Life-threatening, lifelong chronic diseases from infancy are at the top of the list of medical challenges. A woman who has dealt with cystic fibrosis her entire life discusses how mindset is often the biggest factor in living a full life with such a disease, and sets out her recipe for shoring up one’s approach.
Developing a chronic disease in your 30s or 40s strikes a lot of people as unfair. The deck seems stacked against someone like that. But what happens when you’re diagnosed with a lifelong chronic disease almost at birth? That’s what happened to Mary Elizabeth Peters, a theater artist and patient advocate in Boston.
For Peters, who’s 41 now, living with cystic fibrosis is how life has always been. Peters required a double lung transplant when she was just 29. That’s what got Peters interested in writing about disease struggles that simply never end. Her book is called Don’t Let Them Kill You: 10 Rules for Navigating Chronic Illness In the Age of Infinite Intervention.
Some of Peters’ rules are pretty straightforward. For example, with a chronic disease, you have to feel empowered to get second opinions and ask questions to decide the kind of life you want to lead. Other rules are practical.
There’s an entire chapter about how to get and keep a job with adequate benefits. Because when I was in my 20s, I needed a job with really good health benefits, and really good disability benefits, and really good sick time. And I needed a boss that was going to follow the Americans with Disabilities Act and let me have FMLA when I needed it. And I didn’t know anything about how to find a job like that. And how do you find a job like that right out of college?
Peters says that eventually cystic fibrosis took her sister’s life at age 36. But even knowing that, it was still surprising to be making tough decisions most people never have to think about.
You don’t believe it when you’re sitting there thinking, do I want to receive an organ transplant or do I want to pass away within the next year? Do I want to go back to work or do I want to stay home? And how am I going to live independently if I don’t work? You have to make choices when you have extreme health situations that you don’t enjoy making. But you have to be clear about what you’re going to do and why you’re going to do it. And kind of find power somewhere in there, even if the choice is not always the ideal.
That’s why Peters says people with chronic lifelong diseases may make a big deal over choices. Every one is important and a possible source of later regrets. You may not have a second chance to get it right, so you want to live exactly the life you want, notes Peters.
- Mary Elizabeth Peters, author, Don’t Let Them Kill You: 10 Rules for Navigating Chronic Illness In the Age of Infinite Intervention