Chronic Illness and Stigma

Why Are You So Open? A Response

When people first meet me, one of the first comments I get about my personality besides “you talk a lot” (a true statement) is “wow, you’re really open”.

And that’s pretty accurate. Many of my friends who have known me for a long time actually think that I’m a little too open. There are very few topics that I deem “taboo” or “off-limits”, but what a lot of people don’t realize is that me being open is not something natural for me; it’s actually an active choice.

I choose to be open about myself.

Now first off, let’s get a little back story as to how and why I personally made the choice I did.

One of my chronic illnesses is very obvious.

Okay, so out of the hundreds of things wrong with my body, one of them is pretty apparent. Sue me.

For those of you who don’t know, I was born with bilateral club feet. While for the sake of time (and this argument) I’m not going to get into all the stuff it has done to my body, here’s the gist of it.

Since I had to have two corrective surgeries on my left leg as a baby, I grew up preferring my right leg over my left. This, in turn, stunted the growth on my left leg, which is about an inch or so shorter than my right. My left foot is also a size and a half smaller than my right (it makes shoe shopping an absolute nightmare) and the ankle is swollen and indented from the operations, something very visible when I wear flip flops or sandals or honestly anything that reveals my feet in any way (which, considering I’m a lifeguard, I do a lot).

The difference in leg length also leads to a bit of a limp (which my friend’s dad affectionally christened the “penguin wobble”) and my left leg never quite hits the floor right. 

Growing up in the early 2000s, I wore those iconic plastic sandals as a child which conveniently showed off my ankles. Since the deformity was then visible, I would get comments usually from parents (occasionally from their kids) about it. 

And when those sandals went out of style (thank God) I would get weird questions because of how I walked. There was one instance where I was dragged by a random teacher to the nurse’s office in junior high because she noticed I walked funny but thought I had injured myself in gym and that I was just in too much shock to feel it.

That was one interesting reality check.

When you have an obvious deformity, it’s kinda hard to not be open about it. But how open should you be to strangers that ask? That is another blog post that will be linked here when I get around to writing it.

But not all of my chronic illnesses are physical and quite so obvious, so why am I open about my experiences with those? And that’s where we actually get into my journey over the past couple of years.

More specifically, my health declined really rapidly freshman year of high school.

Granted, I should’ve seen this coming. For awhole year prior to that every time I ate lunch I would end up in the nurse’s office curled in on my stomach for the rest of the day. I ate so little that I’m pretty sure that besides genetics, my diet is part of why I’m such a tiny person (I stand at a mighty 5’0″ on a good day).

And then my health just kinda imploded one day in February of my freshman year.

I was at a speech tournament, and while I wasn’t feeling completely awful, I wasn’t feeling great either. I thought I was just coming down with a stomach bug (something that happened a lot to me at the time).

And then the pain hit the second I got off the bus back at my high school.

I’ll spare you the details, but a combination of an infection, high stress, bad medications, and doctor negligence, I ended up suffering and being diagnosed with my first GI condition along with MONTHS of chronic internal bleeding and recovery.

And then right when we thought we had caught the culprit, I started fainting.

And then my heart became an issue for a while.

And it seemed like I knocked over a never-ending trail of dominos that just kept falling faster and faster in succession. My whole life, everything I thought I knew, was falling apart at the seams.

And I tried to keep quiet about it for the most part.

Part of it was because my diagnosis was always changing. I went from having vasovagal syncope, to tachycardia, to POTS, back to syncope in a couple of months before I got my official and correct diagnosis. I didn’t know anything about what was going on, and that was really hard for people to understand, especially if they hadn’t gone through it themselves. People expect you to constantly know what’s going on with your body, and as a “spoonie”, that just wasn’t possible.

The other part of it was I feel the reason most people aren’t open about illness: people look at you differently

I grew up predominantly in a small town where you go to school with the same people for years. People who knew me growing up saw me as a young, spunky, independent person, but I knew the second they found out I was sick, that image would go away.

And here’s the thing:

“I am the same person before illness as I am after.”

Granted, I’m not exactly the same. Illness has changed me in so many ways. It has personally strengthened my faith in God. It has made me advocate for myself. It has humbled me. It has given me a tenacity I don’t think I would’ve discovered otherwise.

But I’m still sodium even when I’m a different isotope.

So with all this in consideration, why did I do it? I just gave fifty billion reasons why not to tell; what was the reason I did?

In an effort to protect the way people saw me, I had to compartmentalize all the good things that came with the illness: the ways it changed my character for the better.

Ironically, in an effort to free myself of persecution, I just ended up trapping myself even further.

And holy crap did I get tired of it.

Here’s the thing: I didn’t want my friends to leave and think of me differently, but by keeping my mouth shut about what I was going through, I let people in my life that were toxic; people who were only there for certain aspects of me, not all of me.

And I learned that that wasn’t the kind of people I wanted in my life. 

So I lost a lot of friends. But the friends I did keep are here for better and for worse.

But there’s even more than just that. 

If you’ve glanced at this blog you’ve noticed I’m all about breaking down stigma and the negative and often false stereotype around people with illness, but if you are tired of being impacted by the stigma, speak up.

The best combattant against stigma is knowledge. Most people aren’t trying to be malicious; this I can promise. Most people just don’t know better. By opening up and discussing what is going on, you put a name to the face; you humanize. It is easy to distance yourself when you’ve never encountered someone with an illness; it’s a lot harder when you know that illness or a person struggling with it.

And that’s the key to fighting that horrible stigma: to do the very thing that scares you.

Now that’s not saying that you have to be completely open 100% of the time. Things can stay private. You are free to pick and choose what you say and what you keep to yourself.

But while I have found so much hardship in being open, I have also found so much love and compassion from people I never knew.

So yes, I’m open. Hell, I’m blogging about it on a public platform, and if you read this and choose to still stay private, I completely and utterly back your decision; keeping quiet just wasn’t what was right for me.

I’m out of this chronic illness closet, and I don’t plan to go back in anytime soon.

“If you don’t like something, change it. If you can’t change it, change the way you think about it.” 

-Maya Angelou


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