Living with Chronic Illness: A Conversation for Everyone with a Body, with Sarah Ramey

Look, there are some things in life - a LOT of things in life - that just can’t be fixed or made better, you have to figure out how you’re going to live with them. If you’ve ever felt othered and invisible because of an illness or disability - this episode is for you. If you’ve ever loved someone with a chronic illness, or you’re a medical provider in any capacity, this episode is 3000% for you. And if you’re grieving some other loss or hardship, you’ll recognize so much of yourself in this conversation: that human desire to be seen, loved, and supported, exactly as you are.

Sarah Ramey spent DECADES trying to find answers for why her body was falling apart. Her book, The Lady’s Handbook for Her Mysterious Illness, describes the complex, convoluted path through conventional and alternative medicines, her frustrations with being deemed a liar and hypochondriac, and the overlapping issues of misogyny, ableism, and well meaning but unhelpful support.

5 things you’ll learn in this episode:

• What it’s really like having a chronic, invisible illness (and if you have one, you’ll feel seen!)
• How truly messed up the medical system is: Sarah’s years’ long efforts to be believed by doctors, and at a minimum: not be overtly harmed while seeking care
• How does being in a female body shift your odds of being believed - for ANYTHING, but especially mysterious, chronic illnesses?
• Sarah’s music was featured in the hit show “Wednesday,” on Netflix. Can you be a successful musician and have a disability?
• Why hope is a complex concept when your life is constrained by illness or disability (and why hope is still REALLY important)

To join the next embodied writing course mentioned in the show, sign up at roottherapymaine.com

Notable quotes:

So much of the experience of having one of these illnesses is sort of having to turn yourself inside to make everybody else be able to see what you can feel, but they can't see. - Sarah Ramey

There's just this incredible dehumanization that has sort of taken over medicine. If you have a problem that is disbelieved by medicine, it often feels like, why did I come at all? Why am I paying even a single dollar to be made to feel like I am a worthless, bad person, who's a liar and a malingerer? - Sarah Ramey

You have to start with believing what the people living it are telling you. Nothing else can happen unless you listen, and you believe. - Megan Devine

About our guest:

Sarah Ramey is a writer and musician (known as Wolf Larsen). Her work has been featured in The Paris Review, NPR, The Atlantic, The Washington Post, Ms. Magazine, and the Netflix show, Wednesday. Her book, The Lady’s Handbook for Her Mysterious Illness was a starred selection for Publisher’s Weekly, Kirkus Reviews, and Booklist. Learn more at sarahmarieramey.com and wolflarsenmusic.com.

Sarah has been living with serious chronic pain and illness for seventeen years.

About Megan:

Psychotherapist and bestselling author Megan Devine is recognized as one of today’s most insightful and original voices on grief, from life-altering losses to the everyday grief that we don’t call grief. She helms a consulting practice in Los Angeles and serves as an organizational consultant for the healthcare and human resources industries.

The best-selling book on grief in over a decade, Megan’s It’s Ok that You’re Not OK, is a global phenomenon that has been translated into more than 25 languages. Her celebrated animations and explainers have garnered over 75 million views and are used in training programs around the world.

Additional resources:

To join the next embodied writing course mentioned in the show, sign up at roottherapymaine.com

Read Sarah’s memoir: The Lady’s Handbook for Her Mysterious Illness

Listen to Sarah’s solo album: Quiet at the Kitchen Door

Want to talk with Megan directly? Join our patreon community for live monthly Q&A sessions: your questions, answered.

Check out Megan’s best-selling books - It’s OK that You're Not OK and How to Carry What Can’t Be Fixed

Books and resources may contain affiliate links.

Get in touch:

Thanks for listening to this week’s episode of It’s OK that You’re Not OK. Tune in, subscribe, leave a review, tag us on social with your thoughts, and share the show with everyone you know. Together, we can make things better, even when they can’t be made right.

Follow the show on TikTok @itsokpod and use the hashtag #ItsOkPod on all social platforms

For grief support & education, follow us at @refugeingrief on Instagram, Facebook, Twitter, and TikTok, and follow Megan on LinkedIn

For more information, including clinical training and consulting and to share your thoughts, visit us at megandevine.co

See omnystudio.com/listener for privacy information.