The Faces of Invisible Illness: An Awareness Plea
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- Опубліковано 1 жов 2015
- A few months ago Leah from spoonshares.com and Catherine from findingmymiracle.com had a late night conversation about the realities of chronic illness. That conversation turned into a poem, and now that poem has turned into a video involving many chronic illness bloggers. The goal of this video isn't self-pity, we simply want people to hear us. Because so often the struggles of the chronically ill are, well, invisible.
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.
findingmymiracle.com
/ findingmymiracle
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. spoonshares.com, / spoonshares
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.
www.katiebrook.com/, / katiebr00k
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.
/ a_jbryant , ccf.convio.net/site/TR/DIY/CCF...
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.
www.sarahfrison.com/, / sarahfrisonhc
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.
/ timeline
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.
keepstride.wordpress.com/, / keepstride
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.
mygastroparesisjourney.blogspo..., / timeline
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.
lifewithpots.weebly.com/
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.
thetubefedwife.blogspot.ca/p/w..., / thetubefedwife
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.
chronicallyawesome23.blogspot.com
Link to the original poem posted on Spoon Shares on 2/24/15: spoonshares.com/2015/02/invisi...
you made me cry because I know how everyone of you feel. thank you
Thanks for the video, just discovered your blog, hope you keep writing
Thank u SOOO much for putting our daily struggle with chronic pain in words. 🤗I can't even get out of bed in the morning before the pain starts. 😣It is the frustrating how no one "really" understands unless it you yourself😑. Not even those who are trying their hardest to support and help u on this journey- it really does make u feel like a liability .😔 This is definitely NOT living.
Great video for awareness. Thank you for making this! :)
+Chronically Hopeful Thank you for watching!
Thank you for this video! ♥️ Needed to hear from other spoonies about their lives. We're not alone ♥️
That was fantastically!!!
I always say "I'm not living, I'm just existing."
Yes to everything here! I'd love to be involved in a video if I could be. I was born with a heart/lung defect TAPVR type 3. 1 working lung. asthma. RA. TMJ. autoimmune issues and a low immune system.
Cool video girls
Something I've noticed is that women get hit with more acute symptoms of various immune deficencies, and other chronic diseases. It would be interesting to see if there is a statistical skew between female and male population groups.
Personally, I have Celiac Disease, but my symptoms were more classic in nature compared to what I've seen with female Celiacs. Of course I'm waiting for the next autoimmune shoe to drop, but hopefully it won't be too serious.