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.

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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….

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.

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 Boston.com, 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.

#BostonStrong

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.

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.

I wrote an Op-Ed on the gender gap with chronic pain, and it was published in today’s New York Times Sunday Review. From all the patients I follow and have interviewed, I know these issues resonate with so many of your experiences, and I do hope you check it out.

For those of you interested in all of this, I delve into the gender and pain issue in greater detail in In the Kingdom of the Sick.

And speaking of news, I saved the best for last: my father is doing great after his kidney transplant, as is his donor. It is truly an amazing thing to witness, and I will write a longer post about all of this soon. Thanks so much for your support!

If you’ve read this blog for awhile, you know how important I think discussing the impact of chronic illness on relationships is. I’ve followed Barbara Kivowitz’s wise, thoughtful writing about all of this for years, and I am pleased to share that she has co-authored a new book with so many helpful insights, perspectives, and advice. In Sickness As In Health pubs today, and you can find out more about it and the challenges of navigating illness in relationships in the Q&A we did:

1.     Can you tell readers a little bit about how your own journey as a patient, a partner, and a professional led you to co-writing this book?

The short story is that my coauthor and I each lived the experience of being the ill person in our relationships and were stunned by how much the illness subverted our customary patterns of connecting with our husbands, and by how important our husbands were to our healing.  Illness became the third partner, entering into the living room, the kitchen, and the bedroom at will.  And there was nothing out there to help couples learn how to move though the illness experience together from both relational and practical perspectives.  We decided to write In Sickness As In Health so that couples could learn from each other’s stories and get practical advice from experts in different fields.

The longer story is that I, like most healthy people who enter into a committed relationship, never took the “in sickness” and “for worse” parts of the vows seriously.  They were words not predictions.  For others, not us.

However, when I was in my late forties and had been married for fifteen years, I got slammed by a mysterious chronic pain condition.  It didn’t take long to realize that while the pain resided in my body, both our lives were radically dislocated.  As partners, we had been used to being different but equal and sharing the load.  We were ordinary, and had no idea what a gift that was.  Then I went from being an active psychotherapist and outdoorswoman to a puddle of anguish and uncertainty.  My partner, a scientist and technologist had a massive problem he could not solve and devolved to being a helpless witness.  All of my empathy and intuition and all of his analytic abilities could not make the pain go away.

Suddenly, pain was the dominant partner in our relationship and our customary tools and ways of connecting were no longer adequate.  We went from being equals to being patient and caregiver, roles neither of us knew or liked.  For example:  I was used to sensing other people’s needs, not expressing my own, so when I was in the grip of a pain episode and regressed to being a crying child wanting to be held, I had to learn to figure out and boldly ask for exactly what I needed.   Richard, the arch problem solver, had to learn to just “be” with me and not keep trying to “do” for me.  Over time, we had to learn how to reorient our roles to accommodate pain and how to communicate at more honest, deeper levels more quickly because we were both too exhausted to equivocate.

I wanted to hear what it was like for other couples living with illness, so I began my blog In Sickness As In Health.  I heard so many profound stories that I realized there is a book here.  Our book combines couples’ stories, with relationship and practical advice from experts; and hopefully will help readers not only find tools they can use but also a way to feel less alone.

2.     In the book you write you learned that “under extraordinary circumstances, people can rise to the extraordinary; that illness can be a gateway and not an epilogue; and that even in the absence of a cure, healing is possible.”  That distinction between a cure and healing is so important, especially since most people with chronic illness will not receive a cure. In brief, what does that healing look like?

Anne Frank wrote in her diary, “Where there is hope there is life.”  I would humbly add that where there is hope there is healing.  And there is always something to hope for, even when a physical cure becomes unlikely.   You can hope for love and rectification of important relationships.  You can hope for greater spiritual awareness.  You can hope for comfort.  You can hope to help someone else.   You can hope to make one small corner of the world a better place.

Hope moves us towards the light; and in that light we may be able to see something that was hidden before.  And that something can be the piece we need to complete a critical part of ourselves.  I think of healing as becoming more than who we were a moment ago.  And that is always possible.

3.     You write of three dimensions of illness—the crisis, a balancing act, and regaining equilibrium. A common thread among these stages seems to be an ongoing adaptation of roles. What is your biggest piece of advice in terms of how to navigate new roles within a relationship while still maintaining one’s identity?

