Spoonie Program
Terms to Know:
Spoonie: Someone with chronic pain/illness, joining the Spoonie Program to get partnered with a supporter to get guidance in navigating all things chronic and medical.
Supporter: a highly trained intern or volunteer who partners with a Spoonie to help them navigate through the world of chronic pain/illness
What is the Spoonie Program?
We partner a Supporter with a Spoonie for one-on-one support via meetings through zoom to assist and guide the Spoonie in all things chronic and medical.
A lot of people with chronic pain/illness get thrown into the medical and chronic world suddenly and unexpectedly. Now, they have to navigate doctors, learn to advocate for themselves, figure out medications, become experts in health insurance, and make millions of little adjustments to their lives, all while feeling awful. We are here to help!
Whether you are a new Spoonie or have been dealing with pain/illness for decades, we are here to support you and help you advocate for yourself and navigate the complicated and ever-changing world of chronic conditions and medicine.
Examples of Support Given:
Weekly (or how often is convenient for the Spoonie and Supporter) meetings via zoom
Brainstorming goals for appointments
Help organize medications and other medical devices
Help organize and navigate all things chronic pain/illness (making flare boxes, organizing braces, discussing mobility aids etc)
Help to prepare for doctor appointments (making goals, preparing questions, role-playing to gain confidence, etc.)
Discussing how to find and manage support (when to ask friends/family for help, managing guilt around asking for support)
Learning to own your chronic pain/illness pain story (how much should you share with a new friend? etc)
Learning and practicing how to advocate for yourself in appointments and in life
Help talking through decisions
Help managing the chaos and schedule of being chronically ill or dealing with chronic pain
