In the Blog


February 1st, 2016     by Denise Reich     Comments

Illustration by Erin McPhee

When you have a chronic illness, you end up learning how to function in a new reality. I’ve personally grappled with serious financial concerns; clashes with family and friends; and a distinct feeling of alienation, among other things. Part of this new reality: walking around with a germ mask.

My immune system is thrashed, to say the very least. In the span of ten months, I’ve come down with more respiratory and ear infections than I did in the five years previous. When I was younger, I would have shaken them off. I once did a school play while I was sick with scarlet fever, even. Now, however, I’m knocked flat for weeks.

My doctors constantly warn me to try to keep from getting infections. I spend most of my time at home, which helps with this task. When I do venture out into the world, though, I take precautions. Growing up in a major metropolis, there were two rules my family always followed when I was a kid: you took off your shoes and washed your hands as soon as you got home. I still adhere to that as an adult. Now, however, there are even more protective measures to take.

There’s constant hand washing. I try to avoid handshakes and kisses on the cheek. I don’t let anyone touch my face if I can help it. I don’t read library books in bed. I use my own pens when I have to fill out forms in doctors’ offices. I take supplements and eat foods that purportedly boost immunity. Whenever I see a dispenser of anti-bacterial gel in a store, I always take the opportunity to cleanse my hands. People have started giving me small bottles of anti-bac as presents. From my Mom I have Purell in fresh plum and berry scents in pretty pink holders; my BFF gave me bright red “vampire blood” anti-bac and green “monster gel.” I go through them like water.

I also wear a germ mask when I’m in closed or crowded spaces with lots of people and little ventilation, such as buses and elevators. I use the disposable surgical masks that come 50 or 75 to a box; I always have a few extras in my bag. And oh, the drama they bring.

Ironically, when people see you wearing a mask, they automatically think that you are going to make them sick. The belief isn’t completely unfounded; in some countries it’s very common for ill people to wear masks when they go out to avoid contagion. Still, it’s amazing to see just how much of a pariah you become when you wear a mask in public. Even on buses that are standing room only, people will often refuse to sit next to me. Truth be told, I prefer to sit alone so I’m not particularly bereft about this, but I do think it’s awfully silly. When I take a seat next to someone else, they will usually tense up until I tell them, “don’t worry, I am not contagious.” Bus drivers don’t want to take transfers from me. And then there are the folks who stare. Endlessly. Little kids take it one step further and tell their parents how weird I look.

It isn’t everyone, of course. Most of the time I’m just politely ignored. Every now and then someone calmly sits down next to me on the bus. Curious people come up to me occasionally to ask questions. I don’t mind answering, so long as I’m approached politely. The people who seem to be the most comfortable with it, though, are those who are also touched by illness or disability in some way. On line at my favourite theme park one day, the couple behind me tapped me on the shoulder. “Do you have CF?” they casually asked. They went on to tell me that their granddaughter had CF – cystic fibrosis – and that she also needed to wear a mask whenever she came to the park because infections could be very dangerous for her. We laughed and talked for the rest of our wait and shared tips to avoid crowds and germs.

Due to discomfort – both physical and emotional – I cheat and don’t wear my mask as often as I should. I always yearn for fresh air, and although I’ve worked hard to find correctly sized masks, the loops cut into the back of my ears with extended wear. As a result, I look for any possible opportunity to unmask. I will often walk around without a mask until I am in a closed space or surrounded by people and absolutely need to put it on. When I’m in a “safe” space – a private restroom, a garden, a sidewalk without a lot of people – I immediately rip the mask off again. I know that the stares and comments I receive are nothing compared to what others might contend with, but it doesn’t help me feel any more comfortable about it all.

I’m honestly confused about why I even bother paying attention to others’ reactions to my mask. It’s not my style. I was mocked and bullied for my clothing in elementary school, but by the time I reached seventh grade, I’d completely stopped fretting about others’ opinions of how I looked or what I wore. I was the kid who sported black nail polish and Gothic clothing one day and showed up in bright tie-dyed leggings the next. As an adult that hasn’t changed; I dress however I please and I shrug when someone has an issue with my clothes, makeup or appearance. I wear what’s comfortable for me. The mask, though, is the one thing that makes me self-conscious.

My chronic conditions are, by and large, entirely invisible. People who know me well can see changes in my appearance, of course. My BFF has pointed out that even my posture is different now. She’s right. However, to the vast majority of the people I meet when I am out and about, I do a very good job of disguising myself as a healthy person. I’ve often needed to contend with those who have no idea what my illnesses are all about and don’t believe I’m sick because they can’t see it. When I first boarded the chronic illness train I spent a considerable amount of time trying to justify myself to the hecklers; even going so far as to add reminders to my Facebook posts: “I’m still sick!” Nowadays, I post what I want and feel that the skeptics can stuff it. I have neither the time nor the energy to deal with that sort of nonsense.

The mask rips away my disguise and forces me to remember my illness. It’s a neon sign sitting on my face that tells the world that I’m not healthy. I can’t pass for healthy. Something’s amiss. It’s been hard for me to handle that, even though it’s entirely true. I’ve accepted that I’m ill. I haven’t entirely accepted that the “ordinary world” I know, to quote Duran Duran, has changed, perhaps permanently.

Accepting one’s chronic illness in general is a long, arduous task. It’s compounded by the fact that your loved ones generally don’t want to accept it, either. Every time you talk to them, they’ll hopefully ask you, “are you feeling any better?” and grasp at any straws they spot. They never understand why you’re not as pragmatic as they are, even when you tell them that chronic illness tends to be a roller coaster. Feeling good on Tuesday doesn’t indicate how you’re going to be on Wednesday or Thursday. Everything is constantly in flux. Coming to terms with the fact that you honestly have no damn idea what might happen next takes a while.

I’ve tried to make the masks more comfortable for me. I’ve bought ones with cute cartoon characters and different colours; I’m constantly haunting Etsy to contemplate the custom masks that are available. It’s going to take more work on my part to make myself comfortable, though. And I’m up to it. Hopefully.

Tags: body politics

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