026: T. Sydney Bergeron Mikus on Living with Tick - Borne Disease , POTS, and Hashimoto’s
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
T. Sydney Bergeron Mikus is an award-winning writer, artist, designer, model, and activist based in NYC. They live with TBD (tick borne disease), including Lyme, Bartonella, and ehrlicia, as well as POTS (postural orthostatic tachycardia syndrome). They create work driven by healing advocacy, art, and narrative as tools for change, and self-care as disruption. They are the founder and director of Simple Politicks, and co-host the Invisible Illnesses Support Circle at The Wing. They are also an inaugural member of the disability council at The Wing, advising on events, new spaces, and other accessibility topics. Sydney is a queer, nonbinary femme living with chronic illnesses that cause intersystem disabilities.
** Listen in as Sydney shares… **
- how it took almost a decade for them to be diagnosed
that tests for tick-borne disease can be very unreliable; and even inconclusive results can mean diseases and co-infections are present
that sometimes symptoms are hard to pinpoint, especially if they are subtle and feel like “just part of being a person”
that their mom also has Lyme
that so many Lyme specialists do not take health insurance, which makes treatment restrictive
that they waited until they were really sick to finally get treatment
that they started treatment with holistic methods before starting intravenous treatment; they were supposed to get a PICC line, but discovered they were allergic to heparin (blood thinner), which is used to clear PICC lines in treatment
that they are combining holistic and intravenous treatments now, and will soon start antibiotics again to combat TBD symptoms
that they are now using therapies that track the frequencies of bacteria in their blood
that the CDC does not recognize Bartonella as a TBD, but most Lyme organizations do
that they have their cat, Lupin, registered as an emotional support animal – and he really helps with their mental health, as well as supporting when they have physical symptoms that crop up
that many TBDs have overlapping symptoms, which makes them even harder to diagnose, treat, and be aware of in general
that Lyme can cause POTS – not in all cases, but in some
that water, salt, and beta blockers have been useful for their POTS symptoms
that Ritalin has been helpful for brain fog
that they were very close to a final diagnosis of Hashimoto’s at the time of recording, and this has now been confirmed
that they didn’t identify as disabled for a long time – but they do now
that they are their own advocate in most ways, having dived into research of their conditions independently – but that their mom has also been a great support
that brain fog is incredibly frustrating
their heroes in the invisible illness community, who have inspired them to be more open about living with disability and to become more empowered in that identity
how they have channeled their experience into advocacy
stories about accessibility, accommodation, inherent privilege, and disability awareness This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)