A 2016 survey estimated that 3.5 per cent of Canadian adults experience atopic dermatitis (AD). Adults who have moderate to severe AD can experience symptoms that may affect sleep, mental health, quality of life and productivity.1 Amanda is one of them. For her, AD is not “just a rash.” It’s a chronic skin condition that, when she’s in a “flare,” is agonizingly painful and makes it difficult to participate in social activities and to concentrate at work.
‘‘During my most recent flare, the dermatologist said, ‘You can’t go to work like this,’ and she wrote me a doctor’s note without me having to ask.’’
How would you describe your AD symptoms?
I’ve had patches of dry, scaly, open skin with itching, burning and cracking since I was a toddler. When I was a child, it was mostly on my arms and legs. As an adult, it’s spread to include my trunk and face. It’s not cancer, not a stroke, not one of those things that people can die from. It’s skin. But it messes with you. Two years ago, I had the worst eczema of my life. It was at least six weeks, maybe two months, of really cutting myself off. I didn’t even want to get groceries. I didn’t sleep. I was on fire. I was so itchy. And I was this close to going to emerg. When I was going through that, I don’t think anyone really got it. I don’t think they understood what it was like to be up all night with intense itch and burning skin and not being able to do anything about it.
How do you remember AD affecting you as a child?
After my bath every night, the routine was that my mom would rub cream on my arms and legs and she would joke, “We’re putting your cast on.” Sometimes she would wrap me up in plastic wrap and then put long shirts and pants on me so I wouldn’t scratch the cream off in my sleep. I also remember standing in line in elementary school and one of the kids behind me saying, “Ew, what’s on your leg? Don’t touch her. It’s a disease!” It was normal for me, but it was hard when other kids noticed it.
What impact has AD had on your personal life as an adult?
It has impacted me socially. When I was in a flare, I would cancel plans with my friends. I didn’t want to go out when my face was so inflamed. My friends would say, “It’s just a rash, come out, it’s no big deal.” But it was hard to get them to understand that it’s not just about how it looks. It’s also about how you feel when you’re in a flare and it’s on your face. All you want to do is touch it and scratch it, so you don’t want to be out in front of a lot of people.
How did you cope with and manage your symptoms at work?
There were times that I went to work when I was in a flare and I would stay in my office and not really be able to concentrate, so it was a wasted day. If I had an option of not going to a meeting, I would try to get out of it because I didn’t want to sit in a room full of people. If I had to go, I would try to physically move so I could hide my face. During my most recent flare, the dermatologist said, “You can’t go to work like this,” and she wrote me a doctor’s note without me having to ask. I was so relieved because it wasn’t me complaining about a rash. It was a healthcare professional recognizing the severity of the symptoms I was experiencing.
What could your employers have done differently to better accommodate your needs?
My employers have been generally supportive. But years ago, my dermatologist asked my then-employer to move me out of an office close to a lot of files and a printer that she thought might be aggravating my eczema because of dust mites and perhaps chemicals. That employer did move me for a month or two – but then moved me back. A more permanent accommodation would have been helpful. Employers could also be open-minded about modifying the workday a little bit so that if someone is up all night scratching but is still able to concentrate, they might be able to go in late to work.
What would you tell other people with AD based on what you’ve learned?
I’d tell them that it’s not just a rash, and don’t be discouraged when someone says, “Oh, I had that when I was a kid. It went away and I never saw it again.” That’s something that really irritates me. I wish that was my experience, but it’s not. Whenever people make you feel uncomfortable, use it as a teaching moment and explain what AD is so they don’t hurt someone else’s feelings. Sponsorship for this interview was provided by AbbVie Corporation. The statements, opinions and viewpoints expressed are those of the interviewee, and may not be representative of all patients, nor do they reflect the views of AbbVie Corporation.
Sponsorship for this interview was provided by AbbVie Corporation. The statements, opinions and viewpoints expressed are those of the interviewee, and may not be representative of all patients, nor do they reflect the views of AbbVie Corporation.
1. Source: Barbarot, S., Auziere, S., Gadkari, A., Girolomoni, G., Puig, L., Simpson, E.L., Margolis, D.J., de Bruin-Weller, M., and Eckert, L. “Epidemiology of atopic dermatitis in adults: results from an international survey,” Allergy. 2018;73:1284–1293