Pub Date Reflections, Paperback Release, Spring Events, (and More)

Thank goodness it’s April! While winter often felt endless this year, now that it’s finally spring and the illnesses and setbacks are behind us, I realize I need to post some updates about some great events lined up for the next few months.

Incredibly, a year ago today was the official pub date for In the Kingdom of the Sick. I more grateful than ever for the constant support, encouragement, and enthusiasm for the book and the issues it raises, for the press and publicity it received last spring, and the ongoing interest and opportunities to discuss these issues further. The paperback version of In the Kingdom of the Sick is set to pub this July, and I’m looking forward to more events, posts, and activities leading up to that.

On May 3, my friend Cheryl Alkon and I are presenting a session on writing nonfiction/health books at Grub Street’s Muse and the Marketplace literary conference at the Boston Park Plaza Hotel. It’s a wonderful three-day event “designed to give aspiring writers a better understanding about the craft of writing fiction and non-fiction, to prepare them for the changing world of publishing and promotion, and to create opportunities for meaningful networking.” I always wanted to attend when I was in graduate school and just starting to look for an agent, so I am really thrilled to be able to present.

If you’re in the Madison, WI area, I’m participating in a panel on electronic medical records at the University of Wisconsin-Madison on May 9. It is described as “a free public dialogue exploring electronic medical records (EMRs), a rapidly disseminating technology with great potential impact,” and is free and open to the public.

More locally, I’m participating in the “Connected Patient Panel: Exploring the Role of Online Patient Support Communities, Twitter Chats and Patient Advocacy” for the New England Society for Healthcare Communication’s Spring Conference (NESHCO). It’s on Thursday, May 15, 2014 from 12-1 pm at the Mystic Marriott Hotel & Spa, Mystic, CT.

And up next on the personal side? An update on my C25K training and thoughts on why I really like running—even if I am still a struggling novice.

Thanks again for all your support, and for listening despite the unintended silences!

On 2014, and Transitions

I framed last year’s New Year’s post with the notion of the competing forces of joy and sadness, hope and despair, and guilt and acceptance—so often, it seems like the most incredible and most difficult experiences happen at the same time. I knew going into 2013 that it would be an important year in many respects—my book was slated to come out in April and there would be a lot of events around that, I was teaching an especially heavy course load, and more than any of that, we were watching my father deteriorate and hoping he would undergo a kidney transplant in time to save his life.

So while I knew 2013 had the potential to be a big year in many respects, I couldn’t have predicted just how intense it would be—because even the best things can be incredibly draining, and when so many huge, life-altering things happen at the same time, regardless of how positive some of them are, it is still just intense.

I didn’t know I’d watch my father’s life be saved twice, once through an incredible living donor kidney transplant last spring, and just when we thought we could exhale, a completely unexpected triple bypass this fall. I didn’t know both my parents would end up having surgery at the same time and that we’d spend weeks shuttling between different hospitals and rehabs.

I hoped I’d have a lot of publicity for the book, but I couldn’t have predicted that I’d appear on Fresh Air with Terry Gross or publish an Op-Ed on gender and pain in the NYT, goals of mine I never thought were entirely realistic. (And as an example of just how concurrent everything really was, my Op-Ed came out the very same week of the kidney transplant—I picked up my first copy en route to visit my Dad.)

Some of my Boston-area book readings took place the week the Boston Marathon bombing and manhunt took over my beloved city, which was also the last week of classes, and several of my students had been medical volunteers at the finish line and were going through a lot.  All in all, it took me most of the summer to recover from the physically and emotionally punishing schedule (21-hour days were the norm) of the spring.

So personally and professionally, online and offline, it was a huge year, at times breathtaking and humbling in its richness and opportunity, as well as in its fear and in its losses.

I am grateful. I am starting to exhale. Slowly, I am finding my voice again. And after a year of so many big things, I am very much looking forward to a year of focusing on the smaller joys, and being more conscious and deliberate with my time and priorities.

So many things have changed since the beginning of 2013, and above all else, this is what I carry from into 2014: If you are in the right place, doing the things you’re meant to do and surrounded by the right people, everything will eventually work out—one step at a time.

Belated wishes for a happy and healthy new year!

On Leafy Yards, Summer Play, and Lyme Disease

I am surrounded by ticks.

