To my fellow members of the chronic illness community,
As illustrated by our collective Twitter, Pinterest, Instagram and Facebook posts, an overwhelming amount of us devote considerable time each day to criticizing the healthy. We’re offended when our healthful counterparts don’t anticipate our needs, we’re insulted when they ask the wrong questions, we sneer when they aren’t well-versed in Spoon Theory, we’re scornful when they invite us to participate, and then after all that, we resent it when we feel left out. None of us are benefiting from this current communications approach.
In the first place, isn’t empathy that is mandated heading towards oxymoron-land? Empathy should be a kindness voluntarily extended over time, not obligatory platitudes resulting from the quotes we keep posting on Facebook. Let’s take a break from “TWELVE THINGS YOU SHOULD ALWAYS SAY TO A PERSON WITH CHRONIC ILLNESS” lists. (I’d like to know the success rate of such postings. Are your friends going in order down the list or are they free-styling? If they’re leaving in a hurry, can they comfort you Chinese takeout style and just shout “Oh right, #3 and #7! See you tomorrow!”)
We want someone’s compassion towards us to be genuine and of their own volition. I myself was elated the day my veterinarian called in the rest of the office staff to ooh and ahh over our new cat. It was definitely insinuated that this particular feline was their new favorite. When the same thing happened with my next cat, I was on Cloud Nine and logically concluded that I must be The Best Cat Adopter Ever. Well, eventually I found out that all new pets get the same amount of fuss; it’s like company policy or something. The cats took this revelation pretty well. I, however, was utterly crushed. Mandated affection just doesn’t feel as affectionate.
What’s most damaging about the negativity of these posts is not to our group image but to ourselves on a personal level. Maintaining an identity separate from that of “patient” and nourishing connections with people who aren’t sick can be challenging but it is vital if we want to thrive in spite of a chronic illness. Despite what we tell ourselves, continually posting these collective gripes is NOT healthy venting, it’s NOT social bonding, and it’s NOT raising awareness. It’s an “us versus them” mindset.
So I say, let’s resist Pinterest Pins featuring a lonely planet in a dark sky with the despondent message, Healthy people will never understand the burden of illness. When illness is isolating enough already, why throw down negative borders separating us further from the rest of the world? Jedi Knights bear a lonely burden, but they don’t go around the universe bellyache-ing about how no one understands them, now do they? (#iHeartRey)
Now before you start composing a nasty comment about what an insensitive traitor I am, let me be clear: I absolutely believe that as chronic illness survivors, we deserve the most level playing field possible, at work, at school, at home. To get this equity, we often have to speak up. But making oneself heard with a direct request (I will need a specific style of office chair please; Occasionally I may need an extension on term papers; Someone else better carry this #$&!ing laundry basket upstairs…) is wholly different than complaining passive aggressively on social media.
We survive the hell of chronic illness every day – we should show (not tell) people that we’re the toughest in society, not the whiniest. We may be trapped in these dysfunctional bodies but we shouldn’t be confining ourselves, socially and mentally, to resentful casualties. Like yours, my illness involves pain, exhaustion, embarrassment, and disappointment but I’ll be damned if I allow it to breed grudges when I could use it to generate strength, practicality, and thick skin.
AshleyJane K. Boots
Chronic Illness Comrade
AshleyJane K. Boots is living with the complications of Lupus and Fibromyalgia. She lives a colorful life in Concord, NH with her husband and his extra-ordinary teenage daughter. AshleyJane blogs at www.LivingIncurably.com