My Eczema History

1991: I had an itchy red rash on my hands. I was around 4 or 5 years old. My mom took me to the pediatrician. At the time, my dad had a huge water jug full of loose change. I (apparently) really liked playing with all of the coins, stacking them up, counting them, building with them. The doctor said I was probably sensitive to the metal coins and that's what caused the rash. My mom was given a prescription for a topical steroid to make the rash go away. The doctor said stop letting me play with coins.

1994: Around 7 or 8 years old, I started getting rashes on my inner arms, hands, and behind my knees.  We saw another pediatrician. He said I have eczema and gave me another prescription for topical steroids and for a giant container of Aquaphor. The Aquaphor was greasy and I didn't like it.

From this time on, I would have eczema rashes on my hands, arms, and all over my legs each fall and winter. Each time we saw a doctor, they attributed my eczema to bad genes because my paternal grandfather had psoriasis and my aunt has rosacea. I was told I would probably outgrow it.

I remember being very jealous of my cousins, who were my age and did not have any skin rashes. Not only was I chubby and had to wear glasses but I had a gross rash, too! A boy at school told me I had ringworm and that you got it from picking your nose. Since I wouldn't get AOL for a few more years yet, I hadn't been introduced to WebMD. So I just thought he was right and I felt even more ugly and embarrassed.

Because I didn't like the Aquaphor, we tried several other moisturizers but none of them helped with my eczema.

1999: When I was 13 or so, I started getting rashes during the summer too. My legs were very rashy. I remember wearing jeans at summer church camp and even though it was SWELTERING HOT, I would not wear shorts. I still got rashes during the fall and winter. My eczema rashes were very embarrassing to me. At church camp we had to stand in a circle and hold hands for prayer and I hated doing that (especially if I was next to a cute boy!) because my hands were so rashy and ugly.

2000: I started getting rashes on my earlobes. I thought it was just because of my earrings so I stopped wearing them but the rash never went away. I also started getting red skin on my eyelids. I saw a dermatologist who gave me a prescription for two topical steroids, one for my body and one for my face. The doc said I shouldn't use eye makeup. I asked when I would outgrow these rashes and the derm said he wasn't sure, usually after puberty. I was about 14.

Whenever I saw a doctor and they asked if there was anything else wrong, I told them about how I had a nasal drip. Obviously I did not call it that, being a kid and all, but they figured out what I was talking about. More than one told me to just "spit it out" and were never concerned about it.

Throughout high school, I would try many lotions to combat my super dry skin. Since I was also getting zits, I also tried to wear makeup but it almost always ended up flaking off. I used a Neutrogena facial mosturizer for a while. At some point during high school, I started using mineral makeup because I thought it would be better than the liquid Cover Girl foundation.

2002: I had dry skin on my scalp which flaked a lot and someone at school noticed and made fun of me. I was very embarrassed. I could not get rid of the eczema on my hands and since so much of the skin on my hands was affected, I used the topical steroid like a hand lotion lotion. Since I had been told to use it on the rashes until the rashes went away, I didn't think this was a problem. I saw the derm and was given a prescription shampoo for my scalp as well as a topical steroid gel that I could apply directly to the itchy spots on the scalp.

The doctor also told me that I should "hit the rash hard" and use the topical steroid on the rashes several times a day until the rash went away. He gave me a prescription for a stronger topical steroid. This one helped keep the rash away for a while and became the one I would continue using for the next 10 years - halobetasol propionate. I was also given Elidel for the rashes on my ears, eyes, lips and chin. I found that the Elidel burned my skin a lot. And it did not improve my eczema. Eventually I went back to the same doctor who gave me a prescription for a facial topical steroid which helped but the rashes and red skin still came back regularly. It got worse in cold weather but still happened in nice weather.

2004: I was out of "my medicine" (aka topical steroids) and the rashes were hitting me hard. I now realize this was my skin starting topical steroid withdrawal. Obviously I did not know that at the time and wondered why I was cursed with such terrible skin and felt I would never be pretty. I remember crying and begging my mom to take me to the doctor. We didn't have health insurance so it wasn't easy, but we got there and got another refill of topical steroids.

2005: I visited a doctor and asked if there was anything else I could do for my eczema since I was almost 18 and it had not improved. Plus my hands were always rashy. I was told that I would probably have it for life and that eczema was incurable. I was tired of applying steroids all the time asked if there wasn't a pill or shot, something else I could take that would at least get rid of it even if I had to keep taking the medicine forever. I was told there wasn't. She also told me I had psoriasis on my scalp

Today I now know that there ARE oral steroids and steroid injections used to treat eczema but I am very glad that doctor did not prescribe them for me since TSW would be even worse for me if she had.