No, seriously. And I’m not just talking about all the recent media coverage of ticks and Lyme disease, like this New Yorker article on Lyme disease, or the fact that I devoted a chunk of my recent book to Lyme disease, the controversy surrounding the chronic Lyme diagnosis, and the role of social media in this polarization.

There are deer ticks everywhere in my lovely neighborhood sanctuary. I have pulled ticks off my husband’s legs, my daughter’s arms, and have had them crawling across the lens of my glasses. Most of the neighbors on my street have had Lyme disease at least once, and a town social media message board frequently has posts about people getting diagnosed with it, or advice on how to prevent it.

I am so hyper-aware of them that my two-year-old climbed up on my husband’s lap and tilted his head back.

“Daddy, let me check your neck. Ticks really like necks!” she told him. On the bright side, at least I know she is listening and absorbing, right?

We do thorough tick checks as soon as come in and every night. I try to wear long pants or light colors as often as we can, and when she’s wearing dark pants in the grass I tuck them into her socks. I scour her thick blond curls and scalp. We use organic methods of tick control in our yard.

Not everyone who gets bitten by a tick knows it, or gets the telltale bull’s-eye rash. Symptoms of Lyme disease can mimic many other conditions, and there is a lot of debate surrounding the accuracy of the basic Lyme blood test. It feels like it’s everywhere here in New England, yet feels so inscrutable, too.

I am fortunate that we have doctors who have extremely low thresholds for testing for Lyme, and live in a community where it is very much part of the public consciousness. But still, even with information, awareness, and prevention strategies, I feel a little besieged when I step out into our leafy, seemingly peaceful yard. Misdiagnosed and/or untreated Lyme, chronic Lyme, and Lyme’s co-infections are nasty business. I don’t want to run to the doctor every time we have unexplained symptoms like achiness, fatigue, or swelling, but I also don’t want to take chances.

I thought it was a great time to link to the Q&A on chronic Lyme and Lyme’s co-infections I did with my friend, fellow writer, and chronic Lyme patient Jennifer Crystal. It’s definitely worth a read, as is her more recent recap of news coverage over at her blog, Touched By Lyme.

Tell me, readers, do you live in an area with a lot of deer ticks? Is Lyme disease on your mind all the time in these summer months? Have any tips or tricks to share?

Friday Links Round-Up

I have a few new links to share with you.

Jennette Fulda, author of Chocolate & Vicodin, posted a lovely review of In the Kingdom of the Sick. It’s always nice to hear feedback from someone who lives in the kingdom, too.

I took a break from writing about health and science and my newest post over at WBUR’s Cognoscenti is all about education in the digital age.

Lastly, I had the chance to read Whole, Dr. T Colin Campbell’s new book, and interviewed him about the whole food, plant-based diet and disease prevention for WBUR’s Commonhealth. Prevention is incredibly important, but does placing so much emphasis on nutrition as the cause and cure for much of what ails us place unrealistic expectations on those with genetic and/or autoimmune conditions? See what Dr. Campbell has to say, and share your comments or experiences with the WFPB diet over there.

Have a great weekend!

Navigating Work-Life Balance by Asking for What You Need (Part 1)

Picture this: You are young, you are ambitious, and you have big plans for career. Suddenly, chronic illness manifests itself, and everything changes. Now, you’re not simply a novice employee trying to make your mark, but you’re trying to figure out what’s going on with your body, how to hide your symptoms so you don’t look unreliable, and you aren’t sure how you can make all this work.

Sound familiar? The please read Leah Roman’s story below, in her own words, and share your experiences. It’s an insightful and thoughtful look at one woman’s journey in the professional world, and I think many of you can relate to the building tension and frustration in her story.

* * *

In January 2006 I was 25 years old and very busy! That month I graduated with my Master of Public Health degree, started my first “professional” level job in the field, and landed in the emergency room with what I would later realize was the initial flare up of my chronic illness. I had swelling in my face and neck. I had hives. I had started having strange reactions to foods. I had a low-grade fever. In short- I felt terrible. Convinced it was simply an allergic reaction; the doctors pumped me full of Prednisone and Benadryl and sent me on my way.

