Monday, August 22, 2016

What You Should Be (But Probably Aren't) Thinking About Invisible Illnesses

A few days ago, I was scrolling down Facebook when I saw it. At first glance, it was just another birthday announcement from a college acquaintance. As I read further down the post, though, the hairs on my arm started to stand up.

I had lived with this girl on my hall for one year. We hiked together to the farmer's market, she signed the "Welcome Back" poster on my door after I returned from being hospitalized and she constantly "mothered" me. Yet, even as she saw me whither away from celiac disease, she never mentioned that she battles her own invisible, chronic illness: systematic scleroderma. She never mentioned that it nearly killed her - as the excess collagen scleroderma causes can be fatal if left untreated - and how she still takes pills that allow her to look and act like a "normal" teenager. 



casey the college celiac

Now, my post today is not about when or why people reveal their battle with chronic illness. It's not about who has the right to know whose medical history, the power of empathy or even how social media can help people bond over their shared struggles. 

It's about what you should be thinking about invisible illnesses - but probably aren't

As someone with celiac disease and fibromyalgia, I sometimes get caught in the trap of feeling like I have a different - correction: better - perspective on invisible illnesses. I know what they can feel like, after all! But this Facebook post reminded me that having an invisible illness doesn't give me a "radar" for those experiencing similar medical difficulties. 

casey the college celiac
Can you pick out the girls with a chronic illness? Me neither!
In fact, when I see people who fit the healthy "mold" at first glance, I tend to assume - like every one else - that they're normal. A + B = C. The problem with that default thinking? Invisible illness can seem abnormal to the point of disbelief. Though I've been lucky enough to not experience this personally, I've read stories about people with fibromyalgia who have been told by family or even doctors that the pain "is all in their head." I've also offered support to celiacs whose family and friends refuse to accommodate their gluten free diet because "they look just fine." 

What if, instead of assuming the overweight man you see sitting on the front porch every day is lazy, you consider that he may have chronic fatigue syndrome and can barely get out of bed? What if that "skinny white chick" actually orders non-fat milk in her latte because she has IBS and too much fat leaves her sick for days? And, on the flip side, what if we stop associating "invisible illness" with negative traits and insurmountable limitations - because we can still kick ass even if our own body kicks its own
casey the college celiac
Amen to that! (Source)
What if we think about invisible illness as the "default" and give everyone an extra dose of understanding, space and empathy - since we may never know what struggles are hiding underneath their skin? 

Nearly every one in two Americans have a chronic illness and 96% of people with an illness have an invisible one. Unless you're the world's biggest social butterfly, you probably won't meet half of those 133 million Americans - or, even if you meet them (or are Facebook friends, in my case) know about their invisible illness.


casey the college celiac
Or, in this case, 2/2 Americans!
What does that mean for you? A few things. First, change the way you think about invisible illness. It isn't rare, it shouldn't as surprising as it often feels and "invisible" shouldn't mean "unworthy of attention, belief or value." Second? Just be kind. Give strangers, friends and even loved ones the benefit of the doubt. 

Because you never know when someone may be having a harder day than you ever imagined.



Have you ever been surprised by someone revealing an invisible illness? What thoughts do you believe should change about invisible illnesses? Tell me below!

*Also found at Best of the BlogosphereTotally Terrific TuesdayWine'd Down WednesdayLet's Get Real Friday PartyRunningwithSpoons and Wow Me Wednesday*

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4 comments:

  1. Oh, wow. I have my own invisible illnesses, but don't think about this often at all. I guess I don't think about how common these ailments are when classed together (as invisible), even though they're usually quite rare individually. This is really insightful, Casey!

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    1. Ellen, your comment made my day. Thanks so much for reading!

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  2. Great post. I have fibromyalgia, celiac among many other diseases...some invisible and some visible. Either way, people still make unkind judgments. Too bad people can't be more considerate as you suggest! You states this so well!

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    1. Thank you so much dear! I hope you are doing well and kicking butt at life. :)

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