Trigger warning: This episode includes a discussion of near-death experiences, medical trauma and decisions about quality of life versus prolonging of life. If you are having a mental health crisis or are struggling with suicidal thoughts, in the US you may call “988” for the Suicide and Crisis Lifeline which is staffed 24 hours a day.

In this episode, Hay shares her tumultuous experiences with autoimmune vasculitis. She and Cheryl urge fellow chronic illness warriors to resist trying to fit their experience into a tidy narrative and instead ride the waves of uncertainty. While extremely challenging, Hay notes that “deep calls unto deep”, allowing shared humanity and connections based on what unites us all.

For Full Episode Details Including Transcript:

Go to the episode page on the Arthritis Life Website at: https://arthritis.theenthusiasticlife.com/2023/01/17/how-i-survived-survival-mode-marriage-faith-near-death-experiences-with-autoimmune-vasculitis-warrior-hay/

Episode at a Glance:

Education and work: Hay earned her PharmD (Pharmacy Doctorate) in 2011, but began experiencing chronic illnesses shortly after. She has learned to understand that your value is not based on your productivity.
Relationships: Symptoms like fall risk, limitations on leaving the house, and being in “survival mode” have been trying on her marriage, but her husband never gave up.
Diagnosis saga: living with Behcet’s vasculitis, common variable immune deficiency, Microscopic colitis, and respiratory failure, along with a variety of complications
Treatment journey: Hay explains how she uses total parenteral nutrition (TPN, aka “vein food”) due to her GI tract not absorbing and has had a lot of trial and error with medications over the years, some even working against each other. She eventually found a promising mix of medications that has recently been helping her improve. She has been working with a team of seven specialists who collaborate on her treatment, especially from a palliative care perspective.
Coping and advice: Hay shares the importance of art, faith, clear communication, and having boundaries. She explores how she tries to live life to the fullest within constraints. After having to deal with end of life conservations, she notes that “The way you hold people’s stories has to be infinitely more gentle than you thought”. Having been a writer and interning for a literary agent, she is used to stories being explained in 45-65 minutes but life with chronic illness feels like “you’re on a blindfolded roller coaster you’ve never seen before”. Cheryl and Hay discuss the benefits of resisting the urge to force your experience into a tidy narrative.
Surviving SURVIVAL MODE: Hay shares how some days have been just living breath to breath and opens up how she’s allowed herself to grieve and learned to “riding the waves of uncertainty.” She shares what it’s like to have conversations about quality of life vs prolonging life. She explains the importance of connecting to others and exploring our shared humanity, “because deep calls unto deep” - what is happening, why am i here, what connects us, and understanding you’re not alone. She also shares how religion and faith have served an important purpose in her life.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in March 2023!

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