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

023: Two Being Healthy on Living W ith & Blogging A bout Lupus, POTS, MCAD, and EDS 01:12:41 Share

Uninvisible Pod with Lauren Freedman

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023: Two Being Healthy on Living W ith & Blogging A bout Lupus, POTS, MCAD, and EDS