Chronic Illness and Stigma

Stigma in Conversation #1: Assumptions

I was sitting with two of my very good friends at McDonalds the other day, and while we were pouring over our notes studying for an exam, I excused myself to the bathroom where I promptly threw up.

Disgusting, I know.

After I had cleaned myself up and returned to where we had been sitting, one of my friends looked up at me and he asked, “Did you just throw up?”.

“Yeah,” I responded, opening up my physics textbook to resume review.

He folded his arms across the table, concerned. “You should probably go home and rest.”

“Thanks for the concern, but trust me, I’m fine,” I responded politely.

“Throwing up isn’t okay,” he responded, frustrated. “It’s reasons like this that you get sick so often; you never take care of yourself.”

I get comments like this a lot, which is why I believe it is important to unpack this response.

Without realizing it, my friend made a few harmful assumptions.

1. He assumed that what is deemed not normal for him (vomiting) is not normal for me.

Vomiting sucks. It really does. And when most people throw up, it is because they are sick with something “new”, like a stomach bug or an infection. It is a clear indicator that there is something wrong.

The thing is when I vomit, it usually doesn’t mean much. I have a GI condition that periodically makes me throw up. My doctors are aware, and as long as I am keeping an appropriate amount of food down and I’m not throwing up multiple times a day, I’m doing completely fine.

My “normal” is not going to be the same as your “normal”, but that is not the reason I keep getting sick, which leads me to assumption number two.

2. He assumed that I didn’t take care of myself.

This is probably one of the most harmful things you can say to a “spoonie” because there is so much that happens behind-the-scenes so I can go out with you right now.

Let me walk you through the preparation necessary for me to go out with my friends.

I got the invitation during lunch the day before

For dinner that night, I made sure to avoid any foods that could potentially take longer to digest, so I had to eat light snacks the whole day and avoid dairy like the plague.

I knew I was going to be out the next day so I had to be sure I slept early enough that I would have the energy to surround myself with people.

I woke up the next morning and made sure I had a more-than-substantial breakfast so I had energy and then packed a substantial lunch so I wasn’t forced to eat anything too heavy when I went out, which my stomach wouldn’t appreciate.

I checked the temperature. It was about forty-five degrees, kinda chilly but not too cold for the average Midwesterner. That meant I had to make sure to wear warm pants to protect my joints from freezing up when I went out later that day.

As the school day went on, I made sure to check up on myself. Are you feeling okay? Are you tired? Do you have the energy to stay out for a significant amount of time? What’s your pain level? As the school day went on, I weighed those answers carefully. If I didn’t feel up to it, it was probably best to go home. Thankfully, by the end of the school day, I felt pretty good and deciding going out was still a good move.

After school, I made sure to leave anything particularly heavy that wasn’t necessary behind. Walking was hard enough; walking with a heavy backpack meant extra weight on my legs that I couldn’t afford. I also made sure to take a preemptive painkiller so that the imminent pain would be subdued.

Then came the walking. I knew I would have to walk from my high school to the McDonalds, which is about a quarter mile, not far for most people, but for me it was a trek. I made sure to wear clothes that weren’t going to restrict my legs as well as my shoes with custom orthotics to give me the support to walk the “long” distance. I also walked slowly, allowing my two friends to hang out and talk while I trailed behind. Keeping up with them wasn’t worth the pain that would follow.

Then the two of them decided they wanted to grab Starbucks before heading to McDonalds. A spontaneous decision like this was something their able-bodies could afford, but this change-of-plans made everything more difficult for me. The cold, despite my best efforts, was stiffening my joints and Starbucks would add another five minutes of walking.

We get to the coffee shop, and while they stand in line to order, I hand my cash to my other friend. She had known me for ten years and instantly knew that this walk took a lot out of me. I told her what to order for me (dairy-free of course) and I sat down as they ordered and waited for their drinks.

In those precious five minutes of relaxation, I did a self check-up again. Did I feel up to walking the five minutes back to McDonalds in the next few minutes? Or should I ask them if we can stay in Starbucks for a bit before we try that trek again?

If I walked to McDonalds right now, my legs had a good chance of potentially giving out, especially with the cold. However, if we decided to stay at Starbucks, the lactic acid that would accumulate in my legs from sitting in one position for too long could make my legs too stiff to move to the nearby fast-food place.

They finally got their drinks and I decided to get up and walk to McDonalds. Thankfully, I made it.

And this was all the planning that went into something as simple as going out to study with my friends, but it doesn’t go without saying: I take care of myself the best way I possibly can.

I take my medications.

I am consciously trying to eat better.

I stay active, participating in some sports such as swimming.

I am doing what I can with the body God has given me.

If for whatever reason my body was not agreeing with me, I was open to the idea of going home, and I constantly checked myself to stay in tune to with my body as much as possible.

I am doing what I can, and it isn’t fair to assume that just because you don’t actively “see” me caring for myself, it doesn’t mean it isn’t there.

I know my body best.

3. It is your fault that you are sick.

I know my friend super well, and I know that he never meant this to come across, but it kind of did anyways. He inadvertently blamed me for something I didn’t have control over.

This whole topic is honestly a separate blog post in and of itself, so when I get around to writing it, I will definitely link it, but here’s the short version.

No matter how well you take care of yourself, you’re going to get sick sometimes. Some of us have chronic illnesses and are just kinda sick all the time.

But it is never our fault.

Being sick sucks. There is so much I was able to do before my health tanked the way it did, and I live with the daily frustration that comes with not being able to do what I used to. We “spoonies” work really hard to stay as healthy as possible, but sometimes, despite our best efforts, it doesn’t quite work that way.

My “healthy” can seem or even be like your “sick”, but that doesn’t mean I don’t take care of myself, and that sure as hell doesn’t mean it’s my fault.

Now back to my friend.

After he had said that, I had a few options.

I could punch him in the face.

I could open this can of worms.

Or I could bite my tongue.

In the end, I ended up politely opening the can of worms. He didn’t realize the words he said and how harmful they were, and he definitely apologized, but this just goes to show the stigma that surrounds the chronic illness community.

I hope that perhaps by talking about it, we can shatter some of these stereotypes and create a more sympathetic world.

“The goal is to work toward a world where expectations are not set by the stereotypes that hold us back, but by our personal passion, talents and interests.”
-Sheryl Sandberg

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