Anecdotal Stories of My Life with Eczema

I was the youngest of four girls and — just to drive home the point of the terrible triad they call allergies, asthma and eczema — all of my three sisters suffer from something in the immune compromised area. In fact, my oldest sister died of asthma-related complications when she was 30 years old. She also had eczema. She had been on steroids about half of her life, and by her late 20s she had severe osteoporosis and was in a nursing home. And, frankly, she just lost the will to live.

Looking at me now, you are probably saying, “She doesn’t look that bad; she looks fine.” Perhaps you’re thinking that I’m exaggerating about my background. Well, I can assure you that I have the same stories that you do. I remember that in kindergarten none of the kids would hold my hand. When I told my mother, bless her heart, she said, “Honey, I’ll hold your hand.” And she did; she held it unconditionally anytime I needed it throughout my whole life. Thank goodness for the love that we feel from our families!

In my message today, I’ll try to be somewhat balanced. I’m sensitive to the adults in the audience who are suffering greatly and feel as if they’ll never improve. I also know that there are many parents here who hope that their kids will have a normal life. So I’ll try to be as balanced as I can.

I do think when you have chronic skin conditions as an adult you are afraid to have hope. You wonder if you should just say this is the way it is and muddle on. I don’t know the answer to that.

I think I did all right managing the disease for most of my life, but over the past five years (starting at about age 36) and probably through the goodness of God, I feel as if I’ve outgrown most of it. In fact there are days now that I don’t think about eczema at all.

I probably have habitual itching from time to time but I don’t even recognize it. I’m sure it’s hard for some of you to imagine that you will ever go one single day without thinking about eczema. But I really do have those days — although I will say that on a daily basis I wake up and thank God I’m not the person I was before, the person I was with eczema.

In the room here today is my sister Suzanne, who was perfectly normal growing up. She had no eczema, asthma, or hay fever, and I used to be incredibly jealous of her. We were very close growing up; we shared a bedroom, we shared friends, and we played together. She was two years older than me and she was my protector. When I was about five, we would wear beautiful white dresses to church, and the church people would say, “Oh, goodness, honey, what happened to your legs?” And my sister would stand in front of them, put her hands on her hips, and say, “She fell off her bike.” We used that statement a lot. We probably said it hundreds of times. I think the church people thought that I was a reckless kid.

Our father was a fighter pilot in the military, a real cocky guy. He was raised as a Christian Scientist, and he basically believed that doctors and medicine are something that you shouldn’t use. So it was fairly challenging for us in our household.

There was not a lot of sympathy for my itching — particularly when my oldest sister simply couldn’t breathe. I was the youngest child, and I wonder if this allowed me to grow up a bit more normal in that I desperately wanted to keep up with my older sisters and my bad skin was just not on the radar screen of my chronically ill older sister.

I have a few awful stories that I think many of you can identify with. I remember that the day of school photos was just a traumatic day. Because of the allergies and the eczema, my eyes were always ringed like a raccoon. As an adult, I went through boxes of family photos and burned or cut up or threw out all the ones where I thought I looked horrible. Many of you have probably done that. And those of you with children with eczema probably hesitate to take photos of your kids on bad flare-up days.

One event was particularly hard for me. As you can imagine, my dad was ever the hearty military guy, a big he-man. He wanted to take a camping trip and he announced to the family that only the real Hoff girls would join him on the adventure — meaning that my older sister and I would stay home and the two middle sisters who were much healthier would go with him. All of my life including today I’ve heard how amazing that trip was and what a great bonding experience it was. I don’t think my dad realizes how cruel that statement was, how hurtful that experience was for those of us who were left at home.

When I was 10, I developed very painful staph infections. Behind my knee I had boils so large I couldn’t really walk, so I limped through school and I was on antibiotics for seven solid years.

There’s an old wive’s tale that staph infections goes away after seven years, and they did! At exactly seven years they went away, I’ve never had another one.

I also remember funny little things. After I got my driver’s license, I would often drive through McDonald’s with my friends. The palms of my hands were very bad then and the left palm was significantly worse, so I would reach over and get the change from the teller with my right hand. Thankfully I was actually quite popular and my friends didn’t laugh at me.

Despite my eczema, it was really my nature to attack life. I was a good student, and I was very athletic, I enjoyed sports. I played ten intramural sports in college and kept as busy as I possibly could. I do think having eczema made me chronically tired. I’m still tired; I can fall asleep at any time, any place. I think for that reason I kind of became an adrenaline junkie. I would go to any party, any social activity, any sport, anything that kept me awake, that kept me moving, and then I would go home at night and be totally exhausted and just fall asleep.

