The Evolution of a Gluten-free Thanksgiving

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This is the week of food posts, no? This is also the first time I’ve had any real interest in the actual meal part of Thanksgiving in years. We’re hosting it, and even before we pick up the turkey and other fresh ingredients next week our pantry and refrigerator are already getting full…and I’m really excited to prepare it all.

Honestly, not being able to eat a lot of traditional holiday dishes has never been a big deal to me. I ate my plain turkey, my peas, and called it a day. I didn’t compare gluten-free stuffing recipes or gluten-free pie ingredients, and I didn’t ask for or expect special dishes. The stuffed mushrooms I always make happen to be gluten-free, and even though I’m now dairy-free and they’re no longer safe for me, I make them anyway—they are a crowd favorite.

From feedback I’ve heard from other celiacs, it seems like the hardest Thanksgiving meal is the first one after diagnosis when you’re still getting used to the gluten-free diet and missing favorite foods. I got diagnosed right before Christmas and spent that Christmas in the hospital, so I didn’t have option of acclimating my condition to holiday traditions—clear liquids are neither festive nor gluten-y. By the time the next Thanksgiving and Christmas rolled around, I was so focused on keeping my lungs stable and my body out of the hospital that what I ate seemed inconsequential. I get the frustration or even anger people may feel when they need to give up certain foods, but for better or worse, that hasn’t been my experience.

Besides, going GF made me feel a lot better, and that trade-off was always worth it.

And in a way, not much has changed. Considering last Thanksgiving my jaw was frozen shut with an infection and I could only have broth through a straw, I’m happy just to be able to chew this year. I’ve always been a lean protein and green vegetables kind of girl, and that remains true on Thanksgiving. I know there are all sorts of approaches in terms of eating gluten-free and it’s just a matter of preference. Mine has always been to focus on what is naturally gluten-free and explore those possibilities. It’s not the only way, but it’s my way, and that’s the spin we’re adding to the traditional family menu this year.

I want my mother’s famous stuffing at our table, just like I want the derby pie my husband loves, the ricotta pie my grandmother makes, and the buttery potatoes my brother considers a deal-breaker. I want everyone to have their favorite things.

But I’ve started to make an effort to have my favorites, too. I don’t miss or resent what I can’t have but I do want to share what I can have, so we’re adding small touches to the meal. We’re making the roasted Brussels sprout hash we both love, and we’re adding cranberries and toasted almonds. We’re making naturally GF cornbread to go along with the rolls. There will be no GF dessert option because I don’t eat dessert, but there will be plenty of coffee and perhaps the port that several of us like to drink.

At the end of the day, what I can or can’t eat is much less important to me than being healthy enough to be at the table and enjoy my family. I said it last year but it’s just as true for me this year—it’s the people at the table who create holiday memories, not the food.

(I do hope they like the roasted Brussels sprouts, though!)

Looking for ways to customize your gluten-free Thanksgiving? I’m not much of a baker so don’t listen to me. Trust Shauna at Gluten-free Girl, who has compiled a list of sure-fire recipes.

Celiacs aren’t the only ones who face challenges in the holiday season—diabetics and people with other conditions that mean dietary restrictions have a lot to juggle, too. There are several people with diabetes in my family and lots of friends with food restrictions, and I know it can be a tricky time for them, too. Check out the holiday sweepstakesover at Diabetesmine.com. Share your diabetic holiday tips and strategies and you could win a ton of cool prizes.

Stay tuned for a post that’s less about what we eat and more about the giving thanks part of Thanksgiving…

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Operation Frontline: Healthy Meals for Less

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While we’re on the topic of gluten-free meals and cutting costs, here’s a Boston Globe article I wrote about eating well in a down economy and Share Our Strength’s Operation Frontline, a nutrition education program for low-income families. Check out the article for tips on healthy eating on a budget, but more than that, check out Operation Frontline—it’s a great program and its mission of feeding families well for less is an important one, especially these days.

Need more reading? A fresh edition of Grand Rounds is up at Dr. Deb’s blog.

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Gluten-free Eating on the Cheap

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I’ve been working on a project these past couple of weeks that has forced me to pay even more attention to the cost of food during these tight economic times. This article on what a modern depression would look like suggested a possible upswing in eating fast food and starchy, processed food because they are cheaper, and I couldn’t help but think even more about the future of healthy eating.

As a patient with celiac disease, I’ve grown used to the fact that eating gluten-free is expensive. Whether it’s dining out or cooking at home, there’s no way around the fact that many of the cheaper items out there are off-limits.

