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!
Finding my Miracle 
I meant “some are mental, some are physical and some are environmental.
You are very lucky to have had the level of education which you obviously do. Though my struggles have been different than yours, I.have had my share of invisible illnesses too. Some are mental, some are oh and some are environmental. Early on I realised that dying is not an illness but a fact of life. Think about it. Every person born is greeted with a death sentence. The moment we are born is the moment we begin to die. Illnesses come with living. They are not a gift but a condition of being alive. It is remarkable to realize that everyone I know has an illness which sometimes only is observed by others and of which they are completely unaware. I am older and retired and have been granted the illnesses that come with age. But I would like you to understand that in my own way, I am not any older mentally than you are and the death sentence is the price of life. Peace Out.
Hi Linda – thanks for commenting! You make a lot of good points, and while I do think that there are some really big differences between being chronically ill when young and acquiring illnesses of age later on in life, I also agree with some of your points, too. Thanks for sharing your thoughts!
Holy cow. Thank you so much for posting this. It made me cry because I was so relieved that somebody else got it. Y’all explained what I have so much trouble trying to explain to other people.
This could not have been put together any better than that. I personally want to thank you, because it is so true for me as well. I think that sometimes being blunt & honest about the real deal helps others to understand a little of what we battle daily. I am notorious at down playing my illnesses. It is so hard being young adults & our bodies are acting like we are much older. I also think that Invisible Illnesses Awareness Week should be a month long, & not just a week to spread the word of Invisible Illnesses Week Awareness.
Thank you all so much for your encouragement and support!!
Absolutely beautiful. All of you are! and all of your words too!! Thank you. So very proud of you guys. Very well done. Very well said. xoxo
Well done! Amazing women!
Such beauty! Your words were so well spoken.
This video was so moving and I can totally relate to all of you. I have gone through breast cancer, scleroderma, skin cancer and now I have Pulmonary Hypertension. How much can a body take? But my friends say “You look pretty good – you don’t look sick”. But I am!
I want to live, but my body’s poor immune system is not letting me be the free spirit I want to be.
Thank you for the raw emotion, you literally brought me to tears of compassion and empathy and self-awareness.
Wow, Liz, that is more than one person should have to handle! Hugs to you as your strong spirit battles your body’s stubborn immune system.
The poem and video are wonderful and so on-target. Thank you so much.
Wow.
Thank you.
So incredibly honest.
Amazing women, all of you.