Living With Chronic Illness: A Patient's View

Nicholas Genes, MD, PhD


July 24, 2007

Laurie Edwards is a writer whose columns on relationships have appeared in the Boston Globe Magazine. She also teaches writing to health professions students. But online at her Web site, A Chronic Dose, she adds a third role: the patient with a rare disorder, grappling with the long-term sequelae.

Dr. Genes: You were born with primary ciliary dyskinesia (PCD). I must confess, I had a professor who got more excited about cilia than anyone had the right to be, and some of it rubbed off on me. So I've got to ask: Do you have the related condition, situs inversus (SI; internal organs on the opposite sides), as well? In other words, is your heart in the "right" place?

Laurie Edwards: I don't have SI, though it is common in people with PCD. I love that there is someone on this planet who is way more excited than anyone has a right to be about cilia. Seriously. I'm imagining him in a lab right now, squinting at a slide and trying to decipher the state of motility on it, and I am glad he is there.

Here's an interesting tidbit you may enjoy: No one can seem to find any cilia at all in my respiratory tract. Numerous biopsies were taken from all different sites and yielded nothing. Technically, this is ciliary aplasia, a subset of the group of disorders known under the umbrella term PCD, and it's really rare (you know it's bad when the subset of the already extremely rare disease is classified as even more rare, but we do rare diseases really well in my family). There could be some lone rangers somewhere that escaped biopsy, but whether I have a few measly cilia that don't move the way they need to or I don't have any cilia at all, it means the same thing in terms of how I feel, how I treat the disease, and how I live my life.

I also love that you asked about PCD at all, because so few people have heard of it ("You have what? PCD? Are you talking about the Pussycat Dolls?") or know enough about it to care, and it can be extremely hard to diagnose. I should know; I was 23 before I had the right diagnosis, yet I've been sick since birth.

A Chronic Dose hosts Grand Rounds
July 24, 2007

Dr. Genes: You've been working on a book about chronic illness in young adults. Is it based on your blogging?

Laurie Edwards: My book (also called A Chronic Dose) is a combination of memoir, research, and interviews with patients with chronic illness in their 20s and 30s, whose experiences come from all across the disease spectrum. I am interested in both the population of people with serious childhood diseases who are living into adulthood in greater numbers than ever before, as well as the huge number of patients who get diagnosed with chronic and autoimmune disorders during their childbearing years.

What excites me about the book is that it explores issues that so many people like me face every day but aren't talked about or recognized as much by society -- anything from the impact of spousal caregiving in younger marriages to succeeding in educational and workplace environments that aren't used to dealing with chronic illness in younger people on such a scale. Not too long ago, it was unheard of to talk about a 30-something cystic fibrosis patient on the lung transplant list having a baby, but more and more situations like that are happening. So how do you handle all of those usual stresses of life at this age in addition to illness, and how can society and medicine as an institution keep up?

These are the kinds of things our stories tackle. (And it's not all serious stuff, either; from dating disasters to sibling squabbles, there is a lot of room for humor in any discussion of illness.)

Dr. Genes: You teach writing to students in the health sciences. Are you amused or appalled by some of the stuff you read? Did you chose a job like this to help shape attitudes towards illness, or is it just a natural fit?

Laurie Edwards: On the whole, my students produce really insightful material that resonates with me both personally and professionally. They know that I am a writer and they know that I write a lot of health and science pieces, so there's a level of mutual understanding and interest that is hard to find in a typical college writing classroom.

I think the most surprising thing I've encountered is that, at first, many of them don't see how writing and communication relates to their field. The first day of the semester, I know some of them wonder why they're taking my class when they could be in a science elective or at clinical. They don't consider all the different modes of writing that surround them -- from charts and notes to informed-consent waivers and patient education materials -- as actual forms of communication.

On a different level, most of them have already gone through at least 1 clinical rotation (nursing, physical therapy, pharmacy, etc), and they're so focused on the body of scientific knowledge they need to be practitioners that they don't realize the importance of audience. Given how much they need to know, I can't say I blame them. The best moment for me in the classroom is when they get to that point on their own where they realize how essential being able to translate their knowledge to different audiences truly is, whether that audience consists of students, practitioners, patients, or the general public.

I am so lucky to be able to do what I do. It's a natural choice for me, both as a patient and as a writer. I've always been interested in the way illness influences identity and how language relates to that process -- one of my courses is even called "Constructions of Health in Contemporary Literature" -- so being able to explore these issues in a room full of emerging health professionals is an incredible experience.

Dr. Genes: How has medical blogging, and reading doctors' and nurses' blogs, changed your perspective on them and their attitudes?

Laurie Edwards: When you spend most of your life in and out of hospitals, you confront a whole spectrum of personalities. I've had some truly awful experiences with physicians, especially when it came to diagnosing my rare diseases; I've found that sometimes specialists don't like it when the diagnostic box they've constructed just doesn't fit right. But more important, I've had some absolutely amazing practitioners who have helped me in so many ways -- people who take the time to listen, to question, to diverge from the status quo if need be, who show me on a regular basis that I am a person in their eyes, not simply a chart.

That's why I enjoy reading what doctors and nurses have to say in their blogs, because I recognize in so many of their insights, descriptions, and anecdotes the same qualities that mean so much to me as a patient. And of course, it's great to be able to get a closer look at the other end of things, so to speak. As a patient, I'm used to hearing things from our perspective, but I really appreciate the window into what it's like to be the practitioner, and I think it's made me soften somewhat when I think back to some of my less than spectacular medical experiences. At the end of the day, most people are doing the best they can with the resources they have.

Dr. Genes: Has writing about your illness created a barrier in your interactions with other medical bloggers? Do healthcare professionals get uncomfortable around you?

Laurie Edwards: There's such variety when it comes to medical bloggers, and not just in terms of whether the blogger in question is a patient, a practitioner, an advocate, etc. Everyone approaches content in a different way, and I totally respect that. We need all of those different points of view. I started this blog with the idea that my posts should (ideally) stand alone as short essays on various themes of living with chronic illness: identity, survival, isolation, recovery, relationships, etc.

Sometimes I get pretty personal -- for example, the blogosphere knows more about the challenges of infertility and high-risk pregnancy when it comes to some of my health conditions than most of the people who are close to me in real life do. Sometimes I keep it more general or discuss issues of policy or attitudes towards illness.

I call myself an equal-opportunity patient because I have so many different conditions, but in a way, that's kind of the point of the blog. I am glad that I can explore the rare-disease phenomenon, but at the same time, it's great that when I write about, say, celiac disease or chronic fatigue, I know so many people are going through the same scenarios. Whether a reader has any of the conditions I have or has something totally different -- diabetes, Crohn's, migraines, etc -- my hope is that the overall message is just as relevant. It's the impact of illness on self-perception and professional and personal lives that I find interesting, rather than the disease itself. To be authentic, I have to be willing to disclose the personal stuff, but I try to stick to the most salient details.

As far as I know, healthcare professionals don't get uncomfortable around me. (Or if they do, it's less to do with blogging and more to do with the fact that I am "clinically interesting." I sometimes feel really badly for the people whose job it is to figure me out.) Actually, my pulmonologist is really excited about all my writing; he keeps an eye out for my essays in the newspaper and can't wait for my book to come out because he's in it (and it's all very flattering because he is wonderful!).

Dr. Genes: Now it's our turn to get excited, as Laurie Edwards hosts Grand Rounds at A Chronic Dose this week. Check out her collection of the best in online medical writing from around the world, with submissions from doctors, nurses, students, healthcare professionals... and patients.


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