When you are part of a rare disease or chronic illness community, there is comfort in building relationships with others whose lives look like your own, those who understand the terminology and the reality of your daily life. However, those important friendships can lead to unhelpful comparisons or even heartache as friends are lost to the disease. Listen in as Allison and Justin describe the ups and downs they’ve experienced in friendships with fellow caregivers and with those living with chronic and serious illnesses.
As chronic illness caregivers, Justin and Allison are used to experiencing daily challenges, but in the past weeks they’ve both found themselves in unexpected medical situations beyond their norm.
Allison and Justin describe the unique challenges that arise when the person you’re caring for has an invisible illness.
Justin and Allison discuss the ways in which caregiving impacts their physical, emotional, and mental health, what burnout feels like to them, and how supporters can help.
Allison describes the recent battles she has been fighting since learning that Sean's home health supplies are not covered under Medicare. Justin shares the dehumanizing process Sarah went through when applying for disability. Both dig in to what it feels like to fight back against a broken system.
Allison and Justin talk about how caregivers need community care in order to practice self care, how they each practice acts of micro-care throughout the day, and what supporters can do and say instead of, “Are you taking care of yourself?”