Life with chronic illness has changed so much because of the internet. Between blogs, Facebook groups and hashtags, you can always find someone facing the same challenges as you and feeling the same jumble of emotions. It might sound really strange to a lot of you, but some of my closest friends I have never actually seen face to face. Many of them I don’t even know what their voices sound like! When you live out in the real world and are able to go to school, maintain a job and go out with friends, your friends live out in the real world with you. But when all of that slips away and you find yourself seeing your doctors more often than your peers, a lot of your friends start to live in your computer.
One of my favourite people in this world lives in my phone and my computer. Okay, she actually lives in Pennsylvania, but within the realm of our friendship, she lives in my phone and my computer. We’re less than a year apart, we’re in very similar health situations, we led very similar pre-sick lives and most importantly, we get each other. Normally, I would now show you a picture of us together, but we’ve never met! At least not yet.
Day to day, Leah and I crack a lot of jokes, use a lot of sarcasm, and share a lot of memes and cute polar bear videos to help us deal with everything, but we also help each other acknowledge and accept our situations. Earlier this year we were having a late night conversation about the realities of being young and living with chronic illness when Leah said, “Hey, we should turn this into a free verse poem,” and I said, “Okay!”
And then we decided to take it one step further. A few weeks ago I suggested that we re-share this piece for Invisible Illness Awareness Week, which, by the way, is happening right now. She said, “Yeah! Why don’t we make a video and see if we can get some other illness bloggers involved?” and once again I said, “Okay!”
Then, after a lot of emails and a lot of cooperation from a lot of awesome people, this happened.
When we first published this piece all those months ago, it was really intimidating! We usually try to keep things light. We tend to downplay how hard it can be. We like to end things on a positive note. But these words? These words are blunt. These words are stripped down. These words are real.
Keeping things light, finding the positive, and focusing on gratitude? That’s still real, too. It’s not all one or the other, and part of how we cope with our chronic conditions is acknowledging both sides. Since we can’t expect anyone else to understand that scarier side unless we talk about, that’s what we decided to do. We decided to share the faces and voices behind our words. And we decided to invite some of our friends and/or favourite chronic illness bloggers to help us.
A huge thank you to everyone who helped us out with this project! We know it was out of a lot of your comfort zones (it was out of our comfort zones, too!) but we so appreciate you taking the risk anyway.
And a huge thank you to all of you who took a few minutes to watch this video! You are giving us a voice and that is one of the most meaningful things you can do. That is one of the most important ways you can help us. We didn’t create this video for pity; we simply just want to be heard. So thank you for listening.
Before I go, meet the awesome ladies (in order of appearance) who put themselves out there and helped us make this happen!
Catherine…pretty sure you know where to find me!