I remember feeling paralyzed with anxiety during that time. How would I tell my new boss of two weeks that I needed to take a sick day? How would I ask her for the hours of sick time necessary to accommodate the follow-up appointments and tests to address my symptoms that simply would not go away? What if I eventually got too sick to work? I was single and needed to work full-time to keep my health insurance.

Since 2006 I have been operating with a “working diagnosis” of Undifferentiated Connective Tissue Disease (UCTD) to account for my joint pain, fatigue, sun sensitivity, and rashes. The chronic fevers, flushing, and food sensitivities remained a bit of an outlier until two years ago. I was referred to a talented autoimmune dermatologist who finally attributed that group of symptoms to a mast cell activation problem. The way she explained it was that my mast cells (the cells in your immune system that make histamine) “behave badly” and react to things they shouldn’t (e.g., food, heat, and sun). While there remains some debate about which symptoms are attributed to which condition (and whether I meet all the criteria for each), I have responded well to the updated cocktail of rheumatologic and antihistamine medications.

The first few years of work with this chronic illness were the hardest. Being young and naïve in the workplace, I did not always know my rights in terms of privacy. I did not always know how much to share and how much to keep private (especially when asked a direct question about my health by a supervisor). When I first got sick, I only ate food that I brought from home (due to my new food reactions). Several co-workers, to my face and behind my back, speculated that I must have an eating disorder- what else could explain my weight loss and refusal of catered or communal food?

In Laurie’s new book In the Kingdom of the Sick, I felt especially connected to the section about the workplace. Chronic illness symptoms do not always meet the criteria for a disability. Therefore, you may not be eligible for a formal accommodation. As she also points out, one of the major challenges is that your symptoms are often inconsistent- you may need an accommodation one day and not the next! And what about asking for accommodations for diagnoses that are unknown or tentative? Many of us wait years and years to get the correct diagnosis.

I found that I needed accommodation around issues that did not seem “normal” to my co-workers. For example, early in my career I declined an invitation to a staff sporting event being held on a near-by athletic field. Since it was being held outdoors in July (without shade), I had to decline. I declined because my extreme sun sensitivity can trigger fevers, rashes, and full-on flare-ups. Although I tried to explain the severity of my situation, I was told by my supervisor “You better start going to these events or people will think you are not a team player.” I received similar “warnings” over the years when I declined work dinners or parties where I was unable to eat the food and/or too fatigued to stand all night at an event after working all day.

I think it can be difficult for those without chronic illness to understand the intricate level of planning it can take to navigate a “normal” day at the office. For example, I have lived with low-grade fevers for seven years. When I shop for work clothes, my focus is primarily on finding layering options that can allow me to get down to short sleeves at a moment’s notice if my temperature begins to rise. I often “pre-treat” myself with Tylenol prior to an important meeting to ward off a fever and its resulting flushing. The experience of severe chronic flushing at work silenced me during meetings for many years.

I also spend a lot of time protecting myself from the various “hazards” in my physical environment. Having spent much of my working life in Boston and Philadelphia, I have worried about the health of several old buildings which have housed my offices. Some spaces have had a history of mold or water damage. How does that environment affect my poor easily activated mast cells? I have had reactions set off by colleagues sitting in close proximity while wearing strongly scented perfumes or lotions. And then there is the art of dodging co-workers who insist on coming to work sick and putting colleagues who take immune suppressant medications at an unfair risk for illness.

And finally, while it is exciting to be invited to present and attend conferences…work travel can be treacherous with a chronic illness! From the physical strength needed to maneuver your suitcase, to trying to stay on the eating-exercise-medication schedule that keeps you in balance…it can be exhausting. I once traveled to Missouri to co-facilitate a training. At the last minute, I discovered that I could not eat the meal options being provided by my host organization. As a result, I was up at 5am to visit the grocery store to purchase all the “Leah-friendly” food I would need to survive for the next two days.

To be fair, for each challenge and difficult situation that I faced in the workplace, there was a sensitive friend/co-worker/mentor/colleague that I met in my offices and travels as well. These people grabbed my suitcase and hoisted it into the overhead without asking; they sat apart from the group just to have lunch with me in the shade; they strategically steered colleagues to choose a restaurant where they knew I had safe food options; they did not ask why my schedule was a bit more flexible that everyone else’s. I am incredibly grateful for the kindness and friendship of every single one of these people.

