Ep 84: I’m a Mystery Patient, Now What?

Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?

 

In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis.

 

They discuss the emotional toll that comes with being a mystery patient, including the frustration, anxiety, and uncertainty that can linger for months or even years. We also explore the physical consequences of delayed diagnosis and the correct treatment.In addition, our co-hosts explore the importance of sharing our mystery patient stories to learn from one another, help ease the burden of being a mystery patient and provide support to others along the journey.

 

Whether you're a mystery patient or have had similar experiences, this episode sheds light on the lessons learned, triumphs, and struggles that many face and why your story matters. Share your story with us today at aiarthritis.org/mysterypatient and help us all learn more about AiArthritis diseases.

Episode Highlights: 

• What is a mystery patient?
• Kerry, Kelly and Tiffany share their own personal stories of their mystery patient journey and the impacts of a delayed diagnosis.
• The importance of sharing your diagnosis journey story so we can learn from each other and understand how to help others along in this process.
• The mental and physical toll that occurs with a delayed diagnosis 
• Is it ethical to treat Undifferentiated Diseases if it can be treated other ways?
• How sharing your story can help uncover the best questions to ask during your doctor visits

Our Co-Hosts:

 

• Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.

 

• Connect with Tiffany:
  • Facebook: @TiffanyAiArthritis
  • Twitter: @TiffWRobertson
  • LinkedIn: @TiffanyWestrichRobertson

 

• Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

 

• Connect with Kerry:
  •     Instagram: @buttahflyk 
  •     Twitter: @buttahflyk 
  •     Facebook: @floatlikeabuttahfly

 

• Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate.  She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32.  That diagnosis has changed more than 5 times over the past 18 years.  Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
• Connect with Kelly:
  • Facebook: @Lolabellaquin
  • Twitter: @Lolabellaquin

 

 

Donate to Support the Show: https://www.aiarthritis.org/donate 

 

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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!