Spotlight: Laurie Edwards @achronicdose

Spotlight: Laurie Edwards
Websites: A Chronic Dose
Twitter: @achronicdose
Blogging since: 2006
Occupation: Writer, consultant and professor
Favorite vacation spot: Cape Cod, MA; Ireland; Napa/San Francisco, CA.


What was the motivation behind your first book?
While there are plenty of books out there on chronic illness, I didn’t feel there was any one resource that spoke to the particular needs of younger adults in an upbeat, authentic way. From navigating college to building our careers to maintaining relationships--chronic illness hugely affects virtually all major life issues that characterize the young adult time-period. I knew there had to be plenty of other young adults like me and I felt we deserved attention.

What made you start blogging?
I started blogging as a way to gauge my audience and connect with other young adults living with chronic illness. It was great to hear from people who were so similar to me in so many ways--even if our diagnoses were different, especially the rare disease patients. I also felt like I’d accumulated a lifetime of experience as a patient. So I felt that sharing and exchanging that knowledge with other patients would be mutually beneficial. Now, a few years into it, I’ve gotten to know some amazing patients, physicians, and other healthcare people that I continue to learn from. It’s been a lot of fun!

What motivates you in your writing?
My motivation has always been both personal and professional. Obviously as a lifelong patient with rare diseases, I feel a personal pull to educate, probe, and stay informed. As a professional writer and professor, I always want to sink into the next big project and try new things. My next book is a lot more research-intensive than "Life Disrupted" and has a much different feel. I love that variety.

Who do you admire most in the chronic community?
What I love about the chronic community is that everyone is doing something different. Some focus exclusively on the emotional or the physical. Others look at policy or law, etc.

I think Jenni Prokopy at ChronicBabe.com is doing a great job building a community of young women. Duncan Cross at Duncancross.net has one of the most intelligent, eloquent blogs I’ve read, and blends the patient narrative with analysis so well. Two of the patients I interviewed for "Life Disrupted," were young adults with cystic fibrosis. They have had the most impact on me—their suffering, their courage, and their wisdom have taught me so much.

What are the most common questions people ask you – and what do you tell them?
Nobody has ever heard of one of my more major diagnoses, Primary Ciliary Dyskinesia (PCD). So the most common question I get is, "what is that?" I usually explain that it is a rare genetic respiratory disorder where mucus builds up in my lungs and causes infections, decreased oxygenation, etc. It’s similar in some ways to cystic fibrosis. And because people have heard of that, sometimes I will compare my disease to CF. Also, even when I am not acutely ill, I cough a lot. So people also ask me if I am contagious (or inch away from me!).

Since the book has come out, patients write me questions about education, dating, and working with chronic illness. I try to emphasize the importance of being proactive, asking questions, and being vulnerable in those moments when it is so difficult.

What would you most want to say about your condition to someone who doesn’t have it?
When I am coughing and sound really congested, I promise I am not contagious! When I am actively infectious, I’m too sick to be out in public, anyway. But seriously, whether I’m talking about my PCD, bronchiectasis, celiac disease, or my other immune problems,--I think it’s important for people to realize that, like most with chronic illness, I have some really great days and some really terrible ones. I don’t ever want to be defined by the terrible days. And I don’t ever want to lose my appreciation for the great ones.

What is your favorite health-related resource?
There are so many great websites and online communities out there. Since I mentioned some already, I’ll point a few books that are my all-time favorites: Tracy Kidder’s "Mountains Beyond Mountains," Anne Fadiman’s "The Spirit Catches You and You Fall Down," Roy Porter’s "Blood and Guts," Susan Sontag’s "Illness as Metaphor" and "AIDS and Its Metaphors," and Shannon Brownlee’s "Overtreated."


Past Spotlight Interviews:

- Gabrielle, author of Peanut Free Mama New!
- DinDin moderator of the BirthControl and Am_I_Pregnant LiveJournal Communities
- Megan Oltman, Migraine Coach and author of the blog Free My Brain from Migraine Pain


Who inspired you? Contact us and tell us who we should feature in our next Spotlight Interview.