113: Myositis Thriver Michole J

Uninvisible Pod with Lauren Freedman

Michole J lives with rare muscle disease polymyositis (PM), which falls under the umbrella of muscular dystrophy. PM is an uncommon inflammatory disease that affects the entire body — and while Michole began to exhibit symptoms in her late 20s, she was diagnosed at age 30 with the rarest form. Living with the condition create mobility challenges, from climbing stairs, lifting objects, raising her arms, and even becoming rapidly exhausted from any kind of movement, to breathing issues due to the spread of inflammation to her lungs. Michole’s mission is to bring more awareness to invisible illness, reminding us that we may not all have the same illness (or any illness at all), but that our struggles are still the same.

Tune in as Michole shares:

• how she first started experiencing symptoms
• that it took almost three years and several hospitalizations for her to get a diagnosis
• that her symptoms overlap with numerous other chronic illnesses
• that polymyositis is a progressive disease, and largely affects her limbs
• that she was never offered mental health support along her diagnosis and treatment journey
• that she’s now got the additional diagnosis of ILD — interstitial lung disease
• the struggle of being believed when living with invisible illness
• how her mother has stepped up as an advocate for her since her diagnosis, and how they have become even closer as a result
• how caregivers experience chronic illness and disability alongside their loved ones
• the importance of remote work opportunities for her
• why the cost of healthcare and treatments can be debilitating for patients
• discrimination she’s faced from the public
• how race has impacted her experiences in the medical system (and beyond)
• her frustration with lack of representation in rare disease
• how a lack of curiosity in the healthcare system is causing problems for patients
• how she’s learned to say “no”
• why it’s useful to develop a meaningful relationship with your practitioners

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