The trade-off, of course, is that fresh and/or whole foods are healthier, and my meals are higher in fiber, lower in sodium, and much more diverse than they would be were I not gluten- (and dairy) free. While sticking to this lifestyle will never be inexpensive, there are definitely lots of things GF shoppers (or anyone with a limited diet) can do to maintain their diets without breaking the bank. Here are some strategies to keep in mind as budgets shrink and costs increase—none of them are earth-shattering and they certainly aren’t the only ones out there, but they are things I think about and try to practice regularly:

1. Personally, I try to stick to foods that are naturally gluten-free, rather than buying specialty pre-made items (bread, pizza crusts, pasta, etc) that approximate products with gluten and cost more. I’d much rather buy a bulk bag of brown rice or risotto and have that with my stir fry or as a side dish. Same thing with polenta—it’s cheap when you buy it in bulk and is really versatile in terms of spices and mix-ins.
(Note: I’m not much of a bread/baked goods kind of girl, but I know celiac patients get good results with breadmakers, and that it’s cheaper than buying pre-made GF bread).

2. We like to make soups and turkey chili a lot, and buying dried beans and lentils makes a lot of sense if you’re going to use those ingredients often. Certainly store-brand canned beans aren’t too expensive, but they can have more sodium than I’d like and they’re still not cheaper than dried beans. (Just make sure you give them plenty of time to soak. The infamous “crunchy” turkey chili of July 4, 2008 taught me that lesson.)

3. Plan meals around vegetables in season—not only does it make for more creative meals but you’ll spend less. If your recipes call for vegetables not in-season, frozen vegetables are more affordable and have many of the same health benefits as the fresh kind.

4. Make the most of every ingredient you buy and purchase items that can work in several different meals/recipes. For example, we’ll buy a whole chicken when we see it on sale and roast it, using some meat for that night’s meal and setting aside portions to use in soup and on salads later that week. Then we take what’s left and make a huge pot of chicken broth out of it. We use some of it for soups that week, and depending on how much we make, we freeze containers of it to use when we make risotto or polenta and want the depth of flavor broth adds over water. (You can find store-bought broth that is gluten-free but it’s often too salty and I really prefer the taste of homemade broth.)

5. Lastly, it sounds obvious, but pay attention to sales and specials. If you’ve planned out meals with one type of protein and another is one sale, think about substituting. And of course if you see GF specialty items or proteins on sale, stock up on them and keep them in the freezer. Take-out can really add up and is often limited in terms of GF-availability, so give yourself options.

While they are not major changes they can really make a difference for anyone dealing with dietary restrictions. If you’re looking for more ideas, Gluten-free Mommy has a great post on eating gluten-free frugally.

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Staying Employed When You’re Chronically Ill: Interview with Rosalind Joffe

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It is my pleasure to host today’s stop on the virtual book tour for Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!. I first got to know co-author Rosalind Joffe when I interviewed her for my own book, and I am excited to be a part of this tour—this book is incredibly informative and should be a go-to resource for anyone trying to navigate staying employed in the face of chronic illness. My interview with Rosalind follows:

1. I know you must get this question a lot, but it’s an important one—why did you ultimately decide to write this book?
RJ: I’d seen in my own life and from my client’s experiences that there is a fair amount of pressure for women with chronic illness, particularly married mothers, to stop working. Since I had found that continuing to work as much as possible when possible was essential to my own health, I wanted to encourage those who view this as I do by arguing against some of the prevalent myths.

2. Why the focus on autoimmune disorders in particular?
RJ: Primarily, it helped us narrow our focus. All of the issues we discuss in the book are relevant to any chronic disease or condition but it was too difficult to try to leave it that broad. It was easier to narrow it to since autoimmune diseases affect women 4 times as often as men and, usually between ages 25 -40 (prime childbearing and career building ages). It’s this confluence of factors that make the situation so problematic for women. Finally, both Joan (my co-author) and I live with auto immune diseases which made it easier to speak from and incorporate our own experiences.

3. What are some of the biggest fears or misconceptions women have about the workplace and chronic illness?
RJ: I think that women and men worry that they’ll be marginalized if others know that they have an illness. The reality is that it can happen regardless of how savvy you are. Women also worry that they cannot live with active chronic illness, have a demanding career and raise a family. Here, too, the reality is that it is very difficult and requires a lot of planning and taking a long view of situation, thinking strategically. Finally, many young women don’t think enough about what it takes to balance family and career when they’re choosing a career and that becomes even more difficult when illness adds into the mix. I suggest thinking carefully about your career options when you get a diagnosis and don’t leave it up to chance. I wish I had been smarter about this early in my career.

