In Order To Appear Invisible, You Have To Be Invisible

I have, if only inadvertently, become very vocal about my illnesses (lupus and rheumatoid arthritis). When I started blogging 15 months ago, I never expected that I would become part of a virtual community of chronically ill people who are trying to raise awareness of the profound impact that illness has on patients, their families, and their friends.

I have made many friends this way, and while these alliances have become a cornerstone in helping me deal with my own illnesses, I find that I continue to do battle on a daily basis with the “outside” world, those in my immediate surroundings who are not chronically ill.

Here is an example:

Earlier this summer, I became acutely ill with a cough that I couldn’t shake. And it wasn’t until I was hacking up a lung that “normal” people started to take notice.

“Oh, are you sick,” they would ask. “You sound sick.”

And what I really felt like saying was, “I’m sick 100% of the time. This is just the 1% you’ve decided to notice.”

This is the exception rather than the rule.

The irony here is that it’s what was going on inside of me that matters. It wasn’t the fact that I was coughing up a lung (or at least sounded like I was). It was the fact that this occurred after going to the hospital for a doctor’s appointment, after riding the city bus. It is, in fact, the very invisible nature of my illnesses that were at play here. They had just decided to show themselves in a very visible, vocal way.

Those events wouldn’t cause “normal” people to get sick.

But if doctors haven’t been trained to look much deeper than giant, flashing tumors, why would we expect the rest of the world to? In many ways, illness is in the eye of the beholder.

My own mother refuses to see me as a “sick person.” But the truth is, these illnesses are my life. My life has become these illnesses. And for better or for worse, I live out each day, good or bad, because of these illnesses.

Yes, ignorance frustrates me. Because our world hasn’t been conditioned to believe in the possibility that young people can be sick – because this plays on our worst fears that the world is not a just, fair, or kind place – and that people in the prime of their lives can be struck down with no warning, with seemingly no reason, and lives can be forever changed, altered beyond comprehension.

And it also frustrates me that by virtue of that inability to understand, I am supposed to be strong, brave, resilient – any number of adjectives that describe youth and longevity. Yes, somehow, on the days when I am in so much pain that I can’t lift a half-gallon of milk to pour for my cereal, I am supposed to be strong and brave, and think that this is just some adolescent phase that I’ll grow out of?

But even for someone like me, who blogs about my illnesses, whose posts are fed through facebook, there are times when invisibility can be a good thing. When I travel to California in August, there is a very good chance that I will be wearing a mask on the plane.

I haven’t been on a plane in nearly seven years. And I’ve never had to wear a mask before. Anywhere. The thought fills me with dread – everyone is going to look and me and wonder what’s wrong with me. But given my susceptibility level, it seems like a prudent measure that I need to take.

It makes me realize that sometimes, invisibility is a luxury. The fact that I don’t have to wear illness on my sleeve all the time, while this tends to promote ignorance and unfeeling, also thwarts questions, long glances of sympathy and pity. It allows me to be in my own insular world of lupus and rheumatoid arthritis, while the rest of the world is kept at arms length, think that everything is just fine.

You don’t know what you’ve got ‘til it’s gone…

National Invisible Chronic Illness Awareness Week is important because no one is immune to illness – it can happen to anyone, anywhere, at any time – and by sharing our stories, we help to show that it is possible to live in the face of illness.

Leslie Rott is 23 years old. In April of 2008, at the age of 22, she was diagnosed with lupus and rheumatoid arthritis. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in Sociology at the U of M. She currently authors the blog Getting Closer To Myself, which chronicles her journey with chronic and invisible illness.

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