Hey everyone. So, last February was the end of a very long winter for me. And facing similar struggles was my good friend Catherine Richardson. Catherine and I talk pretty much everyday, because, well, she’s an awesome sauce spoonie and always fun to talk to. We make jokes about our confusing bodies and share our constant poop struggles (true friendship, guys). We’ve never been in the same room, or even the same country, but when you can casually ask somebody, “How’s the poop coming?” that starts to become a lot less important.
I’m spending a lot of this post talking about poop, which actually has nothing to do with what I actually want to talk about. I could blame the brain fog here, but I think we all know by now I’m just a senile old woman stuck in a 25 year old body.
So one frustrated night, when I wasn’t able to get out of bed and Catherine wasn’t able to get any of the doctors appointments she desperately needed, we were honest. More honest than I’m usually willing to be with myself, much less the faceless internet or, even scarier, my loved ones. We had a conversation about the dark struggles of having a chronic illness, and what it feels like to have our pain so often dismissed because “we’re not dying.” Don’t get me wrong, terminal disease is a whole other bag of stress and pain that I am lucky to not have to deal with. But that phrase is so often used to dismiss the struggle and pain experienced by people who feel sick almost every day of their life. So we wrote a poem to put words to the struggle that hides underneath the mask of “not looking sick.” It didn’t go viral or anything, but we had a lot of feedback about the chord it struck with those who did read it. So we felt it was a story that should be told. And who better to tell it than the people who write about it regularly? So we gathered some of our chronic illness blogger buddies, and we made this video. To read a much more articulate summary of my feelings about this video, read Catherine’s post here.
We don’t look sick. But we are. Which means that the only way to understand us is to listen to us speak. So that’s what we’ve done. I encourage other people with chronic illness, or their loved ones, to share their stories as well in the comments of this post or the video! Or, better yet, write a post.
A heartfelt thanks to all the bloggers who contributed. This is no small task for someone who has to deal with sickness on top of normal life, so I’m just thrilled and grateful for everyone’s enthusiastic and willing hard work on this project. Below the video are the links and bios of all the fabulous people who made this project possible.
This is our #invisiblefight.
In order of appearance:
Catherine Richardson – Born and raised near Vancouver, Canada, Catherine is in her mid 20’s blogging and crocheting her way through all the unknowns of being a medical zebra and finding lots of opportunities to give her sense of humour some exercise along the way.
Blog, Facebook
Leah Holstein – A suburb-of-Philly native, Leah is a 25 year old tubie with gastroparesis and dysautonomia. She likes horses, Disney, and anything snarky.
Website, Twitter
Katie Brook – Living in Yorkshire, Northern England, Katie uses her love of writing to raise awareness about Myalgic Encephalopathy (ME/CFS) with the hopes of helping fellow sufferers feel a little less lonely along the way.
Blog, Twitter
Amanda Bryant – From Virginia Beach, Virginia, at 25 years old Amanda suffers from a severe form of the invisible illness gastroparesis. In spite of things that try to knock her down the daily, she is a newly-wed with an amazing 8-year-old stepdaughter. Her and her husband also own a business that does custom reclaimed pallet and barn wood furniture.
Instagram, Fundraising Page
Sarah Frison – Sarah is an integrative nutrition health coach from Belgium. As a result of living with gastroparesis, dysautonomia and gluten intolerance, she now uses her health coach and pastry chef training to share recipes, tips and tricks to help others live as well as possible despite their own dietary restrictions.
Nutrition Consulting Website, Twitter
Sarah Rush – From Vancouver, Canada, 21 year old Sarah lives with Ehlers-Danlos Syndrome and many other complications and conditions that come along with it. She is a psychology student who loves music, photography and any opportunity to raise awareness.
Facebook
Samantha Brink -I’m a book worm trying to make my mark in the non-profit world. Humor helps me battle back my anxiety and cope with a mish-mashed disorder, which I’ve come to understand as “slightly broken but I’ll never surrender.” Blogging allows me to unleash my quirky side and share some of the madness from balancing my medical needs with my career, grad work, and family.
Blog, Twitter
Stephanie Torres – While Kansas will always be home, Stephanie has lived in Washington State for the last 14 years with her husband and 2 fur babies (aka her “angels”). Diagnosed with gastroparesis and dysmotility in 2008, she had no idea how much her life would change. By 2011 she required a feeding tube and in 2013 had no choice but to start IV nutrition. Her dreams may need to be altered but she continues to look for the silver lining, hosting awareness events, working as an advocate for others on nutrition support, and making fun and laughter a priority.
Blog, Facebook
Lisa Tschetter – Living just outside of Vancouver, Canada, Lisa lives with POTS and gastroparesis. She has taken everything she has learned about coping with POTS and created a website to help others living with the same condition get a handle on their own symptoms. She loves playing the piano and has recently become hooked on crochet.
Blog
Chanel White – From Seattle, Washington, Chanel is living with a terminal diagnosis of systemic scleroderma and a whole host of other complications. However, despite the fact that she is dependent on a feeding tube, a central line and supplemental oxygen, Chanel focuses on living as fully as possible and acts as a voice for others with scleroderma and invisible illness through her writing and speaking engagements.
Blog, Instagram
Michaela Shelley – Michaela is your not so typical high school senior living in South Carolina. She is fighting Mitochondrial Disease, Dysautonomia(POTS), and Gastroparesis. Living with multiple chronic illnesses has changed her life dramatically but it’s made her see a different view in the world and for that she is very thankful.
Blog