Years ago, I never thought I'd be open about my disease. With anyone. Over time, I opened up to a few friends, but never at work. I had this feeling that a diagnosis of a chronic illness would hold me back. I worried that my employer may view me as too expensive or too risky. I worried that my coworkers might look at me as a burden. I was wrong to feel this way, but I was certainly not alone in these fears.
Too often, I meet people who admit to me in shared secrecy that they, too, have a chronic illness, but that they don't want others at work to know. It doesn't have to be this way. In fact, this approach has led to many who wrongly assume that a chronic illness is career-stalling (at best) or even career-ending. My own parents, one day, commented "have you thought about not working -- doesn't it seem like too much?"
But I wanted and continue to want to "make it all work." Maybe not all at once, because I'm realistic (and, sure, once in awhile it is too much), but I want to reach my career dreams, too.
With only a small handful of patients like me, with Inflammatory Bowel Disease, able to be fully open about their illness while maintaining high-profile or leadership roles, there aren't many examples to lead the way on how to actually make it all work. And to demonstrate that it will all be OK.
Representation matters. Diversity and the voice of someone with lived experience matters. And yes, professional skill also matters. But people with chronic illness can be all of these things -- they can bring the lived experience, unique voice, and the professional skill that will enhance a team. The empathy and determination required to be successful in the face of a challenging illness only enhances these necessary skills. In fact, empathy, is a necessary trait for a leader.
No place is this skillset needed more than in the healthcare system that meets the uniquely challenging needs of those patients with chronic illness.
Want to see disruption the healthcare system? Then hire more representation from those with true lived experience and seat them at the table. Not just on a committee (but those continue to be important, too), and not just as consultants to ensure compliance with a grant. Hire patients with chronic illnesses and elevate their voice. Include them in strategy, quality, and service excellence as a member of the team. Include patients in leadership. View advocacy as a contributor on a resume. Actively seek out advocates and help sponsor them to move into roles that currently feel like they are reserved for clinicians.
Leaders in healthcare, especially those who have come to appreciate the input that patient advocates provide, should see themselves as essential allies to make this happen. Health systems and health care companies should view this as an essential act of doing business.
After 10+ years deeply embedded in healthcare as a patient and patient advocate, I can assure you, many of us with a chronic illness posses a lived experience degree that would rival that of many new grads. But it's not so easy to highlight this level of intimacy with the healthcare system on a resume -- persevering through chronic illness doesn't come with a certification that can be added to a LinkedIn profile.