After college, I went into sales — probably because it fit my personality. And I was fortunate; I was very successful. I quickly rose up the ladder in some large medical device companies.
I remember that college was actually a pretty good time in terms of my skin and I don’t know why. I went to a school in the South, in Houston, and probably just had four pretty good years. In my twenties, my skin got a lot worse. Some of you probably think that was due to stress. I’m not sure I believe in that, but I did get more and more involved in my career. I remember there were times when I was giving presentations to the CEOs of large corporations, and as if that was not nerve-wracking enough, my face was burning and bright red and I just could not contain my desire to rub it. One guy raised his hand and said, “Gosh, you must have been out in the sun, Elizabeth, because your face is bright red.” And I said, “Yeah, yeah, you’re right,” acting as it I was sunburned. I think about all the lies that I told to all these people. . . .

I was also, as you know, exhausted from the night before, from not sleeping.

I look back and I wonder why I didn’t call in sick on many occasions. I really didn’t miss work very much. Once or twice, when I was about 22 or 23, I went home in the afternoon and just covered myself with salve and went to bed for the rest of the day. I just couldn’t hold it together on those days. I probably should have done that more throughout my career; instead I kind of plowed through.

Throughout my twenties, I never really discussed eczema with my friends or colleagues. I’m sure that they knew that something was wrong, but it was my problem and I didn’t feel like talking about it.

As my skin got worse, I went to doctor after doctor. And every doctor would go, “Oh, yeah, your skin. . . . Let’s talk about your asthma.” I kept saying, “I’m not here because of my asthma, I’m here because of my skin.” And they kept saying, “No, no, the asthma . . .”

I’m sure all of you have doctor stories too. I’m not into doctor bashing. I think that when there is little that you can do in terms of pharmaceuticals, research, et cetera, God bless the physicians that’ll sit and listen to us about this. And we clearly have some incredible doctors here who have devoted their lives to study something that’s not sexy, an area where there’s very little research money.

At the height of my eczema, when I turned 32, my company asked me to move to Europe to run a sales and marketing division, and in my quest for career advancement, I agreed to the request. I found myself living in Belgium, which is a French-speaking country, and I couldn’t speak the language. Belgium is in northern Europe, and it was very rainy, very cold, and very dreary. The molds were incredibly high because of the rain. On many, many Saturdays I never left the couch, and I was still on that couch all day on Sundays. I was exhausted from just holding myself together for the week. I felt a tremendous sense of responsibility for the team I was managing, a team of 75 employees, and I felt no support from the executives there, so I felt very lonely and isolated.

My skin was so bad that I would wash the sheets every Tuesday morning. Why then? The maid came Tuesday afternoon, and I was embarrassed by all the blood stains on the sheets. I didn’t want her to know about my eczema, so I washed all the sheets and towels before she got there. I also dry-cleaned my very expensive suits after each time I wore them. Can you imagine the thousands of dollars I spent over the years on dry cleaning?

There was one really great advantage about living in Europe and doing business in Europe: you didn’t shake hands with your customers; you kissed them on the cheek. I absolutely loved that because I never got comments like “Good God, have you been washing dishes all your life?”

I did take a new tack in my thirties in Europe: I decided that I wasn’t going to hide my eczema from my colleagues and my friends. I would tell my friends, “I am having a bad day, tread lightly. We’re not going to discuss personal issues today. It’s just not a good day.” The response — the understanding and the outpouring of support — was incredible. What a difference it makes if you just come out and talk about it and tell people what you’re going through! I felt a great sense of relief that I had come to terms with this. So that was probably the best thing that happened to me.

I think what most people don’t understand about eczema is that it’s not just that your skin is bad, it’s not just that you look bad; you’re also having this systemic response. When I’m having a bad skin day, I feel awful. I am a control freak; I like things exactly the way I like them. And I am irritable; my fuse is short. I think that’s the more damaging part of a bad skin day.

I eventually decided I was not going to make personnel decisions or handle any HR issues on days that I felt bad, because I felt like I might just sit down in front of an employee and say, “Great, you’re fired, bye-bye,” which would have been unfair because it was just about how I was feeling and not what they were doing.

One particular day I went to a Belgian hospital, and I just sat in the emergency room and cried. Thankfully there was this lovely woman who spoke English. And I just said, “I can’t live like this. Can you help me?” There wasn’t much she could do. We started a series of tests and all the usual stuff, and eventually I ended up having a good day. The coming clean was help enough.