I have spent the last seven years balancing these challenges and victories in an ongoing debate about my ideal work situation. Finally, I approached a turning point in August 2012.

Want to see how all of this resolved? To be continued….

Chronic Illness, Employment, and Kickstarting Your Career

One question that has come up in several In the Kingdom of the Sick posts—including this great Q&A over at DiabetesMine—is how disability rights have influenced chronic illness, particularly in the work place. Navigating chronic illness as a working professional is something I talk about extensively in my first book, Life Disrupted, and is something I’ve posted about here, too. I am not surprised I’m getting lots of questions about illness disclosure, the Americans with Disabilities Act, and how to balance health demands with professional obligations, since chronic illness can have such a significant impact.

A lot are specific to employment in young adults with chronic illness: how do you begin a career under these conditions? I know how frustrating it can be to feel like everyone around you is moving towards something when you feel like your body is falling apart, and so are your aspirations. There are so many trade-offs, compromises, and sacrifices to sift through.

With this in mind, I am really excited to kick off what will be a three-post series this week all about careers and chronic illness. This coincides nicely with the launch of my friend Rosalind Joffe’s new coaching program, Kickstart Your Career. It’s designed specifically for patients in their twenties and thirties, and comes from someone who’s walked the walk—Rosalind was a younger adult herself when she was first diagnosed with multiple sclerosis, and she’s spent years helping patients with chronic illness stay employed.

So click on over, and then be on the look out—tomorrow, I am posting the first of two posts from a guest blogger who has made these same compromises and sacrifices in her professional career. Several interviewers have asked me how I balance my career, health, and family needs and the short answer, partly in jest, is that lately, I never sleep. The longer answer is that I am able to do what I do because as a writer and an instructor, I have some built-in flexibility. I can write at 1am or 4am if I need to, I can comment on papers electronically from the hospital bed as well as I can from my desk, and I am not on campus five days a week. I make a lot of sacrifices to keep everything on track, but I can choose to do that because I also have a supportive partner and work for an extremely accommodating and encouraging institution.

Not every profession lends itself to flexibility so naturally, and not every institution can be as accommodating with scheduling. As such, I am excited to share Leah Roman’s journey, and know it will resonate with so many of you out there.

One Week in April

I hadn’t intended on last week’s silence, but it was an intense time up here in Boston. In the midst of much sadness, shock, and anxiety, writing about anything else just didn’t feel authentic.

So much has been written about the Boston Marathon bombings and subsequent manhunt and lockdown, so instead I offer this powerful, poignant video from, Five Days in April. It is stunning and sobering, and absolutely worth a view.

One week out, what I can say is how proud I am: Of my city and all the many ways its people have cared for each other, and showed their love of country; of my students, some of who were medical volunteers at the finish line when the bombs went off, who have taken care of each other and handled this situation with grace; of all the doctors, nurses, EMTs, and health care providers whose skill, preparation, and precision saved so many lives; of the many branches of law enforcement who worked together to keep us safe, and of the crowds who lined the streets to show their gratitude.

And as a writer, yes, so proud of my hometown newspaper the Boston Globe, whose reporters, editors, photographers, and staff covered an emotional and rapidly changing story with grit, integrity, and responsibility.


Pre-Pub Date Announcements and Excitement

It’s hard to believe pub date is almost officially here! Some exciting pre-pub date links and announcements to share (and I promise a return to more regular posts and content soon):

Friday, the Wall Street Journal published a thoughtful and comprehensive review of In the Kingdom of the Sick. I had no idea they were reviewing it, so it was a most welcome surprise.

Today was a day of double duty for me. I had a piece on the potential consequences of the new DSM-5 diagnosis of Somatic Symptom Disorder on women living with pain published on WBUR’s CommonHealth. I was also incredibly lucky to be at WBUR, Boston’s NPR station, to tape an interview with Terry Gross for Fresh Air. It looks like the segment will run later this week, but I will confirm the date and details as soon as I can.

The virtual book tour is moving along nicely, and I am so grateful for all the people who are participating. Want to win a free copy of In the Kingdom of the Sick? Click on over to this great Q&A Allison Nimlos did at DiabetesMine and enter to win in the comments section. Allison asked some really insightful questions!

Edited to add: my undergraduate alma mater, Georgetown, published a nice article where we discussed both my books and chronic illness as a public health issue. Hoya Saxa!