This is a great question and a complex one.  You could justifiably argue that we change our identities many times in the course of a relationship – parenthood, new career, death of an adult parent.  Identity flexibility in this context is a healthy adaptation and allows us to keep our balance when the tectonic plates under our relationship shift.  On the other hand, you could also say that our identity is our inner fixed point, our immutable sense of who we are, and that nothing diverts it. It serves to ground us wherever we wind up and lends us ballast.

Whichever approach to identity you prefer, one piercing piece of identity wisdom I was given when I first got sick was: “I have pain. I am not my pain.”  You have an illness, but you are not your illness.  Over time, it can become easier to lose your sense of yourself as a being that is bigger than your illness.  You may need to change roles to cope with the demands of your illness, but you do retain that essence of self that extends above the illness.  Think of roles as the cloaks you wrap around your identity to help you accommodate to shifts illness may require of you.

In my situation, I remained an intuiter and my husband remained a problem solver, but our roles quickly became that of patient and caretaker. These roles lasted for a year, and we slide back into them when I have a relapse.  My coauthor suffered a serious stroke, and her husband consciously decided not to take on the role of caretaker but rather to maintain his identity as her adult partner and have aides do the daily care.  There are many permutations, and each couple ultimately figures out its own way.

Role adaptability is how we achieve balance in our relationship, how we complement each other’s capabilities.  Illness can cause imbalance, and we then need to purposefully recalibrate our roles.

Here’s some advice for maintaining a healthy role balance:

• Notice:   pay attention to the cues (in both partners) that tell you things are off track – illness symptoms, stress symptoms, energy levels, irritability, distance, things not getting done
• Talk and Listen without problem solving:  pick a time when you are unlikely to be interrupted and alternate saying to each other these six statements.  Do not discuss.  Only ask questions for clarification:
  • I feel…
  • I fear…
  • I hope…
  • I want…
  • Here’s what I appreciate about you…
  • I love you.
  • Pick one or two changes you’d like to make and offer them to your partner
  • Pick one or two changes you’d like your partner to make and ask him/her to consider them

This is not a linear, problem solving approach to role modification.  In fact it may take time for changes to be noticed.  The intention with this approach is to work as partners, not adversaries, to name and honor the emotions that underlie any role agitation, to describe the changes you can give and would like to receive, and to consciously adapt your roles in as constructive a manner as possible.

4.     Many of the compelling stories you weave into the text involve couples that faced a sudden change in health status. What major takeaways can you give to those couples for which illness has always been part of the relationship? There isn’t the same “before” and “after,” yet these couples face their own unique challenges.

Illness, as those of us who live with it know, is fluid, even capricious.  Periods of stability alternate with periods of relapse.  I had been doing really well for many years when suddenly some damn butterfly in Beijing flapped its polluted wings, and I suffered a massive pain relapse.   As your illness changes, the “before” and “after” become part of the rhythm of your lives.

However, entering a relationship with illness does bring certain challenges.  Intimate questions like what to tell (and show) and when to do so can arise even before you know each other’s favorite ice cream flavor.  Having illness as part of the landscape right from the outset can force authentic communication.   This can be tough, but also a gift.   One couple we interviewed had to deal with one partner’s kidney failure about a year after they first met.  The illness accelerated their connection and forced them to think deeply about their relationship and to speak with powerful honesty about their needs and limits.

I think that for couples for whom illness is present at the start of the relationship, the need for regular communication and clear role definition may be more acute.  If these couples can learn how to connect and partner authentically in the arena of illness, they may be able to transfer that ability to other areas of their relationship.   As one of our interviewees said “Illness can be a great teacher, if you let it.”

And, remember, that we have an illness but we are not our illness.  There are still many galaxies to explore with your partner out of the range of illness.

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Thanks so much, Barbara!

Since we first took our plea to find a living donor for my father public in October, we have continued to be amazed and humbled by the goodwill, generosity, kindness, and support we’ve received. In person, over the phone, and over social media, you have helped us spread the word, encouraged us, and given us hope.

Truly, the outpouring has been incredible—there is a long waiting list of people interested in donating a kidney to my father.

It has been a difficult few months and time has not been our side, but we are so grateful to announce that a living donor match has been found from that list, and a kidney transplant is scheduled for March 12. We cannot begin to express our gratitude to the donor and the donor’s family for this most amazing gift: a second chance at life.

It will be a long road yet, and in the coming weeks, we ask for your continued good thoughts and prayers for my father and our family, the donor and the donor’s family, and the surgical and medical teams who will be caring for both of them. Thank you so much!