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Real Talk: Eosinophilic Diseases


Jul 16, 2021

Living with a chronic illness can take a toll not just on the patient, but also on their partner, and their relationship. Whether it is a relationship between a couple, a parent and a child, family members, or even friends, living with chronic illness significantly changes the dynamic. In this episode, Barbara Kivowitz, MSW, shares insights about what these changes are, and how to cope with them.

Barbara is a clinician, consultant, and author specializing in healthcare innovation with the goal of helping organizations shift to more relationship-based models of care. She is an advocate for the inclusion of the voices of patients and families in all aspects of health care delivery, research, education, and advocacy. Barbara has also co-authored Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, a guide to help patient-caregiver partners and their clinicians navigate living with chronic illness.

Barbara shares more about her own experience with chronic illness which inspired her to write the book, as well as some of the common challenges that patients and their partners face in living with chronic illness. She describes the impact of these challenges on relationships, and how best to resolve these issues. Barbara also has some inspiring wisdom about creating hope, and why that is so important. Tune in to find out more.

*Content Warning: This episode contains references to topics that may be upsetting or disturbing for some listeners such as depression and suicidal thoughts. Listeners are urged to seek professional help if they have these thoughts or feelings. Resources can be found at the links below.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their doctors. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests are their own.

 

Key Takeaways:

[0:52] Hosts Dawn McCoy and Ryan Piansky introduce themselves.

[1:49] Ryan introduces the guest for this episode — Barbara Kivowitz.

[2:26] Barbara shares a bit more about why she wrote the book “Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other.”

[4:11] What kind of relationship dynamic did Barbara focus on in her book?

[6:29] What are some of the common themes that emerged between patients and caregivers?

[11:32] What are some of the solutions to common problems that may arise in patient-caregiver relationships?

[18:08] For those who are newly diagnosed, where does Barbara recommend starting to engage between patient and caregiver?

[23:01] How can people find common ground when they have different opinions about treatment options?

[25:39] What are some of Barbara’s suggestions to find hope?

[29:58] Barbara shares some final thoughts around the impact of chronic illness on relationships.

[31:58] Get your copy of Barbara’s book from Rare Bird Books.

 

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Barbara Kivowitz

Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, by Barbara Kivowitz and Roanne Weisman

Buy the Book: Love in the Time of Chronic Illness — Rare Bird Books
Resources for Coping with Chronic Illness by APFED

 

This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

 

Tweetables:

“How does illness affect the patient-caregiver relationship, and what can we do to build the kind of resilience needed to carry that heavy load of illness?” — Barbara Kivowitz

 

“The biggest surprise was the pattern that we call ‘love grows’ — how illness can be a catalyst for putting people in touch with their deepest selves and for what truly, truly matters.” — Barbara Kivowitz

 

“Just having the conversation, just talking about it makes things different.” — Barbara Kivowitz

 

“Being aware, being deliberate, and collaborating is a good formula. It doesn’t get everybody to a happy place, but it can get you to clarity.” — Barbara Kivowitz

 

“Hope is something that can be created.” — Barbara Kivowitz