Today’s episode is with Karina Sturm! Karina is a German native who is now in San Francisco. She’s a research associate turned journalist living with several chronic illnesses and an invisible disability. Her main health condition is called Ehlers-Danlos syndrome, a rare connective tissue disorder that leads to many co-morbid conditions. She’s had around a dozen diagnoses, including dysautonomia, mast cell activation, small fiber neuropathy, a rare bleeding disorder called factor VII deficiency and much more.
We absolutely loved hearing from other spoonies out there and we got INTO IT with Karina today. We chatted about her experience with multiple chronic illnesses, we ranted about hustle culture and how it’s negatively affected the chronically ill for many years.
In today’s episode we chat about:
Karina’s story with invisible and multiple chronic illness
Some specific symptoms Karina deals with with EDS and MCAS
The three of us went on a rant about hustle culture and working with chronic illness
Companies shifting to remote work because of the pandemic, but wishing that companies would’ve thought of this for those of us who have been living with chronic illness or disabilities for awhile
What came up for Karina or were amplified because of the pandemic
Coping techniques that Karina uses
Being a voice in the community for chronic illness and how Karina got into it
Dogma and the problem with social media and chronic illness Facebook groups
Links and things: