Active Eczema Management: From Masking to Speaking Up

They say people do not always remember what you say, but they remember how you make them feel. I have found this to be especially true while navigating life with atopic dermatitis, especially in my younger years. I may forget the details of a conversation, a meeting, or even a date, but I rarely forget how my body felt in those moments.

The anxiety of unprepared flare-Ups

I can still remember a hot summer day from about twenty years ago. I was on a date with someone I had seen before. He picked me up and suggested we visit the former grounds of an amusement park. The rides had closed, but the grounds were open to the public. I cannot tell you his name, where he was from, what he did professionally, or what we talked about. What I remember is the sun beating down, my body temperature rising, and sweat collecting behind my knees and in the creases of my elbows until it turned into an intense itch.
As we walked, I kept scanning for shade or any place with air conditioning. I was not dressed for that kind of activity. If I had known we would be walking outdoors in the heat, I could have worn a hat, chosen more comfortable clothes, or planned in a way that would have been more accommodating.

Masking Eczema in professional and social settings

Years later, I felt a similar discomfort in a professional setting. When I was an executive director, we held our monthly ED meeting at a hotel instead of one of our usual locations. We were asked to leave our bags in the conference room, then surprised with a full-day team-building excursion on a nearby island. That meant taking a ferry and leaving behind my bag, the cool air conditioning, and any comfort items I normally relied on.

The activity involved renting a multi-person bike. It was meant to be fun, and maybe it was for others. But I do not remember the conversations or the leadership lessons we were supposed to take away. What I remember is pedaling in the heat, sweating, trying to stay engaged while silently counting the minutes until we could return indoors. I was the most junior executive director in the region, and I worried that asking to go back would make me seem uncooperative or even jeopardize my job.

Looking back, I do not hold either situation against anyone. The date did nothing wrong, and the team building activity was likely planned with good intentions. What stays with me is how much I was managing internally. I probably looked distracted, quiet, or less engaged, when really I was calculating the temperature, the sweat, the fabric against my skin, whether I could scratch discreetly, and how long I could hold it together before I needed relief.

Shifting from masking to speaking up for my needs

Over time, I have learned that speaking up helps me more in the long run than staying silent ever has. It may mean saying, “I get overheated easily. Can we do an indoor activity?” It may mean bringing an ice pack to a meeting without apologizing for it, choosing shade instead of pretending I am comfortable in full sun, or asking ahead about scented products if I am visiting someone’s home or staying somewhere like an Airbnb. These small acts of honesty reduce the mental load of managing everyone else’s perception of me. They also give others the chance to be thoughtful before a situation becomes uncomfortable.

Of course, there are still moments when I stay quiet. Sometimes I scratch discreetly, distract myself, or push through because I do not have the energy to explain. But becoming a patient advocate has taught me that speaking up for myself is also a way of speaking up for others. When I name what I need, I create awareness. I give people the opportunity to be kind, understanding, and supportive. Most people do want to help; they just may not know what living with a constant, active itch requires unless we let them in.

For me, active management is not only about creams, cooling tools, or avoiding triggers. It is also about no longer carrying the full burden alone. The itch may still be there, but I no longer believe I have to disappear behind it. If you live with eczema, what is one area of your life where you have tried to hide what you were really going through? And if you do not live with eczema, what is one way you could bring more curiosity, compassion, or accommodation into your role as a friend, family member, partner, boss, or coworker?