When I interview someone about their journey with chronic illness, either for a written piece or for About IBD, I’m keenly aware that I’m asking them to tell me about the worst things that have happened to them.
This process can go down in a variety of ways. Some folks can launch right in and tell their story. Others might need help crafting it a little: pulling out the most important pieces and relating it to a larger message. And more commonly, people need to have some time and an empathetic ear to talk through it and cope with the emotions being brought to the front.
Because almost no one has ever asked them to tell their story before — and listened to them until they stopped talking.
“Telling Your Story” Can Be Difficult
What’s becoming increasingly clear to me is that writers and journalists who don’t work in the chronic illness community don’t understand the care that must be taken with the process. It can be exciting to be contacted by someone in the media who wants to talk to you about your story. But they, and you, might not realize the toll that it can take.
As people living with IBD, we’re expected to be resilient. To bounce back. To give up the right arm after all the veins in the left have been blown. To do a colonoscopy prep yearly, or more. To change medications — again — and fight with everyone about not only getting the drug, but how it makes you feel when you take it.
It’s no wonder that some people find being asked to be resilient or being encouraged to be so, tiring and frustrating.
Cultivating Resilience Goes Beyond Instagram Quotes
That’s why I talked to Mara Shapiro on Episode 123 of About IBD. She has developed that resilience muscle because she needed to, and it didn’t matter how she felt about it. She had losses early in life and was then diagnosed with a succession of acute and chronic illnesses.
As Mara says, “I feel like as a, as a child, I was left with no other choice… resilience is baked into me from dealing with that experience, and kind of imprinted on me at such an early age that it’s now this really strong, like core guiding principle in my life.”
She demonstrates a realistic view of resilience. It’s not the be all and end all to making everything “better.” It also doesn’t mean that everything is perfect and that it’s possible to cope with anything that happens.
“I think one of the biggest misconceptions is that it’s this all or nothing mindset over you’re either resilient or you’re not,” Mara said. “You know, resilience is like a muscle that you flex …it’s something that always has room for improvement and growth. And no one can really claim they’re resilient 100% of the time. And I don’t think anyone is asking that of anyone.”
But I Don’t Want to Be Resilient…
I pushed her on the idea that people with chronic illness are tired of being resilient. That it has become a buzzword that might even set some people off because they’ve been hearing it applied to them so much. The idea that turning the other cheek isn’t something that should be expected of people with chronic illness, but that we should expect the people around us to be more compassionate.
Mara has thoughts on this idea, and where it might stem from. “Another common misconception is that resilience is in a sense, like invalidating peoples suffering, right?,” she points out. I think that’s also an idea maybe that is seeping in from some of our health care providers…[but] resilience isn’t asking you to ignore your suffering. It’s suggesting a way to accept and coexist with that suffering in a productive way.”
As we move forward and call for more attention to be paid to the mental health aspects of illness and grief, resilience is likely to be a core topic. Living with a complicated disease such as IBD, there’s much that can be out of our control, which can make it challenging to identify the things that can be controlled.
It’s not easy to develop resilience and it doesn’t mean that patients or care partners shouldn’t advocate for themselves or their loved ones as fiercely as they often do. What it does mean is finding a way forward that incorporates the different parts of living with a chronic illness so that the experiences of grief and trauma don’t become overwhelming and turn into a barrier to achieving goals.
Resilience Doesn’t Invalidate Your Experience
Mara offers her view of finding harmony in the journey. “We can’t really control the the physical suffering that that we live with as a result of our chronic illness. But we can control and kind of shape the way that the emotional suffering plays into that physical suffering. And I think that resilience is a key aspect and kind of finding that balance between what we can control and what we can’t control.”
Hear more about Mara’s story with chronic illness and learn how she has incorporated the practice of resilience into her life on Episode 123 of About IBD. Plus: find out about her work in the chronic illness community and how her love of her pet Corgi and the outdoors help her cope with all she has been through.
Find Mara Shapiro (and Morty) at: