“What I like best about speaking and writing is that it allows me to gain control over my story. For so many years, my disease forced me to be reactive, but now I’m the one on the offensive. I’m the one who gets to interpret my experience, form it into a narrative, and repackage it for the wider world.” Perfectly said. Always grateful for your writing and for sharing your story.
Chris, your story of living with a chronic, debilitating illness, finding ways to overcome and thrive, and becoming an advocate for others is really inspiring. As a parent of a kid with chronic illness, this gives me hope today. Thank you!
I worked for years in the community/health sector, supporting people living with life-changing diagnoses. Your words would give many of them the strength and courage they need - especially about not trying to face things alone.
I was musing in general terms about the number of people impacted by rare (and not so rare) but unexpected diseases. I'm in Australia, where the national peak body is Rare Voices Australia - a great organisation doing some excellent work. www.rarevoices.org.au
“What I like best about speaking and writing is that it allows me to gain control over my story. For so many years, my disease forced me to be reactive, but now I’m the one on the offensive. I’m the one who gets to interpret my experience, form it into a narrative, and repackage it for the wider world.” Perfectly said. Always grateful for your writing and for sharing your story.
Thanks Jackie!
Chris, your story of living with a chronic, debilitating illness, finding ways to overcome and thrive, and becoming an advocate for others is really inspiring. As a parent of a kid with chronic illness, this gives me hope today. Thank you!
Thank you! This means so much.
Wow Chris. Thank you for telling your story so beautifully.
Thanks Vivienne!
Thanks for sharing. I can see myself in the early parts of your journey and I hope I can learn from how you have handled this.
Thanks David! Let me know if you have any questions or anything I can help with.
I worked for years in the community/health sector, supporting people living with life-changing diagnoses. Your words would give many of them the strength and courage they need - especially about not trying to face things alone.
Thanks Jan! I am always looking to reach new audiences - out of curiosity, are there any particular organizations I should reach out to?
Hi Chris
I was musing in general terms about the number of people impacted by rare (and not so rare) but unexpected diseases. I'm in Australia, where the national peak body is Rare Voices Australia - a great organisation doing some excellent work. www.rarevoices.org.au
Thanks Jan! Thank you for sharing that link. I'll check it out!
Chris, Thanks for sharing all the stages of your story. I know it will help others!
Thanks Sandra!
This is just beautify written.
So inspiring for anyone who is struggling. For anyone who needs help. People are there for you.
If you get 5 spare minutes in the next day or so. Read this post from Chris.
Thanks Martin! really appreciate it
Chris, you are amazing.
Thanks John! You're amazing too.
Beautiful, Chris. Thank you for being such a wonderful advocate, and a mighty fine friend. xo
Thanks Sandra!