Like anyone who differs from the majority, those of us living with chronic illness are exposed to preconceived notions, misguided advice, and my personal favorite...ignorant jokes. Do any of the following gems sound familiar?
"How can you have chronic illness? You're way too young for that!
"But you don't look sick..."
"You're walking just like my grandmother!"
"Looks like you better trade your body in for a new one."
By the way, I heard those last two from doctors. There are people who can easily dismiss this stuff, but unfortunately I was never one of them. Arthritis hurts, but words can be just as painful.
I was first hospitalized in 3rd grade, following a period of extreme joint pain and a variety of other symptoms. I was discharged with a PICC line (an intravenous catheter) so that a home nurse could administer ongoing treatments. Most of my classmates had never seen an IV before, so there was lots of staring and lots of questions. Of course it was all new and strange to me, so why would it be any different for my peers? But suddenly my disease was visible and I was no longer a "normal" eight year old. I was "sick"and everyone knew it.
I soon realized that it was just simpler to conceal my health problems. As it turns out, the constant questions weren't half as bad as the comments...and worse still were the jokes. When people asked questions, at least it usually meant that they cared to learn. Even at a young age, I knew that answering them could help spread awareness. Still, there is a huge difference between ignorant questions (see above for some examples) and those deriving from genuine interest. It's okay if you've never heard of Spondylitis - I hadn't either until my diagnosis. Just ask. I welcome and respect questions when they're coming from someone truly cares to learn.
There will always be people who "know it all"; people who offer misguided advice and make outlandish remarks, without ever understanding how their words could possibly hurt you. Despite having never been sick a day in their lives, they'll somehow understand your condition better than you do. My elementary school gym teacher, for example, once told me, "the best thing for you is exercise. Don't be a baby... just get up and walk it off." Others have insisted that they have the alternative and magic cure that will fix it all. For the most part, I know these suggestions are coming from a good place, but please remember that nothing about chronic illness will ever be that easy. If there was a quick fix, I would have tried it years ago.
And then there are the jokesters. Don't get me wrong - I love laughing - and to some extent, I need to maintain a sense of humor (particularly about my health). Without it, I truly think I'd go insane. But I prefer these jokes to come from people who are informed and care to know my entire story; people who take the ups with the downs. A guy I once dated chuckled and said, "It's like I'm dating a 16 year-old in a 70 year-old's body!" While his intentions weren't to hurt me, his words stung and made me feel alone. I've had many friends and acquaintances poke fun at the way I walk, how fragile my immune system is, and how many pills I take. I've been affectionately called "a medical train wreck", "granny" and anything in between. Because of this, it felt safer to makes jokes about my own health than to have others beat me to the punch. Throughout high school and college, nobody knew how deeply my health issues impacted me because I tried to laugh them off. I was protecting myself, but on the inside I felt desperately misunderstood.
In our society we're trained to lighten the mood, especially when things become too difficult or depressing. Let's face it - chronic illness isn't usually a great conversation starter. It's not "cool" or attractive, nor is it that easy to relate to. Often the reality of illness leaves people feeling sad, uncomfortable, and typically at a loss for words. So I've learned that these comments and jokes (no matter how tasteless) do serve a purpose. They have nothing to do with us and everything to do with the discomfort of the person saying them. For many they are defense mechanisms. Once I realized this, I became much less vulnerable, more secure, and able to explain my feelings to those who may have hurt me. After all, if a relationship is meant to last, it can and must withstand honesty.
It's important to remember that many people have never been exposed to illness and aren't sure how to relate to someone who is chronically ill. But to those people, I offer some advice: Even though I may look healthy, please remember that chronic illness is forever. My health is on my mind and close to my heart every day, so although you might consider your words harmless, I may not. Perhaps most importantly, try asking someone who lives with chronic illness one simple question: "How are you feeling?" Don't ask because it's the "right thing to do." Ask in order to listen; ask in order to learn.