We also asked about the first word that came to mind the day of diagnosis. Every participant had a vivid recollection of that day, and remembered the frustration, fear and, in some cases, relief:
#chronictogether A5 these numbers tell me that we are 1third of the population. And could be very powerful United as a lobby group.— Chronic Pain (@chronicpainwar) October 30, 2017
All chronic patients have dealt with discrimination in one form or another...
A3 relief and anxiety over finally having a name for my condition but worried over lack of real treatments #ChronicTogether— Katarina (@annakatarinaz) October 30, 2017
...or have experienced difficulty with communicating with doctors about their disease:
A4 I recently won a lengthy fight with Aetna after they tried to (retroactively) deny four months of physical therapy #ChronicTogether— Susan (@trashspoonie) October 30, 2017
We were shocked by the price of @Walk_With_Adam’s drug costs, especially what it would mean if his payments were rejected for accepting charitable premium assistance:
A8. Kinda? I've had doctors tell me it's all in my head, though that's pretty normal for an #invisibleillness. #chronictogether— Susan (@trashspoonie) October 30, 2017
And hope he can continue to utilize charitable premium assistance to make sure he receives the critical care needed to fight his disease:
My infusion drug costs over $1,000,000 a year. I have been lucky so far with coverage, but no idea how it will go now. #ChronicTogether— Adam Meyer (@Walk_With_Adam) October 30, 2017
And while fighting a chronic disease is frustrating, difficult and demanding, we wanted to end on a positive note and are continually inspired by all of our #chronicfighters:
I currently get premium assistance and it makes a huge difference! My entire monthly premium is covered right now. #ChronicTogether— Adam Meyer (@Walk_With_Adam) October 30, 2017
I discovered how strong I am, talents I didn't realize I had, and that life is what I make it ❤ #chronictogether— The Disabled Diva (@TheDisabledDiva) October 30, 2017
Hearing from patients and patient advocates is critical to CDC's role in ensuring every voice is heard. Join us to see how you can help make sure chronic patients are heard.
A9: I am attuned to other people’s suffering. I am more thankful. I care less about unimportant things #ChronicTogether— Jay Wilburn (@AmongTheZombies) October 30, 2017