dermatitis), dead skin, etc.
• Soothe the skin with cool water.
• Pat dry.
• Apply medicine and moisturizer.

On occasion, the medicine and moisturizer burn, perhaps due to broken skin. My kids who have mild eczema sometimes complain after applying meds and creams to an itch because they burn. Start over! Rinse off, do a light pat dry, and then what I’ve found that really works for me and my kids in this instance is to use an ointment type of moisturizer, like Aquaphor. I find that the irritated skin needs time to calm and heal a bit. Later in the day or the next day after bathing, apply the medicine and moisturizer.

My daughter, who had a mild case of eczema, went on a lake trip for two nights when she was in 5th grade. She was in and out of the lake water, got a lot of sun, and was scratching at night. She probably didn’t take care of her skin because she was too busy having fun. She called us to pick her up and said her skin was bad. She wanted to go home and shower and have me help her take care of her skin. She was practically in tears. My husband couldn’t understand why we had to rush home when he really wanted to run an errand after picking her up. Why can’t she wait to take a shower, it’s only going to take an extra 30 minutes? My daughter reminded me of this incident last month when we were talking about my speech. She said, “Dad really didn’t get it. You did.” So, we got her home immediately, and started over, first by showering her off.

3. Take care of your skin everyday

I am proactive, and all of my preventive measures really do help. I apply my creams twice a day after bathing. It’s a habit, like brushing your teeth. You brush your teeth in the morning and then you brush your teeth at bedtime. Make it a routine so it becomes a habit, a good habit, and your skin will thank you for it.

Remember that a lot is not necessarily better. An even layer of moisturizer is ideal and comforting. Too much cream makes my skin itch; it makes me feel like my skin can’t breathe.

4. Treat your skin like a baby

I’ve found that caring for my skin is like caring for a baby: feed, burp, check and change diaper, fuss, nap, then re- peat. I’ve found it’s best to think of my skin care as similar to caring for a baby: nurture it, look out for it (avoid per- fumes, fragrances, and harsh chemicals), clean it, feed it (with moisturizer), listen to it (when it itches), then repeat. If I ignore my skin, like a baby it will scream at me.

More whispering, less yelling

I think my skin stopped yelling at me because I am no longer ignoring it. I am listening to it, and I’m babying it.

My daily routine is keeping my skin happy and quiet. The silence is a good thing because I think it’s my skin’s way of saying thank you—“thank you for taking care of me, thank you for listening to me.”