Throughout my time in Europe, I would pray that the worst days didn’t happen when I had to give presentations to the executives.

After three years of this, I wasn’t exercising and I felt like my health was declining. Frankly, I was destroying my life. I was irritable and bitter. And I don’t think I was a very nice person. I finally just up and quit my job and moved back to the U.S.

I moved in with my sister, Suzanne, in California, and my major goal was not to find work but to turn my life around. I needed to get healthy, to figure this out and do whatever I could.

When I look back at my Belgian experience, I weep for myself. In terms of health, I did everything wrong. The more money I made and the more my career advanced, the more I wore beautiful cashmere suits, beautiful wool suits, thousand-dollar suits. Since I was living in a northern climate, I also had to have beautiful wool coats and wool scarves and wool gloves. And my skin got worse and worse. I’ve since come to realize that I am very, very allergic to wool.

When I was having a bad day, I would lay on a sofa all day long. Well, that sofa was 10 years old, and it had moved three times in the U.S. before moving to Europe. I am now convinced it was covered with dust mites.

I also drank red wine every night. I’ve since learned that red wine is something I just can’t do. Even now when I feel healthier than I’ve ever felt, if I drink too much red wine, I itch for days. So, much as I like it, it’s just off the charts now.

Let’s fast forward to now. I’ve been back in the U.S. for six years. I’ve joined a company where I can wear casual clothes all the time. It’s a little mountain company, but it’s very successful in the medical device world. The people are very nice people, I feel incredible support from the executives, and I can work from home on some days. I do think that that’s made a difference in my life because I can turn it on and keep it on in the office, at meetings, at dinners, and entertaining clients, but then I can go home and work from home, wearing shorts and a T-shirt.

I live in a warm climate, and I’ll never live in the north again. I will never wear a wool suit or a wool coat. I date a surgeon who doesn’t wear wool suits to work so that’s great. And when I’m at meetings with people who are wearing wool suits, I try not to touch my face, and I wash my hands frequently. But inevitably at the end of these meetings, I’m never quite as good as I am when I started the meeting.

I never drink red wine; I drink vodka or white wine instead. (I’m not willing to cut everything out!) I wash all my clothes and bedding in hot water. I sleep as often and as much as I possibly can; I think sleep is an incredible thing.

I’m not sure I really believe that stress affects my life as much as what comes from stress — sleeping less, eating crap, drinking too much, et cetera. I have an incredibly stressful job right now; I’m not not under stress. But whenever I’m feeling like things are going to spiral out of control, I try to keep the stressful job but make everything else okay.

Whenever I lie on my sofa, which I still enjoy doing, I lie on a blanket and I wash that blanket every single week. I never lie directly on the furniture, and I think that makes a big difference.

I will only live in a place with hardwood floors — particularly in the bedroom.

I find that lower SPF sunscreens help, while 30 and 45 SPF sunscreens make my skin break out. I think getting a little bit of sun actually does help me, though I know it doesn’t help many people.

I take acidophilus religiously hoping to make my gut better after seven years of abuse of antibiotics.

I think the best thing I did when I moved back to the U.S. was to try to get healthy in other ways. I find that the more I exercise, the better my skin.

I had this wonderful allergist that counseled me through a couple years when I was in my early to mid-twenties. He said, “Elizabeth, you’ve got to realize that what you’ve got is a cup, and it can hold only so much. You can be around a dog. You can be around a cat. You can drink wine. You can not sleep. You can do all of this, but your cup runs over at some point.” So I’m trying to make sure that the cup doesn’t run over.

For instance, I feel pretty good these days, and I went to visit a friend of mine who has a dog, and I was okay. Was I great? No, but I could handle it because the cup wasn’t full when I went to visit her. For me it’s a matter of constantly assessing of how to get and keep everything in check. And exercise and maintenance of my overall health really does make a difference in my life.

If you can work in an environment where people are very accepting, that also helps a lot.

I think back to other things that have mattered in my life, and one was the attitude of my mother. She never made me feel weak, never scared, never unloved. She also never made me feel overly special in having the disease. Frankly it was just kind of par for the course.

She treated me very normally, as if I didn’t have a disease, and encouraged me to do whatever I wanted to do. She never held me back from activities saying, “Honey, I don’t think you should do this because you’re not going to feel well.” If I wanted to do something, I went and did it, and if I felt bad as a result, then that was feedback for me. That helped me to make future decisions about what to do and what not to do.

