My Life With Eczema: An Adult Perspective
In looking back at my life, I think I’ve had eczema for a reason. I think it’s helped my kids, and it’s definitely drawn me closer to my sisters and my family.
I’m the third of four girls raised in the Midwest. In my family history, I have a huge atopic triad on both sides of the family. All four of my kids have dry skin. My son Jack, who is at the Military Academy at West Point, has mild eczema. He had been medically disqualified because of his skin three times and it took him six months to get into the academy. My daughter Ellen has mild eczema. Stress definitely flares in our family, so all of my children are somewhat affected by the correlation between stress and eczema.
My sister Becky was sick from birth and never had a normal life. She was not expected to live beyond 10 or 12 years old and she made it to 33 — which is a blessing. She got married, went to college, had a job, and achieved many milestones that thrilled my parents. But she was terribly impacted with asthma and eczema. And there just weren’t the medications then that there are now.
Becky was supposed to be in my wedding as a bridesmaid, but she was too sick to attend and even though I told myself that she would get better, like she did so many times before, Becky passed away while I was on my honeymoon. Becky being chronically ill was a big part of my life.
Next to Becky, Elizabeth was the second most-sick sister. Elizabeth has had enormous problems with her asthma in her lifetime, but it’s now well-controlled thanks to the drugs that are available, which makes me think kindly about these big pharmaceutical companies that have saved the life of my sister.
Growing up with Elizabeth and Becky, I didn’t think I had a condition because when you have two chronically-ill sisters sick with life-threatening asthma, comparatively, I was “well.”
By the age of 10, I had Sahara-dry skin and allergies, and then at 13, when puberty hit, I woke up one day and was covered — and I mean just covered — with eczema. I’ve had a systemic herpes infection for decades, from 13 to now, at the age of nearly 51.
But because I didn’t have severe asthma like my sisters did, nobody paid attention to anything I had, and I didn’t think I had anything serious. I just thought, “Why can’t I get this together? Why can’t I sit still like other people? Why can’t I wear clothes that other girls wear?” But I didn’t really think about it too much, because I had sick sisters.
This is what I think of as the “denial phase” of my life, when I didn’t think I really had anything because I wasn’t as bad off as my sisters. And, maybe it was good for me because I didn’t feel sorry for myself, I didn’t dwell on it — I just plowed ahead and didn’t really think about it.
Next came what I call my “delay phase,” where I knew I had something but didn’t act on it. In Atlanta, right out of college, I was diagnosed by an allergist — though he didn’t even tell me everything. Instead, he wrote a letter to my gynecologist or my internist and gave me a copy. He said, “I think you should read this.” It was the first time that anybody had indicated I had total body involvement with eczema. I was shocked reading in that letter that I needed “some significant help.”
By now, I was in my 20s and while it was kind of a relief in a way to be diagnosed with eczema, it was also kind of scary. I was told that because I was moving around so much, I should just wait on seeking treatment. “Senior citizens don’t have bad eczema, allergies get better, and time is on your side,” they said. Yadda yadda yadda. So I just figured that doctors would treat me down the road; I had hope and I really thought things would get better.
After I had one … two … three kids came my “distraction phase.” Pregnancy didn’t knock it out of my system, like it did for some. (I’ll tell you menopause hasn’t knocked it out of my system either). I continued to get worse and I couldn’t find a way to make it better.
I worked to get my mind off of the problem. This was probably the least helpful phase, to be honest. I just fought it and tried to push it down too much. I’m not proud of that period but it was a tough time. I was stuck in California — a state this Midwestern kid didn’t expect to be raising a family in.
California was expensive, felt really high pressure, and the whole physical appearances thing was just wearing me down. I felt (and sometimes still feel) like an imposter. It is rough, as my sister said, to feel like a physical freak in the land of beauty, in the land of Hollywood, of athletics, of swimsuits, and pornography. When all you want to do is cover up, stay inside, turn on the air conditioning, and wear cotton, it’s difficult.
It’s made me tougher, it’s made me better, it’s made me more compassionate, but the last 18 years were tough years for me in California.
The fall of 2011 was a challenge and by Christmastime my hair was coming out in clumps. I was humiliated. Why my hair? I’m a freak in Southern California with my body — and now my hair gets taken from me? All I could make of it was “I need to deal with this, I need to do more of something.” I didn’t need to clamp down harder and I didn’t need to work harder, because whatever I was doing wasn’t working.
My husband was so encouraging. But it wasn’t until this point that I came clean with him. I’ve known my husband 25 years but until four or five years ago, I hadn’t shared with him how significantly I was struggling.
I thought I was doing him a favor by not passing the stress on to the family. I just thought, “I don’t need to share my junk. This is my problem and I’m going to do the best I can.” But it didn’t work for me and everything fell apart.