2006: I went on a date and when he tried to hold my hand, I wouldn't let him because my hands were too ugly. My face was pretty much under control, but my earlobes still had rashes. My legs were better but my arms were worse.

2010: In college, I saw yet another derm who said I "probably" had allergies. I was sick of being told that with no tests so I told her to refer me to an allergist. She tried to discourage it by saying that there was only one allergist I could see under the college's insurance and he was often booked up months in advance. I said I wanted it anyway. She said I was probably allergic to lots of things and it would be impossible to keep my environment free of dust and dander. I said I want to see the allergist anyway, just to see.

I saw the allergist a few months later. He was an older man who talked really slow and seemed half-asleep. To be fair, I was his first appointment of the day at 7:30 am...but 7:30 am is hard for a college student, too!! He talked to me for a long time about my history of eczema and my family history. He also told me ALL ABOUT ECZEMA, as if I had never talked to another doctor before. Avoid hot showers, no perfume, had I tried topical steroids? We talked about my breathing and if I ever wheezed or had an asthma attack or had congestion. I told him that I had a constant nasal drip and he wasn't concerned about that. He pointed to my grandfather's psoriasis and my aunt's rosecea as evidence of my genetic inclination towards eczema.

Despite the fact that he wasn't giving me any new information, I was very happy to finally be able to see an allergist. I hoped really hard that he would find some allergen for me so then I could just avoid that thing and get my beautiful clear skin in return.

First we did a scratch test. He tested a lot of different things then told me to wait. After a while he came back and checked. I remember that I kept looking at my upper arm and willing something - anything! - to start reacting. Nothing reacted. He said that since nothing reacted, he was going to take out "the big guns" and try injecting the potential allergens in my other upper arm. Again, I waited and stared. A few of the injection sites looked a little pink and I tried to remember what those things were. But by the time he came back, none of them looked very irritated to me. When he back, he said I hadn't tested positively for anything. I had had a very very slight reaction to dust mites, though. For the next 10 minutes, he told me all about washing sheets in hot water and often and making sure to get a hypoallergenic pillow because even though I barely had any reaction, it couldn't hurt to try and avoid dust buildup. Then he spent 10 more minutes talking about how eczema is genetic and I'll never be cured and sometimes we just don't know why people have it.

My skin was very dry and rashy. I always had what seemed to be reactions on my face when I tried a new product. I had completely given up on my hands being normal at this point. I started noticing these flat circular bumps on my hands which I attributed to the topical steroids. I thought they were weakening my immune system and I was worried about thinning skin. I tried using less topical steroids but it was the only thing that worked. From 2009-2011 I tried a variety of products, vitamins, and diets that promised to help my eczema. None of them helped.

One good thing I got out of this time was the Oil Cleansing Method, which is just a fancy way of saying I wash my face with olive oil. I stopped getting acne and my face seemed less dry. I also tried applying straight vitamin E oil to my face to combat the dryness. That was too sticky and didn't last.

2011: I went back to see my original doctor around March that year. It was the one who had reluctantly sent me to the allergist and I needed a refill of TS. I was also sick and thought I had strep. Even though I still had topical steroids left, I wanted to be sure to get a refill because I was graduating that spring and knew I probably wouldn't have health insurance for a while. My college health insurance ran out after I graduated.

The doctor had a med student shadowing her and the med student took my history while the doctor was with another patient. She asked why I was here last time and I explained that I had a rash. I purposely did not say eczema because I wanted to know if anyone had any other ideas. Everyone always heard, "I've been told in the past I have eczema but..." then tuned out and wrote up another prescription for topical steroids. I knew topical steroids weren't working very well and I wondered if I really had eczema or if there was ANYTHING ELSE that I could try. The med student asked me if I still had the rash. I said YES. She got very concerned and when the doctor came in, she told the doctor about it. The doctor chuckled and said, "Oh of course it didn't, she has eczema. It will always come back! It's chronic and incurable."

The rashes were worse than ever so I quickly went through the rest of my topical steroids prescription then I was on to my last refill. I graduated June 2011 and I tried to ration the refill because I did not have health insurance anymore and did not know how long until I could see another doctor. I was using a small amount but it wasn't enough to keep the flares at bay.