Stay tuned for lots more exciting news, reviews, and events tomorrow and in the coming days—and remember, tomorrow is the day you can officially purchase the book online and in stores.

Virtual Book Tour: It Takes a Village

I can hardly believe that after all this time, the April 9th pub date for In the Kingdom of the Sick is practically here! There are all kinds of great posts, interviews, and other events in store next week—I really can’t wait to share them.

I am just as pleased to share this week’s virtual book tour events. This book is incredibly research-intensive (I joked to my father that the Bibliography was my prize achievement), but the patient stories are what draw the research out and advance it. To that end, I was so lucky to be able to interview some incredibly wise, insightful patients, physicians, and advocates. Their perspectives added so much to be book, and I was particularly interested to see their thoughts on the final product.

One such person is intrepid health blogger Duncan Cross, who reviewed In the Kingdom of the Sick this week. He writes, “You need this book because it is the best or only book that captures the full social picture of being sick in America.”

His review is comprehensive, and towards the end, he writes, “Now I want to say what it [the book] could be: the catalyst for a new community of people with chronic illness in America. Laurie feels (as do I) that for too long patients have been segregated by their diagnosis, when so much of what we endure and aspire is shared, is universal to the experience of illness. Too many of our dialogues and discussions begin with our diagnosis — as if Crohn’s and lupus and cancer can’t talk to each other. That keeps us from getting anywhere, from social progress — there’s a reason healthcare reform was a bust. But if we instead start from this book, from what is shared and universal, there’s so much we can do together.”

And that takeaway means so much.

Speaking of research and interview voices, a review up at How To Cope with Pain had this to say:

“As I finished the book, I had the image of Laurie as a master orchestra conductor. Laurie was able to lead all of us in creating a beautiful whole. A few notes of piano are nice, as are a violin melody. But taken together, a symphony can be moving and inspiring. “

And so more than ever, I am grateful for the people who gave me their time and insights as I wrote this book, and to all the writers and researchers before me whose work was so helpful.

Battle for Grace

It’s already a big spring for books about illness. I’ve written about The Last Best Cure and In Sickness As in Health, and now I’d like to introduce you to Cynthia Toussaint.

In the course of writing about gender and pain for In the Kingdom of the Sick, I interviewed Cynthia Toussaint several times. A former dancer whose life was turned upside down when a ballet injury turned into a serious, debilitating pain condition, Toussaint is the founder of For Grace, a nonprofit for women in pain. Her experiences having her pain dismissed and her suffering ignored, as well as her incredible story of unconditional love, make for a compelling read in Battle for Grace, her new memoir. In fact, Battle for Grace launched on Maria Shriver’s Architects of Change site.

Here is some more official information about Cynthia, as well as Battle for Grace:

“Cynthia Toussaint is the founder and spokesperson of For Grace (, an organization that fights to ensure the ethical and equal treatment of all women in pain. She has fostered two California Senate hearings on thunder-treatment of and gender bias toward women in pain and gave testimony at both events. Toussaint has appeared on more than 75 local and national television shows and featured in over 200 news stories, including ABC World News with Diane Sawyer, PBS, Discovery Health, The Learning Channel plus the New York Times and Newsweek, among many others. A recent media highlight was an invitation from Maria Shriver to launch Battle for Grace on her Architects of Change website. Toussaint lives in Los Angeles, CA, with her beloved John…

Toussaint takes readers on an extraordinary 30-year journey where a crippling mystery illness triggered uncontrolled violence that almost destroyed her. The story begins with a minor ballet injury at age 21 that grew into the chronic pain disease, Complex Regional Pain Syndrome. Her pain went undiagnosed for 13 years as doctors told her it was all in her head. Bedridden for a decade, she was unable to speak for five of those years and was often reduced to the violence that attacked both herself and John Garrett, the love of her life. John has remained at her side for 33 years. She lost the career she’d dreamed of as an actor, dancer, singer, the chance to have a child and very nearly John as well…But Cynthia somehow stuck with it, refusing to be a victim. In her battle to survive, she’s taken on the role of activist and aggressively challenges HMOs and pharmaceutical companies that put the unholy dollar ahead of patient care…”

I am grateful for Cynthia’s insights in my own book, and pleased to share the details of her new memoir.