023: Two Being Healthy on Living W ith & Blogging A bout Lupus, POTS, MCAD, and EDS
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Em & Kate are the sisters behind the wellness blog Two Being Healthy. Both live with lupus, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), mast cell activation disorder (MCAD), and cytochrome mutations (which have affected their ability to metabolize certain drugs). Having spent much of their adult lives living with and navigating the symptoms of invisible illness, the two act as co-advocates for one another and have been by each others’ side through their ups and downs. Their goal is to shine a light on invisible chronic illnesses, share all they’ve learned along the way, and document their everyday journey. In finding community with each other, they have given community to countless others on the road to wellness.
**Join us as Em & Kate share… **
that on top of lupus, POTS, EDS, and MCAD, Em also has muscle myositis
that Kate is also prone to chronic migraines
that both women began to show symptoms when they were around 17
that Em’s initial lupus symptoms came on like an extended flu that never healed
considering both women have similar conditions, they are on different medications
that the medication journey is a never-ending one – as their bodies shift, their medications do
that the most constant in their medication regimens has been an immune booster (which lowers antibodies)
the psychological journeys they’ve been on in reaction to their physical struggles
that low-histamine diets has all but eliminated their MCAD symptoms, in addition to histamine blockers
that, in addition to each other, Em & Kate have been able to lean on their mom for support – and, as they were to discover, she lives with some of the same conditions that they do
the link between POTS, EDS, and MCAD
that they had to give up yoga because of the hypermobility associated with their EDS, and now do mat Pilates instead
why they advocate for therapy, and awareness of emotional fluctuations in relation to physical frustrations
the challenge of being undiagnosed
the grieving process of accepting your body as it is, post-diagnosis
that they used to be much more private about their conditions, and suffered social anxiety as a result – but tired of the isolation, and began to own their lives fully
that being chronically ill has developed their ability to communicate: because often, friends wouldn’t understand their conditions or that they were invisible
that they’ve been discriminated against for using handicap parking passes and taking elevators, because they are young and healthy-looking
how being chronically ill has taught them to remove their inherent judgments of others
the gender divide on discrimination
that the added stress of not living up to the standards of people who don’t understand us can make us sicker – and sometimes, losing those relationships lifts a burden and allows us to heal
what inspired them to start Two Being Healthy, and their individual strengths within the blog
how empowering the blog has been for them
why they are so in touch with their emotions, and the importance of a good cry
why having a doctor who doesn’t understand you can be soul-crushing
the importance of learning to be your own advocate and trusting your body
the connection between the onset of symptoms and anxiety, and how having a comfort pack in your handbag can reduce worry
why managing health insurance requests is a full-time job
why they joke that they are each other’s hype women, and how that has strengthened their bond through chronic illness
the importance of a doctor whose ego is not involved in their decisions and diagnoses
the importance of a circle of trusted friends, and a support system – even if it’s on FB
the importance of finding ways to reduce stress and increase comfort
the importance of moderation, even in the application of healing modalities – and why you still need to live your life and do the things you love 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)