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
113: Myositis Thriver Michole J