I'm a Mystery Patient, Now What?

AiArthritis Voices 360 Main, Full Episode 84

Air Date: April 2, 2023


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 by clicking the button below or visiting 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


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!

Who is at the table?

Tiffany Westrich Robertson, CEO of AiArthritis and person living with non-radiographic axial spondyloarthritis,

Kerry Wong, Float Like a Buttahfly and person living with sarcoidosis, &

Kelly Conway, speech pathologist and person living with autoimmune arthritis

All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode (Step 6 in our organization's 6-step process), where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).


After each show airs we  spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!

 

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!

And now, let's 360it!

The main Sunday episode is where we "put the topic on the table," but it's not where the conversation ends!  Now we spin off the conversation into different discussion segments. Below you will find several 360its. Some are videos from the main episode, while others are audiograms (soundbites).


Soon we will be launching additional 360its, which will build on these conversations. We'll hear from patients in the United States, Canada, and Australia who are here to help you through the transition to biosimilars. We are also planning a WATCH PARTY, where we will play back segments of webinars that aim to teach you more about biosimilars - and you'll have your fellow patients at AiArthritis to talk through it all with you!  Stay tuned.

SHORT VIDEO CLIPS FROM THE MAIN EPISODE

360it Short Video #1

What You Need to Know if You Are a Mystery Patient

As a mystery patient, finding answers and support for your condition can be a daunting and isolating experience. But you don't have to go through it alone. Kelly and Kerry share their personal stories in this video, shedding light on the difficulties they faced and the solutions that helped them overcome their struggles. From documenting symptoms to finding the right doctors and support systems, they offer practical advice for anyone on a similar journey.

360it Short Video #2

Effects of Being a Mystery Patient

Being a mystery patient with a delayed diagnosis of an AiArthritis disease can have significant physical and mental effects. Patients may experience chronic pain, fatigue, and mobility issues, making it challenging to complete daily tasks and maintain a normal lifestyle. The lack of a diagnosis and treatment plan can also lead to emotional distress, anxiety, and depression, as patients feel lost and unsupported.

360it Short Video #3

What is a Mystery Patient?

Are you struggling to get a diagnosis for your AiArthritis disease? You are not alone. Many people with these diseases face the challenge of being a "mystery patient." This means that their symptoms do not fit neatly into a diagnostic box, and it can take months or even years to get a proper diagnosis.

360it Short Video #4

Patients Have a Voice in their Doctor Choice

Finding the right doctor is crucial when it comes to managing an AiArthritis disease. Patients should never feel hesitant about leaving a doctor who isn't serving them. This can be difficult as it is important to build a relationship with your doctor, but it's equally important to find a doctor who understands your unique situation and is willing to work with you to develop a personalized treatment plan.

SHORT AUDIOGRAMS FROM THE MAIN EPISODE

360it #1

We Can Learn From Each Other's Stories

Sharing patient stories creates community, sheds light on rare conditions, and inspires others to speak out. Let's break the silence and pave the way towards better understanding and improved treatments.

360it #2

Why Should You Document Your Symptoms?

Documenting your symptoms is key during your journey towards a diagnosis such as taking pictures or tracking your fever and exhaustion. By doing so you may even be able to get towards a diagnosis sooner! 

360it #3

Therapy is an Important Part of Treatment

Living with an AiArthritis disease is a life-changing experience that affects not only your body but also your mental health. Therapy is a useful and impactful tool that can help handling your struggles. 

360it #4

You Are Not Alone in Your Diagnosis Journey

Dealing with AiArthritis can make you feel lost and alone, but sharing your story can make all the difference. But remember, you're not alone and sharing can build a community for help and support.

360it #5

Don't Be Fooled by Negative Bloodwork

So many patients have been told they're fine, even when they know something is wrong. Don't give up on advocating for your health and seeking the right diagnosis. Find a doctor who makes you feel heard. 

Your Co-Hosts & Guests: Who is at the table this episode?

Tiffany Westrich-Robertson

Tiffany is the CEO at the 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. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 


Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.


Kerry Wong

After too many years with doctors who either didn't believe her or couldn't figure things out, Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. Her primary goals are to help other chronic illness warriors know they are not alone in their experience and to help those who care about these warriors to get a better understanding of what that experience entails. Kerry currently volunteers as New York State Advocacy Chair and Platinum Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. She has also advocated with the American College of Rheumatology, Support Fibromyalgia Network, and Rare Disease Legislative Advocates, and assisted on numerous projects with International Foundation for Autoimmune & Autoinflammatory Arthritis. . Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities. She has shared her patient experience in speaking engagements across the country and virtually, and hosts a monthly sarcoidosis Twitter Chat (#SarcChat). Most recently, she has become a columnist with Sarcoidosis News, sharing her experience and insights, inviting others to Float Like a Buttahfly with her.


Kelly Conway

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.  She has represented her state of Pennsylvania on Capitol Hill for the American College of Rheumatology multiples times, and speaks  of the patient perspective at medical/pharmaceutical conferences. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy. Kelly’s blog is “As my joints turn: my autoimmune soap opera.”  She has also authored a book about her chronically ill dog, called, “Making Lemonade with Georgia Grace," and writes under the pseudonym "George James", for her romance-themed works.


Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

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