We provide steps and downloadable tools to manage your chronic illness - organize your records, supplies, calendars, even logs to give data to your doctors.
On March 6th Patients Rising held a live conversation on the topic of managing your chronic illness. We did this because we know what it’s like trying to juggle life once you have a chronic diagnosis. Cancer, diabetes, rheumatoid arthritis – there are so many diseases that change the way you have to live your daily life. We knew that people needed help managing, because you told us.
If you want to see the entire conversation we had or access the unique tools we created to help, visit https://patientsrisingu.org/managing-chronic-illness-a-guide-to-organizing-your-care/.
You’ll find links to the recorded conversation, other resources from our panelists as well as downloadable forms you can use to keep track of things like:
You’ll even find our Insurance Primer which includes the basics to begin understanding insurance, how it works, when and how to get it and what to do when it goes wrong.
We were joined by Debbie Bitticks, an expert in recording people’s life stories and founder of the Cancer Concierge. Cancer Concierge helps people organize their care. She provided experience, practical insights, and even links to resources, like her “Capturing Life Stories” workbook. Having Debbie there made it feel like a conversation around the kitchen table.
We were also joined by Carolanne Monteleone, a patient on Total Parenteral Nutrition (aka a “tubie”). Carolanne also happens to be the sole proprietor of Crafting For a Cure Co, which makes accessories for tubies. Carolanne offered practical ideas from her extensive personal experience.
We rounded out the panel of experts with Whitney Morrison of Legalzoom. Whitney offered many vital tips for managing your money when chronic illness invades life.
The panel was moderated by the president of Patients Rising, Terry Wilcox. Terry has many years of experience in advocacy and health policies. She speaks truth to power about healthcare. Terry founded Patients Rising back in 2015 with her husband and since then Terry’s been making sure patients stay at the front of all healthcare discussions.
Take away = this conversation was practical.
I hope you’ll go and take advantage of this useful guide. Managing a chronic illness is hard. These tools and recordings will help. Please pass it on to others who you think it could help. Lastly, please keep letting us know what you need and we’ll keep doing our best to give it to you.
As the Director of Patient Content at Patients Rising, Jim works very closely with the people who have healthcare war stories to tell. As a Columbia University trained writing consultant Jim has worked closely with writers of all levels of skill to help them find and refine their voices. He is a writer, editor, author and medical assistant. Jim has done hands-on nursing and education at some of New York’s biggest health institutions where he advocated for rare disease patients. He has worked with several non-profit patient support organizations doing outreach, advocacy and creating educational content. He lives in New York City with his wife and their cats.