As a young person living with a few rare and chronic disabilities, my natural instinct is to hide it as best I can and hope no one notices. Living with an invisible illness has its silver linings. For the past few years I’ve been experiencing the growing pains of communicating more intimately how my conditions affect me on the daily, especially with my close loved ones. It’s taken me my whole twenties to find a core group of friends that not only “get it” but actively support me in my advocacy, my increasing vulnerability, and making me more comfortable in asking for assistance when I need it. Throughout the years I’ve developed a dark sense of humour when talking about my illness. I really doubt I’m alone with that one. A slew of coping mechanisms to “fit in” this ableist society.
Let me tell you a bit about my new friend Rich…
He is a 31-year-old rare disease advocate with POTS, Hypermobile Ehlers Danlos Syndrome, Specific Antibody Deficiency and MBL Deficiency. He enjoys connecting with others in the POTS community and always has an ear for anyone in need. In his free time, he enjoys following his favourite sports and is an avid lifelong New York Yankees fan. His favourite place to be is at Yankee Stadium catching a ball game. Follow him @MyPOTSofView on Instagram and My Pots of View on Youtube.
Rich and I were connected through Our Odyssey. He was interested in sharing a blog post on our advocacy blogs. When I read his draft I was captivated by his way of creatively expressing what our thought patterns are like being young and chronically ill. I’m stoked to share it with you all!
Here’s Rich’s blog post:
I was first diagnosed with a rare disease at 19 years old—at an age where most people are quite frankly, young and reckless. An age where I, for one, didn’t quite “get it” just yet. I didn’t understand the significance of how it would affect my life. I would think:
“What's the sense in telling my friends? I’m young, and I’m invincible. Let me live my youth as I'm supposed to and everything will be just fine.”
Boy, was I wrong. I remember it like a movie reel in my head—like a conversation:
“Alright, well I guess these impairments and symptoms keep happening so maybe I should just try this medication that the doctor wants me to try. That should help everything, right?”
Wrong again.
Crap. I bargain, “but I'm in my early twenties. Everyone is out playing organized sports, working out intensely in the gyms, partying hard on the weekends, traveling from here to there, going to every event, operating on coffees, adderalls and less than ideal sleep and diet regimens. I should be able to do all these things too, no?”
“Nope.”
“Cool… Well I’m going to do all those things anyways (aside from the coffee and adderall) because I deserve to fit in.”
“You certainly do deserve to fit in—but at what cost?” I question myself.
“Huh, wait, who are you? And what do you mean?”
“Well, you have this chronic illness. If you try to keep up with your friends, you’re probably going to experience more burnouts and stress in your life; ultimately making things worse on you.”
“You’re right, I fail time and time again.”
“I know you too well now. Learn your body, less is more. You don’t have to be doing everything at all times. Do your friends even know what to do if you become symptomatic?” Another probe.
“Come to think of it, not really, no.”
“Why not?”
“I don’t know, I never really talk to them about my illnesses.”
“Don’t you think it's important that you don’t under-represent your illness? The less you put it out there, the less they will believe you. The more you put it out there, and take ownership of it, the more educated they become, and ultimately more likely to support you.”
As I take in those words of wisdom, “I never really thought of it like that… So, it's empowering to not only acknowledge your illnesses, but to take ownership of them?”
“Yes, and in doing so, you will ultimately worry less about “fitting in” and having any symptomatic episodes with your buddies, because they will all be well aware and know how to react if you’re not feeling well. Keeping them in the dark will only make the situation more stressful on everyone. Be open and honest about it so that you don’t have to live in fear. Trust me on this because I have lived this. And don’t be so down on yourself, kid. You’re doing the best you can,” the voice responds.
“Ok, cool. I'll take that advice. Thank you, but you never answered me—who are you?”
“Forget about me. Just be you; I am you. And for that, I love you.”
You can read his blog on the Our Odyssey website by clicking here.