Blog Post: Invisible Illness Awareness

Yesterday marked the end of Invisible Illness Awareness Week. Never heard of it? Don’t feel bad. Much like the illnesses it seeks to illuminate, IIAW goes unheard of more often than not. You see, it’s easy to ignore something if you don’t know it’s there. And even if you do know it’s there, it’s still easy to ignore it if you aren’t visually confronted by it. After all, “out of sight out of mind” is a cliché for a reason. We as a society cannot ignore the illnesses that shout in our face and demand to be heard. We see paraplegia. We see cerebral palsy. We see Down syndrome. We even see cancer in one way or another. But with the illnesses you can’t see come the stories you haven’t heard. The pain, suffering, and survival are just as real, but how would you ever know that?

It’s been nine years since I was diagnosed and eleven years since I started realizing that I was different – that something was “wrong” with me. But it’s only been about five years since I came to terms with my chronic illness and chose to celebrate what’s “wrong” with me instead of hiding from it in shame. Sick folks can only live a lie for so long before the exhaustion of hiding is almost as much of a burden as the exhaustion of illness.

Right before I found Delta Xi Phi I found The Spoon Theory by Christine Miserandino, and with that I also found my identity as a spoonie and an online community of people living with illnesses from A to Z. Finally, I not only had friends who knew what it was like to be sick in their 20s, but I also found a way to explain life with a chronic illness to healthy people. So I took a leap of faith in trusting my newfound sisterhood, and I used The Spoon Theory as a tool to expose what had previously been my deepest, darkest secret: I am chronically ill. I live with a slew of diagnoses that I will continue to live with for the rest of my life. And while I have plenty of good days to hold on to when things get rough, there is never a day where I’m not affected by my illness.

It should go without saying that my sisters embraced my illness and me, but I’ll say it anyway. Delta Xi Phi gave me so much more than a safe space to discuss my medical woes. It gave me sisters who went grocery shopping for me when I was too sick to get out of bed and hadn’t eaten in days. It gave me sisters who called my mom and asked for help when efforts to lift me out of depression failed. It gave me sisters who cried with me in moments of helplessness and rejoiced with me in moments of victory. Delta Xi Phi has given me hope that not all of my friendships will crash and burn under the weight of illness.

But not all spoonies have Delta Xi Phi. A life with chronic illness is in many ways a lonely life. The social side effects weigh on your relationships and make you an easy target for fast judgment. When someone misses a lot of class it’s easy to assume they’re being lazy and skipping, but what if they’re not? When it seems like someone’s not doing as much as you are it’s easy to call them a slacker and to feel superior, but what if they’re actually working even harder under the pressure of failing health? When someone cancels plans with you at the last second it seems perfectly reasonable to get upset and write them off, but what if they’re just too afraid to tell you they’re suffering?

You may not have known that last week was Invisible Illness Awareness Week, but don’t let that stop you from being aware now. Second guess your judgments of those you don’t truly know. You may be surprised at how many people around you are battling their own bodies.

Invisible illnesses are very real – and remember, just because you can’t see it doesn’t mean it isn’t there.

Written by: Jillian Hayes, National Secretary and Alumna of the Rho Chapter at the University of New Hampshire

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