I’m a little tired of being “resilient,” aren’t you?
I’m told I’ve developed resiliency, and that’s how I’ve made it through the difficulties with my illnesses (ulcerative colitis and others) and their treatments, such as surgeries. I don’t really think of it that way, however. My perspective on resilience is that I don’t see how I could exist without it.
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People with chronic illness are innovative. We have to be, because even though we have limited resources available to us, we’re often expected to achieve at the same level as people who are healthy.
In Episode 172 of About IBD, I talk to Rachel Bee. Rachel was diagnosed with Crohn’s disease at the age of 13. She successfully navigates the challenges of living with IBD while also becoming an entrepreneur. She founded Infusion Hero, a business dedicated to creating specialized hoodies for young patients undergoing infusions.
This blog post outlines some insights from Rachel, including valuable advice and inspiration for budding entrepreneurs.
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Kids with chronic illness face special issues when going back to school because they’re at risk of their accommodations becoming eroded. In particular, children who live with Crohn’s disease or ulcerative colitis might be in danger of not being granted appropriate bathroom access. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. We discuss the worrying behaviors that parents should watch out for in their kids and how we can help kids who feel scared to go back to school.
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Back to school will be quite different for families across the United States and the world this year. There aren’t many answers to be had to our questions, yet we must make decisions with the best information that we have at this time. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine about how we can prepare our kids, and ourselves, for the school year. We discuss the behaviors we can model for our children, how we can talk to young kids about mask wearing, and how to engage kids of all ages in conversation about their fears and anxieties during this time.
Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn’s disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn’s in order to share what she’s learned with the IBD community.
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How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease.
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Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.
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Many people with inflammatory bowel disease (IBD) will admit to having a body image issue. The research shows that people with IBD who have a healthy self-image are in the minority. After all, how could we not have issues with our bodies? Our bodies fail us without warning, not to mention the symptoms of IBD which are often distressing and personally upsetting to oneself and to others.
It’s funny, now as an “over 40,” I think back on the days when I was younger and I have to laugh at my skewed sense of self. The facts that support my internal monologue on body image will surely upset those who were closest to me when I was a child and a teen. We didn’t have the vocabulary to discuss things like body image in the 70s and 80s and there wasn’t anyone who told me the things I tell my daughter, that her body is strong and beautiful and that we will do our best to take care of it.
Graduation day! That’s me and my dad, who passed away in 1998. Helloooo prednisone moon face on me.
After my first colonoscopy and my diagnosis of ulcerative colitis, I spent about 40 days in the hospital. I was a junior in high school, so that whole situation had to be dealt with. Thankfully I was a good student, and when it was time to deal with homework and missing class, I was able to cope with much of it.
I had great teachers in high school — for the most part. Continue reading