Thursday, June 16, 2011

Some Thoughts On Thoughtlessness

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.


  1. What a well written post! It took me a long time to realize that a lot of these comments said more about the person saying them than about me, but sometimes it's hard to not take them personally. My case is particularly interesting, as I currently reside in a culture that is foreign to mine, where the norm is quite often at the other extreme, i.e. too many questions and too many suggestions. All with the intent of being helpful, of course...but there not always received that way.

  2. Maya,
    This is so beautiful. I know we've all felt it - the way others who don't understand see us differently. It hurts - many times more than the disease. There are none of us living with a chronic illness who haven't felt these things. What it unfortunately does is keep us silent about our struggles - I hid my disease for years because not only did I not want to experience the criticisms but I did not have the physical strength to combat more than just surviving. Thank you for what you write - I'm always moved by your words.

  3. as always, your words resonate with me. this post could not have come at a better time. just yesterday i had a resident come into the exam room with a shocked look on his face. he read my medical record but didn't take note of my date of birth. so when he came into the room with shock on his face, he proceeded to tell me that he was expecting a much older patient and inquired if i was indeed mrs betsy baker. i confirmed that i was indeed mrs betsy baker and he then apologized not for saying that he expected a much older patient, but because i am just too young to have the medical problems of someone in their 70s and he cannot believe that i now have cataracts in both eyes. thankfully my amazing consultant came in at that time and treated me with the respect and empathy i deserve. i hope it was a learning moment for that resident. xo

  4. Maya, I am currently writing a post about the same thing! How funny.

    The other day a friend of mine heard about this new powder at the health food store that is intended for arthritis. After telling me about it, she asked, "Are you going to try going off your meds again and take this supplement?" I was so frustrated that she would assume that because it said "arthritis" on the packaging and was found in a health food store that it would magically do the trick. I would like to say I didn't roll my eyes right in front of her, but that would be a lie. When I hear suggestions like this that seem so easy, I feel like my friends don't understand any of the steps I have taken to feel good.

  5. Absolutely! I've recently received a 2nd chronic pain diagnosis of Fibromyalgia and more than 1/2 of the people I've told have said "oh well that's just what they say when they don't know what's wrong with you." AH!!!! sigh

  6. AnonymousJune 19, 2011

    So well said ! Great post. I know some people wants to help when they say "I heard of this med/doctor/technique" but it's so frustrating at the same time. there is no magic pills for us.

  7. I hate it when strangers ask me "what happened to you?" as if it isn't completely rude and invasive and none of their business! Simply because I have an illness that requires me to wear leg braces and use a walker at the age of 39 doesn't mean I have to tell you all about it. I always think that the next time someone asks me I will have a sarcastic or witty response but honestly every time I am so taken aback that I can barely speak. All I can do is wonder what the hell is wrong with people!