Dealing With Lifelong Disease

22-01 Dealing With Lifelong Disease

[00:00:00] Nancy Benson: This is Radio Health Journal. I'm Nancy Benson. This week: dealing with a chronic illness from childhood through your whole life.

[00:00:07] Mary Elizabeth Peters: You can't let all of this management of your illness kill your spirit.

[00:00:12] Benson: Coping with a lifelong disease, when Radio Health Journal returns...

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.

[00:00:41] Peters: I was diagnosed with cystic fibrosis when I was six months old. Because my older sister had been diagnosed with CF around the age of three, and she's about four years older than me. So they tested me as soon as they could, in 1980, which was at six months.

[00:00:56] Benson: For Peters, who's 41 now, living with cystic fibrosis is how life has always been. She says she did okay as a child when antibiotics were among the few additions to her life compared to classmates, but her older sister didn't fare as well. And Peters worried that she was just a few years behind.

[00:01:13] Peters: I was able to see what she went through physically. How the disease impacted her, and how she was able to manage it, and sometimes not manage it well, going through grade school and high school and then into college. So I think that, you know, the things that she went through were always a little bit worse than what I went through, just based on her age and being sicker younger. Which is kind of true for a lot of CF families, that the older siblings didn't receive the benefits of newer technologies, and newer medicines, and newer treatments. And so the younger siblings tend to be healthier than the older siblings.

[00:01:48] Benson: Peters says her older sister needed a lung transplant by age 25. By then Peter's own health had started to fail as well.

[00:01:55] Peters: For me, where my health started really failing me in high school. My lung capacity itself was falling away from me in high school. So as every time I got a pneumonia or every time I got sick, part of my lung capacity would be damaged and not able to be regained. And that kind of led to other problems, like my body working so hard to breathe that I was very malnourished. And then, being so malnourished you end up with a lot of GI problems and stomach problems. So as I went through high school and into my 20s, my health was just kind of fading pretty quickly.

[00:02:32] Benson: Peters got her own double lung transplant when she was 29. The operation saved her life, but it didn't alter her life as a patient as much as she expected.

[00:02:42] Peters: It doesn't take away the attention you have to pay to your health, in terms of a medication regimen that's very extreme. You know, I take a lot of medications to keep my lungs healthy and to keep my body healthy for my transplanted lungs.

And then the other, you know, physicality issues with cystic fibrosis are not gone. So I've developed diabetes since my transplant, which is something that happens to people with cystic fibrosis, and I've developed some problems with my kidneys. When you receive your transplant, you are also trading in for new health problems that you didn't have before.

[00:03:18] Benson: 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.

[00:03:31] Peters: The book is kind of heavy-handedly about making sure you're taking charge of your health care, and that you're learning about any condition or disease that you're being diagnosed with. And that you're learning about the treatments that are available, and seeking quality, high quality care. Asking questions about your care and asking questions about the medications you take, asking questions about procedures that you're asked to endure.

And I think that a lot of people with chronic illnesses that extend from childhood into adulthood, don't take on that empowered adult mindset about managing their illness. Or managing their adulthood, right? And there's a lot of things that have to come together for you to be well and independent with a chronic illness.

[00:04:19] Benson: 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.

[00:04:33] Peters: 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?

So there are certain chapters in the book that are about stepping into what you want to do with your life. If you want to be married and have children, how are you going to manage that and your illness? If you wanted to be married and have children and a career, how are you going to manage that and your illness? If you want to get a PhD or a doctorate, how are you going to manage that and your illness?

[00:05:19] Benson: 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.

[00:05:30] Peters: 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.

[00:06:01] Benson: 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.

[00:06:17] Peters: I always grew up with a generation of children with cystic fibrosis, including my sister, who we're dying very, very young. And children I was in the hospital with passing away, and family friends of ours passing away when they were very young. So I grew up thinking I might not ever make it to college. And then I was in college and I thought I might not ever make it to grad school. I might not ever get married. I might never live independently. I might not be 20. I might not be 30. And now I'm 41.

So I always thought, well, if I'm going to go to college, I'm going to go to college for exactly what I want to study. And if I'm going to move across the country, I'm going to move somewhere exactly where I want to live. And if I want to have a career that's going to be demanding and take away from my complete focus on my health, I'm going to have exactly the career that I want.

[00:07:09] Benson: Mary Elizabeth Peters' book Don't Let Them Kill You: 10 Rules for Navigating Chronic Illness is available now. You can find out more about it and all our guests through our website, radiohealthjournal.org. Our production manager is Jason Dickey. I'm Nancy Benson.