I remember as a kid wanting to spend the night with a friend who had dogs and cats. Every time I said, “I want to go sleep at Pam’s house,” my mother said, “Okay. If anything happens, call me.” And there were more than one or two nights where I would call at midnight and say, “Come and get me, I can’t handle this.” I was wheezing, my eyes were itching, et cetera. And my skin was horrible. But what I appreciate is the fact that I quickly learned to make my own decisions about what I would and wouldn’t do. And that has mattered in my life.

When I was 14, my mother got me a makeup lesson, which was an incredibly wise thing to do. I think the makeup helped dramatically in high school. And my mother encouraged beauty in other ways. She would say, “Honey, you’ve got the most beautiful fingernails,” and so I would paint my nails. She also was very good at building self-esteem in things that were not even beauty-related: “You’re a really great tennis player, why don’t you keep it up. And you’re very good at acting.” I really don’t remember growing up with a tremendous lack of self-esteem. I certainly I had bad days, but there was something that my mother did — or maybe it was my innate nature — that helped me hang onto some strength.

The hardest thing I think for kids, particularly girls, who have skin issues is wondering, “Will I ever be loved? Am I lovable?” I’ve spoken to some dads here who are incredible, and I think that the role that fathers have in the lives of their little girls is so important. Make sure that they know that they are lovable, that they are beautiful.

Now I want to talk about some positive things related to eczema. Because I have no moisture in my skin, I’ve never had smelly shoes, I’ve never had smelly feet. And when I read a newspaper on the airplane, I don’t need little hand washes because newsprint never gets on my hands. I’ve never had acne, and as a kid growing up in the Midwest, mosquitoes never bit me. They couldn’t get through the toughness of my skin, I guess. So there are benefits to everything in life.

At this point in my life I’m happy and I am probably the healthiest I’ve ever been. I think time has helped tremendously; I haven’t done everything right necessarily. I think in part I’ve just outgrown my eczema.

I’m seriously involved with a wonderful man named Allan, who is here today. He’s actually a doctor and so he deals with ill people and I think he’s pretty good at understanding where I’m at. He calls me the swan. I’m kind of emerging out of the ugly duckling stage, I guess.

We had an argument one night about the TV. I’ve come to warn people about my bad days, and when he called one morning, I said, “I’m really not having a good day, my skin’s bad.” He came home that night and took one look at me and said, “You don’t look that bad.” Later that night we were discussing what to watch on TV and I said I want to watch a certain show. I had been thinking about it all day; it was on my mind. And he was like “Jeez, what’s the big deal?” And I said, “I’m having a bad day, can’t you just do it my way?" I think all of you understand that. Often it’s really not about the skin, it’s about needing to control your environment when you can. So now on the nights that I’m not feeling bad, I let him watch whatever he wants to watch and everything works out really well.

I previously mentioned my sister Suzanne, who continues to be a source of inspiration. I don’t know whether it’s worse to grow up with an autoimmune disease as I did and never know any differently or to be struck with one later on. Suzanne was perfectly normal until she was 16, and then she got struck really massively in the midst of high school, in the midst of dealing with all the pressures of being a girl. She suffers a lot more than I do now and I get to give back to her in terms of counseling and support what she gave to me as a kid. I frankly don’t know what I would do without her. My hope is that all of you have someone with whom you can share your deepest, darkest moments because the loneliness and isolation of this disease are worse than the physical aspects.

I still feel like the world can end any day for me. I live in fear that it’ll come crashing back to some of the deepest, darkest moments. I don’t know if there really is such a thing as remission in eczema — or how long it lasts. Every day I get up and thank goodness that I’ve got more energy and I feel better than I ever did. But I also feel lucky because through this disease you find your family, your friends, those people who stand by you, who don’t really care if you’re having a bad day. I’ve made some tremendous friends over the years and I’ll never let them go. Every day I get up and I’m grateful for them.

I’m going to close by saying that my work on the NEA Board of Directors has been very satisfying. I wish I could give more time and effort than I do and I hope to and intend to in the future.

But nothing can happen without funding from you all. We need to have more funding to be able to fund more research. So please do put us on your annual giving list. And, if you can, do fundraising activities in your area. I promise you as a Board member that we will use your funds in a very responsible way. We will only fund those things that we think have a positive impact on the future of your children and all children with this disease. As you know, we hope we can wipe out this disease some day. So that’s my personal plea.

Thanks for listening.