4. You write about developing a “warrior spirit.” Can you discuss what that means, and why it is so relevant to the issues of employment and living with chronic illness?
RJ: Actually, I worried about that phrase because I didn’t want the term to be interpreted that women should be more like men. It’s a term I use with my clients because I think that chronic illness can leave you feeling as if life is out of your control and can encourage passivity, particularly when you spend so much time seeing doctors and healthcare providers! I’m not suggesting that you become more combative. Rather, I am suggesting that you think for yourself, you seek options even in the face of opposition and continue to build your ability to be resilient.

5. A lot of my readers are younger adults who are just entering the workforce and trying to carve out a career path with the added burden of chronic illness. What advice would you give to the youngest members of the workplace in terms of things they should consider/look for in a career or workplace environment?
RJ:That’s a great question. First, think long and hard about what you love to do, even if you think it’s not your greatest strength, because that interest and passion will keep you going for the long haul. Consider other aspects of this career and how it fits your values and interests in life. When you think about a career choice that requires additional education or training, try to work in that field in some capacity so you can see what it’s like up close and personal before diving in. Choose a career that allows for as much flexibility as possible so if one job turns out to be a poor fit, there are other places where you can apply your skills. Most importantly, you will always be able to find work if you are good at what you do and bring value, so make it your mission to be the best you can be. You might not be able to work at the pace you would most like all the time or make the salary you dream of, but if you plan strategically, you will be able to continue to do something that has value and feels meaningful.

6. Lastly, you’re a patient yourself, and through the years you’ve faced many of the challenges and setbacks as your readers. What has been your biggest challenge in terms of staying employed? Would you say you’ve reached an ideal balance now?
RJ: That’s tough because there were so many challenges to staying employed. I didn’t think about my career in the long term early enough and I was always trying to make a job fit to my needs. My health waxed and waned (I developed several autoimmune diseases over the past 30 years) so it became increasingly difficult to plan. If I’d had a crystal ball 12 years ago when I had an ileostomy (curing the ulcerative colitis) and then went on MS medication (that slowed down the MS progression dramatically), I probably would have taken a path that would have left me more financially secure. But I’ve been lucky to find work that I really love doing and that I can do. No doubt about it, working for myself at home has made it much easier to keep working and I hope to keep doing this for a very long time.

Thanks so much, Rosalind, for writing this book and answering my questions!

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Just a quick reminder, while we’re on the topic of reading, that another great (and entertaining) edition of Grand Rounds is up at Musings of a Distractible Mind. Check it out!

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Practicing Professionalism

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It’s been a good week. The election is finally over, the results were met with grace and dignity by the losers and optimism by the winners, and hopefully we can all move forward.

(Plus, it’s Friday, and it’s officially been November for a full work week. Normally this would be a non-issue, but I realized last night I haven’t been acutely ill yet this month. I honestly can’t remember a 7-day stretch in November where I have been able to say that. I’m going to ignore the tiny little voice that says “don’t jinx this!” and hope instead this points to a better “plague season” for me.)

But the other reason this has been such a good week is this weird confluence of personal and professional interests that has taken place over the past few days. In my classes we’ve been reading a review article published a couple of years ago in the New England Journal of Medicine about developing professionalism in physicians. Initially, I chose the article because it is a good model for the type of evaluative research writing they are doing right now and while it is certainly useful for that, the content of the article itself has been even more beneficial.

We spent a good portion of class discussing the three concepts deemed necessary for developing professionalism: setting expectations, providing experiences, and evaluating outcomes. I was surprised by how readily they responded to these ideas, commenting on preceptors and colleagues in clinical settings who have been role models for them and instances where they really learned from someone else. And of course, they commented on the moments when the opposite happened, when they received little instruction or explanation from the people charged with assessing and training them.

They are thoughtful and passionate about what they do. They recognize that the best way to learn is by doing, and that sometimes the “doing” doesn’t go smoothly and certain doesn’t come easily. But they also realize that “doing” must be accompanied by knowledge, observation, and input from people with more experience…and that people who have authority also have accountability. Discussions like this remind of the privilege it is to see medicine from the other side. My personal experience as a patient is not something that comes into the classroom, but of course it is something that shapes my perspective.

With a week’s worth of discussions swirling around in my brain I sat down this morning to catch up on the latest doctor-patient column in the NYT’s Well blog. This week’s post, A Positive Approach to Doctors in Training, discusses the rigors of the intern experience and the “culture of fear and negative feedback” that permeates medical education. Could I ask for a more relevant topic to read?

