I may look like I have an infectious disease, but I swear, I am not contagious.
Have you ever seen someone with a rash or obvious mark on their face and found that you look again? Even when you know you shouldn’t?
I travel a lot for my work, and I can’t always just stay home when my skin condition flares up and I break out in hives or my face swells up. Last year I had several days where I had to give a speech in front of people and right before I went on stage, my eye started swelling. Or I would be at a customer meeting and my skin started itching and I became all read and blotchy.
It’s not like you want to enter every conversation with: “By the way, it is possible that I morph into a monster. Don’t worry, it’s not you. It’s me.”
Chronic illness can make connecting with people and traveling a very different experience. Because not only are there cultural things to consider, but also the fact that when in dense areas, people not only look at you funny, but start moving away from you.
I understand. Last summer, I traveled for almost three weeks to conferences and meetings in Brazil, Canada, and the U.S., where I spoke and about our free game, Shadow’s Edge, a tool that helps teens explore their mental health. Even before I left home, my skin was already breaking out. Let’s just say that waves of itching and burning skin made the 12-hour plane trip from Switzerland to São Paulo less than enjoyable in the cramped economy cabin.
I was lucky to have documentation in several languages from my doctor to prove that whatever I had wasn’t contagious. With the logistics handled, I walked to the gate, noticing the other passengers going out of their way to avoid me, worrying what might happen if I touched them. If I didn’t already feel horrible enough about myself, now I certainly did.
After a few days of intense meetings, my stress increased. It didn’t help that people stared at me, treated me with caution and that I constantly felt the need to defend myself. I wish that I could have just locked myself up in my hotel until it was over. But that is the other thing. It can last hours, days, weeks. And I have a job to do. So with increased worry and stress my lips blew up and my eyes swelled shut. Big blisters covered my neck, my back, my arms, my hands, and pretty much every part of my body and now no amount of clothing could conceal my condition.
Feeling like I’d just taken a deep dive into poison ivy after bad plastic surgery, while fighting the measles, I headed for the airport. I didn’t really want to see anyone, and more than that, I really didn’t want anyone to see me. Some people openly staring at me and others sneaking looks more covertly. The open ones are easier, at least it is interest and doesn’t make me feel like I am some dirty secret.
Going through customs and passport control, the agents struggled to match my swollen face to my passport picture and spent more time than usual making sure that I wasn’t bringing anything harmful into the country. Then I got to join them in a special room for “a few tests” – what were they looking for, leprosy? Measles? Bubonic plague? Some new kind of super-flu?
I don’t remember much of the flight because while we were in the air, my rash got so bad that the flight attendants used an epi pen to control the swelling. And even after an additional shot of cortisone that helped me lurch to my hotel, the symptoms didn’t let up. My next two days were filled with meetings, and since the condition was so visible, there was no way to hide it. Of course, I got a mix of reactions. Most people wanted to support me, offering suggestions for what the condition might be and how to treat it. They meant well, but I had already tried everything they suggested and pretending to graciously accept their input just added another layer of exhaustion. I felt awful. Staring made it worse. And on top of that, I had to try and maintain a positive attitude so that we could focus on our meetings instead of my disease. It was exhausting. And exhaustion does not make my symptoms better.
At the same time, the itching drives me up the wall if I don’t have distractions, and so instead of resting, I tried to see the sights, armed with antihistamines, cortisone, and the biggest, darkest sunglasses to cover as much of my swollen face as possible. Laying around the hotel room was excruciating, so I went out dancing at night with fellow conference goers. At least the dark lights helped to hide my skin and the music and dancing was distracting enough to make time pass faster – and while I was dancing, I didn’t notice people staring.
Fortunately, as suddenly as these outbursts come, they also leave again just as quickly, and after four days, miraculously, my symptoms disappeared just in time for the next conference. But the contrast in my appearance let me notice something important and, I think, in a way heartbreaking. I was still the same person. I was still presenting nearly the same material in the same kinds of meetings, with the same kinds of people. But the way I was received was completely different.
Because of how I looked, suddenly people were forthcoming and friendly, open and inviting. Without swelling and rash, suddenly it was like I was a person again. Nothing had changed, except everything had changed. That’s the real lesson of traveling with an on-again, off-again illness: How can we get to a place when people with illness are treated like people?