In this episode we are joined by Jae Walker, who lives with multiple autoimmune diseases including rheumatoid arthritis, fibromyalgia, and a rare neurological disease. Jae shares their emotional journey to diagnosis, offering advice for other people living with chronic illness on advocating for yourself and not giving up.

Among the highlights in this episode:

01:21: Jae shares the onset of their rheumatoid arthritis symptoms, detailing the progression of the symptoms, the challenges of everyday activities, and the breaking point that led them to seek medical help

04:25: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, highlights the common reluctance among patients to acknowledge the severity of their symptoms

04:36: Jae discusses their path to diagnosis from initial denial and misinterpretation of symptoms to the pivotal role of their primary care provider (PCP) in suspecting rheumatoid arthritis despite inconclusive tests

07:58: Zoe and Jae discuss the critical role of specialized testing in Jae's diagnosis, including Jae’s journey through rheumatology, the use of MRI, and the relief and realization brought by visual confirmation of inflammation

09:25: Jae discusses the emotional and physical toll of rheumatoid arthritis, touching on the impact of receiving a long-term diagnosis, the initial struggle with acceptance, and the subsequent panic and overwhelm

11:28: Jae talks about the importance of community and self-expression as they find solace and connection through online communities, blogging, and art, navigating the isolation and misunderstanding surrounding chronic illness

16:33: Jae addresses the challenge of additional diagnoses over the years, from fibromyalgia to small fiber polyneuropathy, and the importance of persisting in the search for answers despite medical skepticism

18:01: Jae shares their experience with small fiber polyneuropathy, including the struggle for recognition of their symptoms, the complexity of overlapping conditions, and the eventual diagnosis that connected disparate symptoms

25:44: Jae emphasizes the importance of documentation, advocating for oneself, and the power of having just one person who believes in your experience

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org

Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org

A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

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