How to Advocate as a Patient

Effie shares many anecdotes and nuggets of wisdom about how she’s learned to advocate for herself over fifteen years of living with rheumatoid arthritis. She also shares examples of finding a good fit with a provider, and how to get involved in legislative advocacy on a national scale.

Effie Koliopoulos is a freelance writer and rheumatoid arthritis patient advocate. She created her blog Rising Above Rheumatoid Arthritis in 2016, after being inspired to share her story more publicly and connect with others after undergoing a total knee replacement. Currently residing in Chicago, she is working on her debut children’s picture book, enjoys creating video content for her YouTube channel and other projects.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others develop tools to navigate physical, emotional and social challenges so that they can live a full life *despite* arthritis. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. 

Links discussed in this episode:

Effie’s BlogEffie’s InstagramEffie’s TwitterEffie’s Rising Above RA RAra Shop Designs (Merch): Effie’s Youtube Channel: RA and MyselfAdvocacy resources: Arthritis Foundation advocacy resources, American College of Rheumatology, ResistBot, WEGO health conferenceFree Handout: Cheryl’s Master Checklist for Managing RACheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportThis episode is brought to you by the Beginner's Guide to Life with Rheumatoid Arthritis (new name coming soon!), an intensive online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Detailed breakdown of show:

01:30 – Effie’s Diagnosis Story.03:30 – Effie’s advice for students with rheumatoid arthritis.06:06 – Examples of when Effie has had to advocate for herself and be actively involved in her care during medical appointments.08:40 – Examples of Effie advocating for her needs when prescription errors occurred. 13:15 - Effie’s experiences with getting second opinions and finding a good fit with a doctor.15:30 - General advice for patients to learn to advocate for themselves with medical professionals.17:14 - How Effie & Cheryl learned not to downplay symptoms, and how they confront fears around changing medications.21:00 – Effie’s advice for formal legislative advocacy at your state or national capitol, and why personal stories are so important.27:21 – How Effie has advocated for invisible illnesses, and Effie’s experience being accused of “faking” her disability (including someone calling the cops on her for using the disability placard).31:00 – What Effie wishes healthcare providers knew or did better.35:00 - The impotence of getting medical guidance from the doctor rather than the internet sometimes.36:05 – What Effie wishes the general public knew about rheumatoid arthritis.38:00 - Effie’s final words to anyone newly diagnosed: take advantage of the community.