“I’m not Hysterical, I’m Sick:” Kim's Story of Medical Gaslighting and More

Even after getting diagnosed with bi-lateral pulmonary emboli, a necrotizing lung nodule and periodic paralysis, Kim was repeatedly dismissed as being “hysterical,” “just anxious” and having “nothing wrong” with her when it turns out her lung had collapsed, she had an air leak on her lung suture line and she also had rheumatoid arthritis.

Kim shares her experiences and perspectives with candor in hopes that no one who’s gone through similar experiences will feel alone.

Episode at a glance:

• Kim’s journey going from 90 minute daily bike rides to not being able to walk due to a collapsed lung and other undiagnosed health issues.
• Kim’s multiple experiences with medical gaslighting, or being dismissed by medical providers, including being erroneously diagnosed with “conversion disorder” when she presented with lower body paralysis.
• Kim files a complaint with the hospital (who employed Kim’s original surgeon who told her “nothing’s wrong” when she in fact had a collapsed lung) and nothing happens.
• Kim and Cheryl discuss ways the medical system can be improved to avoid medical gaslighting in the future, including using systems like “risk management.”
• Kim shares what it’s been like to balance treatments for rheumatoid arthritis with hypokalemic periodic paralysis.
• Kim shares how she’s mentally coped with everything she’s been through.
• SUICIDE PREVENTION RESOURCE: If you are in the USA and you are in crisis, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.
• Kim and Cheryl discuss what it feels like to feel “trapped” in your own body
• Kim & Cheryl discuss “thin privilege” and how people who are overweight face additional stigmas when seeking medical care
• Kim & Cheryl discuss the “inconvenient truth” that so much of our health is influenced by luck rather than things we can control (like diet).
• Kim discusses equity versus equality and relates those concepts to healthcare
• Kim shares “a day in the life” and what tools help her function on a daily basis.’
• Kim shares what brings her joy in life, including rescuing kittens.
• Kim provides an alternative to the 1-10 pain scale.

Speaker Bios:

Kim:

Kim has experienced chronic intermittent pain since she was seven years old. She has been written off by doctors as being depressed, anxious, over exaggerating. Her severe pain experience has been in her head/neck/shoulders but more recently it has extended from her hips to her feet and from her shoulders to hands.

In between her daily struggles with pain, she has experienced massive bi-lateral pulmonary emboli, a lung nodule that started necrotizing her lung tissue, hypermobile joints and most recently periodic paralysis. The necrotizing lung nodule was determined to be rhematoid in nature so that put her into the rheumatoid family and a working diagnosis of rheumatoid arthritis.

Outside of illness, Kim is an academic librarian, an endurance cyclist, newborn foster kitten parent and lover of state and national parks.

Cheryl:

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. 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.

This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Join the waitlist today!

Episode links:

• SUICIDE PREVENTION RESOURCE: If you or someone you know is suicidal, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.
• Kim’s contact information:
  • Klooby2 -at- gmail.com
• Cheryl’s Arthritis Life social media pages:
  • Cheryl & Arthritis Life on Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join the waitlist for Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected.
  • Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition
  • Arthritis Life Youtube channel

Medical disclaimer: All content found on 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.

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