My skin was never normal during this time. I continued doing the Oil Cleansing Method, but I also started using olive oil mixed with vitamin E as a bed time moisturizer  I started using Vaseline for my peeling, flaky lips then ended up applying it everywhere because I didn't know what else to do and nothing was working. I remember getting into a fight with the guy I was dating at that time about Vaseline because he was mad that I used it. He thought it was gross and I should use something nice and less greasy. His mom used Aveeno, why couldn't I be normal and use that? Needless to say, it did not work out with that one!

By August 2011 I was completely out of topical steroids. No insurance, no refills, done. My roommate is a nurse and I told her that her job was to find a cure for my eczema. She had me try a few different remedies, including oatmeal baths and soaking my face in a bowl of water & oil. My face hurt so much and was so ugly. I worked at a retail store and since I was always dealing with The Public, I wanted to be able to wear makeup. It usually did not work out too well. Or if it did, by the end of my four-hour shift, my face was flaking apart.

I was completely out of topical steroids by August 2011 and my skin was suffering. I was trying to hold out until the middle of September, when I started my new job and got health insurance, but I couldn't. I now know that I was starting topical steroid withdrawal but again, did not know that at the time. All I knew was that I hadn't started my new job yet so I did not have health insurance. Soaking and moisturizing and taking fish oil supplements and cold showers -- nothing helped.


If I had known about topical steroid addiction, I should have stopped right there. I was already a couple weeks into it. I could have pushed through. And today I would probably be 100% healed and DONE. But I didn't know about it and I just thought that my terrible eczema was out of control without my medicine. I went down to the Minute Clinic at CVS on the corner and met with the nurse practitioner. I brought my mangled tube of halobetasol (which I had cut open so I could scrape out every last bit) and asked for more. She wrote me a prescription and referred me to another dermatologist.

A week later, my skin was normal. Well, normal for ME which was a little drier than it should have been but still, rash-free on most of me!

Although I would probably be done with TSW if I had known to stop then, I'm glad it worked out the way it did. I was starting a new job and would have had trouble taking time off work. (Although I haven't had to take significant time off, I had to take several days here and there during Month 1-3.) And, maybe more importantly, I had my first date with my boyfriend in the middle of September. There is NO WAY I would have gone on a first date during Month 1-3 of topical steroid withdrawal. So I probably would have never met him.

I started my new job and got my health insurance, found a new doctor who prescribed me the same two topical steroids I had been using for my body and face. I was still having trouble with my hands and sometimes my lips and chin would get very dry and tight. Also my eyelids were red a lot but I just kept trying to cover the redness up with makeup.

Since my hands continued to have the rash, I was still embarrassed for people (especially my boyfriend) to notice my hands. Early on in our relationship, I was so anxious and finally had to have a Talk...about eczema! He was obviously cool about it (because we're still together!) and probably doesn't even remember me talking about it. But I was so anxious. It made me feel embarrassed and ugly. That boy in elementary school who told me I had ringworm from picking my nose...well, even though it was stupid (and I eventually discovered the wonders of Google), that always stuck with me. And I always felt dirty and ugly and contagious. So I was very anxious to bring it up but I didn't want him to think I was contagious.

2012: I continued "treating" my eczema with the topicals. Spring of that year, I was tired of my makeup flaking off and looking like Voldemort. I turned to my trust sidekick, Google, and looked for makeup recommendations for people with eczema. On some random eczema forum that looked like it was a 1999 AOL chat board, someone suggested that the original poster might have Red Skin Syndrome. I had never heard of that so I searched that and came up with the International Topical Steroid Addiction Network. I read all of the reports and looked at all of the pictures. I identified with a lot of the signs in the "How do I know if I have RSS?" answer. I found a link to Peter's blog and read the whole thing. Then a link to Kline's blog and read the whole thing. Then I found more blogs and read all of them. Then I read the FAQ again and Dr. Rapaport's articles again and I knew for sure this had to be what I had.

I was scared, though. The pictures show how terrible it can be and I knew I couldn't quit my job. But I knew this was me. So I told my friends and my boyfriend: this is what I have. I am going to stop using this medicine and I am going to get really ugly for several months. Eventually it will go away. Please support me.

And they all did. I don't think I could have done this otherwise. It's very scary to see the rash you've fought every day for years cover your body and know there is nothing you can do except wait. It's very depressing to see yourself look unrecognizable in the mirror. It's frustrating when nothing soothes the unbearable itch and you're exhausted from being up all night and you're freezing all the time and you look like a monster.

But here I am, every day a little bit closer to curing my "incurable eczema."