making the invisible illness visible


By: Kayla Adams

January-8-17

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Do you remember how old you were when someone first told you not to judge a book by its cover? It’s an idiom that dates back to the 1940s so if you’re alive today, you’ve at least attempted to internalize its message. We’re told not to judge a book by it’s cover, but we all do it. Studies repeatedly show that more attractive people are ascribed positive personality traits (like kindness and intelligence), and tend to be given unfair advantages (raises, promotions, acquittals).
This also means, that we often conclude that people are either capable or incapable based on the way they look. The problem is, that most of us who live day in and day out with chronic illness and pain, don’t look different from the healthy people all around us. Unless a disability is blatantly physically obvious, able-bodied people assume I’m just like them.

And when you live with a condition that defies others’ ideas of illness, or can’t be placed neatly in a certain box, the burden falls on you to try to make the invisible visible. This is a huge weight to carry when you’re already exhausted and weak from the strain of pain. It feels almost impossible because of  misunderstandings over what it really means to be disabled. Just because I’m too sick to work today, or to go to a birthday party on Satuday, doesn’t mean that there aren’t Wednesday happy hours when I’m well enough to go to the bar with my mom and granny.
Every person with chronic pain knows how difficult it is to constantly adjust to unpredictable symptoms and fluctuating pain levels. Our limitations may allow us to engage in an activity one day that is completely impossible to even consider the next–or even again later that same day.
A few months ago (wow, has it been that long already?!) I helped my brother set up a spot to propose to his now fiancee. It was on the river and about a 10 minute walk from the parking lot. I had to take four trips back and forth, carrying different items (flowers, wooden crates, blankets, etc.). Anyone who saw me doing this would have simply thought I was a normal 28 year old, carrying weird shit around at the river.
In reality, it took me over a week to recover from that hour or so of activity. I couldn’t work for two days afterwards.

As a healthy person, you tend to assume it’s all or nothing: we’re either sick or we’re healthy; we’re either in pain or we’re not. If we’re seen doing anything “normal” we must feel fine. You view health through your own lens, and it’s not your fault. It’s all you know.  If you did what we do it would be because you were being lazy or seeking out a luxury.
But in actuality, we’ve prepared extensively for each activity (I have to have a nap before I do anything in the afternoon or evening) and are still almost always guaranteed to be bedridden afterwards from a flare-up of pain.


Our culture celebrates health and beauty. As women we’re told our body hair is repulsive, we can’t be too pale or too dark, cellulite is demonized. Beauty is idolized. We judge books by their covers and if they aren’t beautiful, what’s inside them matters much less. Striving to be viewed as attractive has been a huge part of my life. It’s something I try to work  but don’t know if it’s a desire I’ll ever rid myself of.
I was riddled with anxiety about the fundraiser I had last weekend. There were going to be so many people there. I didn’t want them to see me looking ugly; looking like I normally do with no makeup, huge bags under my eyes, frizzy hair, sweat pants. BUT, if I didn’t look like that, would everyone doubt how sick I really am? If I post pictures of me looking normal, will everyone think I’m faking? Seeking sympathy? Scamming people out of their hard earned money?
And what if I act too happy or perky? I spend a lot of time on the phone for work, talking to other employees of the same company I work for who are in other offices around B.C., and after learning about my upcoming surgery, they’ve been so shocked to learn that I’ve been sick for so long because I always sound so animated and happy on the phone. But happy is not healthy.

Since chronic pain, exhaustion, and their resulting symptoms are seldom seen, people can have a hard time believing that anyone who looks healthy, attractive, or who behaves animatedly can have so many profound, life-altering symptoms and limitations.

And I can’t blame them. There are very few of my symptoms that are outwardly visable even to me. There is blood in the toilet a lot, and my stomach can bloat to the point where I look three months pregnant. Other than that, often times I look in the mirror and I look healthy enough, but I can feel broken glass cutting up my insides, and it’s so easy to feel like it’s my fault that my body has broken down in some way; or that maybe I am being a wimp; oversensitive. 

It’s always so self-affirming to see images of my insides looking rotten and disgusting, because it’s proof that I’m not crazy. It’s like plastering the outside of a book with the story line. Suddenly, I’m able to see that I’m really sick. And, as they say, seeing is believing.
But I can’t walk around with surgery pictures pasted to my clothes in some strange and pathetic attempt to get people to take my pain seriously. Can I? Maybe… No, no, I can’t.

 

All I can really do to lessen the impact that the problems of invisible illness have is to try to communicate the fact that chronic illnesses affect a person’s entire being: heart, mind, body, and soul. They change the ways we can move in the world. By talking about it, I’m doing a little something to help make the invisible, visible. And hopefully, even though you may not be able to see the cause and results of our pain, you can take steps to try to really ingrain that 70 year old adage: don’t judge a book by its cover.

 

visit Kayla's Blog, dead uterus society.