I talked to my husband and he said, “Of course I know. I know you’re getting worse and I know you’re struggling.” I felt stupid to think I had ever hid it from him. I know it sounds insane to think you can hide something like this from your spouse, but I had four young kids and a husband who owned his own business, and life was going a mile a minute. Somehow, I didn’t think we had time to sit down and talk about my issues and healthcare. But when I started to lose my hair, I thought, “Okay, I am totally exposed, I am at rock bottom, and what the heck am I going to do?” And that’s when my two sisters encouraged me.
By then my sister Cindy planted an essential seed for me to get help and the care I needed. (I share this because maybe others do this for someone, too). We were talking on the phone and I was bereft. Even though I consider myself a strong person, at this point I had no hope. She told me, “I’ll take care of the kids. I know you always talked about going to National Jewish Health in Denver — you need to go.” That was the breakthrough for me. So I said, “Great, I’m going to National Jewish.”
That was the summer of 2012 and National Jewish had been in the back of my mind as, literally, my “Hail Mary” last option. I loved it there. I loved the people and the approach because I’m in an atopic triad — so I got everything else (my asthma and allergies) checked out as well.
National Jewish is tuned in and take a holistic approach, so it’s like a one-stop shop for all the issues. I got biofeedback and psychological help. I also I found a doctor who loved atopic dermatitis (AD). It’s unbelievably helpful to see a specialist who’s seen so many AD cases, that they can immediately say, “I can help you and this is what I want to do.”
Even if you have to go on an airplane, I suggest traveling to an AD specialist.
One year later, my hair started coming in.
And then, hope. The last part of my story is that I’m calm, I’m comfortable, and I’m not scratching. My kids say you wouldn’t know that two years ago I’d lost 80 percent of my hair.
The story ends well. But I want to share with you the many things I’ve tried along the way.
I’ve done the allergy shots three times in three different states and my allergist has said they certainly don’t hurt, but they haven’t improved my skin. Antihistamines? I mean I can’t live without those. I’m on and off oral antibiotics, though largely since I’ve been better, I haven’t been taking them.
Dust mite control is a huge thing for me. I just can’t say enough about this. It is one of my biggest triggers, so I’ve got my mattresses covered. I only sit in three places in my house. (I share this just because when one of my friends discovered this, she was surprised). I sit in my bed, obviously, which I keep immaculately clean, I sit in one leather chair in my family room, or I sit on a hard chair at my kitchen table.
If I go to anyone else’s house, I only sit on a hard chair. I will never touch their sofa or their comfy furniture, since upholstery and dust mites are huge irritants for me. Find places that work for you at home and just stick with them.
I tried vigorous exercise for stress relief. Because I am an incredibly stressful person the endorphins from vigorous exercise felt good, but it really irritated my skin.
We’ve all done food elimination diets, and I’ve done 100. I was very diligent about them, but it made my life worse. I felt more like a freak because I couldn’t visit anybody or go out to eat. It gave me some comfort because it gave me some control, but it didn’t help my skin. I learned it’s better for me to go easy on myself with the strict diets.
I joined the National Eczema Association (NEA) nine years ago after an allergist suggested I check it out. I can’t say enough about the organization. The soak-and-seal concept that I learned from NEA changed my life. I still take a bath about three times a week or as often as I can. I love how it allows me to calm down, relax my mind, and take time to focus on pleasant thoughts at night. I’m also a big fan of bleach baths.
Cotton clothing is all I’ve lived in for years until literally the last 12 months. Thicker moisturizers have also helped.
In terms of research, there are many clinical trials and the biologics are a game changer. I’m on a biologic right now.
My whole life has changed since last summer. It’s only been three years, since 2011 when I lost my hair, and my life is so dramatically improved. My children are thrilled, my husband is thrilled, and I’m so grateful.
My Message to You
While some of the treatments that have worked for me may not work for you, here’s what will: find people who you love and with whom you can really be totally deep down honest about your eczema. My sister (and BFF) Elizabeth has been with me on this journey. It helps immensely to find somebody to walk on the journey with you.
My husband has been a rock. I can’t say enough about the value of having somebody to walk with you, to hold your hand, to tell you you’re lovable when you don’t feel lovable, to tell you you’re attractive and desirable when you don’t feel attractive and desirable. Share the ups and downs with family and friends whether you’re mild to moderate or severe. Share the psychosocial stuff as well as your physical stuff.
Then, when you can, pay it forward — not out of guilt or obligation, but to get on the other side to a slightly better place like I am.
I hope if you see someone in the grocery store line who’s scratching — someone who could maybe be helped by the NEA website, a NEA brochure, or the NEA online communities — you say, “Hey, I see. I had some of those eczema issues, too, and it’s scary. There are people who understand and resources to help.”
Let’s go pay it forward and spread the news, continue to speak up and make a difference, because there is still research to be done.