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#InvisibleIllnessWeek Is Over -- What Happens Now?

Health is merely a spectrum under which all of us fall into in one place or another, and this is especially true when you think of invisible autoimmune conditions which are very much part of you yet pose a number of problems.
10/02/2015 04:16pm ET | Updated December 6, 2017
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Social media has been taken over by #InvisibleIllnessWeek. Almost everyone has seen a tweet there or a status update here referring to it, and as awesome as it has been in generating interest in a topic that doesn't often surface in everyday media, the conversations it has given rise to deviate into two extremes: either showcasing the horrible aspects of living with a chronic diagnosis or an all-encompassing positivity celebrating invisible illnesses.

First of all, what IS an invisible illness? It's a diagnosis that often doesn't show itself on the surface, most of them are autoimmune conditions such as Lyme disease, Crohn's disease, etc. The reason they are so hard to track and represent is because they are so dispersed despite affecting literally millions of people around the world. Also, they highly vary in how they materialize and take effect within each of our bodies. I should know as someone who has three different invisible conditions that I have lived with for a lifetime now: asthma that led to losing one of my lungs, Crohn's disease leaving me with just one small intestine after several surgeries, and sacroillitis as another symptom of IBD.

#InvisibleIllnessWeek might almost be over but with it affecting millions around the world, it's just another week for most of us. Amongst all of our voices, why are we still sticking to extreme points of view when it comes to health?

A few things to reflect upon if you have one such condition or know someone who does:

  1. Complain vs. Praise: This probably extends beyond just #InvisibleIllnessWeek, but the Internet unleashed complainers that was lying deep within all of us. Surely, if we held actual conversations to the same degree as we complain on Twitter or Facebook none of us would have any friends. The other side of the coin is to blindly praise someone living with an invisible condition, it often falls into the category of "detrimental empathy" when someone says, "oh you're doing well despite all the things you're going through." Neither of those are helpful nor demonstrate how someone with a chronic condition could consistently live a fulfilling life.

  • Normal vs. Supernormal
    No one likes being a freak, and when you are a freak, you want to be the freak that everyone admires. Especially if you have a chronic condition that keeps you from doing all the normal things that everyone else can, it's easy to feel like a freak that no one cares about. The alternative however, is everyone seeking approval to be better than normal; supernormal. Like the one-legged marathon runner or climbing Mount Everest with MS. There's nothing wrong with finding what truly makes you happy and write your own story, stories inspire better stories and the most amazing ones are always the ones which haven't been written yet.
  • (A while ago I wrote about why I will never be normal and make a case for Going Beyond the Extraordinary in this blog.)

  • Illness vs. Condition
    There is something fundamentally constraining when we use the term illness. When it first surfaced in the English language around mid-15th century it's literal translation was it is bad to me, which immediately makes you the passive recipient of whatever the disease wants to do to you. Disease on the other hand comes from Old French desaise that meant "lack of or discomfort" so neither of these words are kind to us.
  • Health is merely a spectrum under which all of us fall into in one place or another, and this is especially true when you think of invisible autoimmune conditions which are very much part of you yet pose a number of problems. As someone with severe lung issues, it's just something I have taken for granted of not being able to climb up flights of stairs at a stretch but I don't have hay fever and find that it's incredibly discomforting and unhealthy to constantly be sneezing for summer months. Who's healthy and who isn't from this perspective? The world illness or disease brings with innumerable negative connotations invariably leading to social implications. If health is a spectrum, all of us fall into one slot or another within our own conditions so why bring yourself down imagining you're doomed with an illness for the rest of your life?

    Kudos to #InvisibleIllnessWeek and for everyone who participated in it, but let's not just celebrate it for a week rather create a culture that allows us to embrace it for life.

    The author is a writer & speaker on social tech and living with chronic conditions. She is also the Founder of Chronically Driven; a platform to share real stories by real people on ways a chronic diagnosis transformed their lives for the better. Join Chronically Driven's Facebook Community and Chronically Driven Letters she handcrafts every week to bring inspirational content straight into your inbox!