Dr. Chen explores the negative reinforcement so common in the training doctors, and the tendency towards focusing on surviving, rather than improving, as a result. (And of course, the backdrop of last night’s Grey’s Anatomy, where the competition over surgical skills and opportunities took a somewhat macabre twist, added to my interest in this article).

But as noted in the article, research suggests positive reinforcement, long a staple in other professions, may have an important role in developing professionalism in doctors. (Obvious, right? But practice and theory can be far apart…). Of course we need to hear what we’re doing incorrectly so we can avoid making a (potentially serious) mistake again, but as published research, common sense, and several classrooms’ worth of future health care professionals seem to agree, knowing what we’re doing right is incredibly important, too.

All of this got me thinking about the practice of teaching in general. Setting expectations (syllabus, grading criteria, classroom policies, etc) and providing experiences (drafting, workshops, model writing, in-class prompts, etc) are easier to handle than evaluating outcomes (at least for me). I relate to my students’ concerns and experiences and I realize my responsibility in this. It can be an awfully difficult line to draw between giving comments that will help a writer improve (constructive criticism) and giving comments that ultimately deter or de-motivate a writer. I’m always conscious of highlighting moments in the text that work well, but at the same time I don’t want to gloss over moments that aren’t working but have potential.

And I am conscious of their consciousness—just as much as they don’t want pages full of red marks, they don’t want to only hear what they’re doing well, either.

One thing that has really emerged from the week of confluence is the reminder that in any kind of teaching environment, accountability works both ways. I want respect and hard work from my students, but they deserve all that from me too, whether it’s the way I choose to comment on a weak paper or the way I respond to their questions in class. This makes sense in the classroom and of course it makes sense in the hospital, too.

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Monday morning links–Election info and the hazards of the diabetic test-taker

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If you have chronic illness and read this blog, then you know why I think the health care vote is so important. (Check out my post on the female vote and health care for a quick refresher). Want more information? Check out this video on health care and the next president at vote.chronicdisease.org. Its message is compelling (and it also happens to be star-studded.)

While this next link doesn’t concern the election, I read this article this morning and had to link to it. As reported in today’s Boston Globe, a young woman with diabetes who was taking the GRE had her insulin pump mistaken for an iPod and was also told she couldn’t bring her testing kit and juice into the testing room. Check out the full story for details.

I can relate–it was a cold day in early November just a few years ago when my GRE proctor refused to allow me to bring my inhaler into the exam room with me (I was acutely sick at the time). Not the same situation, I realize, but certainly a similar fear of cheating that permeated the experience and overrode medical concerns.

Anyway, don’t miss your chance to cast your vote!

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Narrative Medicine: Better Doctors, Better Patients?

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One of the best classes I’ve ever taught—and by “best” I mean the most interesting, engaging, and rewarding, the class I learned the most from as an instructor—was a writing course for pre-med and health sciences students. It was called “Constructions of Health in Contemporary Literature” and it contained various essays from physicians, writers, and patients about illness, healing, social justice, etc. I was so fortunate to have the chance to read these types of works with a class of future health professionals and see the way they responded to these personal stories and how their readings might inform their identities as they develop their careers.

Of course, physician-writers are hugely popular outside the classroom; the best-selling work of authors like Atul Gawande and Jerome Groopman are probably the most well known examples of this. Narrative medicine is an important topic (now more than ever, I would argue), which is why I was so pleased to come across Dr. Pauline Chen’s article on combining literature and medicine on Tara Parker-Pope’s Well blog in the New York Times.

Among other things, the article discussed how incorporating literature and writing workshops during residency can help doctors view patients with more empathy and compassion—and by extension, it can help them provide better care. It is no easy thing for the well to be able to understand what it feels like to be sick, and no insignificant thing when doctors can do this. As a patient, I am encouraged by programs that incorporate literature and medicine and as a writer I am appreciative of the value others see in studying these works.

Perhaps it is from the dual point of view that I see another strong benefit to narrative medicine beyond fostering more empathy and compassion in doctors: I think it makes us better patients, too. It is useful for me to see the other perspectives, the thoughts and fears and reflections of the people charged with healing (not curing) me. I hope it makes me more understanding and more open-minded, too.

Between writing about illness, living with it, and teaching it for a living, I’ve done my fair share of reading. Here’s a short list of some of the best examples of both narrative medicine and all-around riveting health writing I’ve found:

A Life in Medicine: A Literary Anthology, edited by Dr. Robert Coles and Randy Testa. I’ve used this book as a basis for undergrad and grad classes and have even given it as a gift. It’s a great mix of classic and contemporary pieces.

The Tyranny of the Normal: An Anthology (Literature and Medicine, Vol 2), edited by Carol C. Donley and Sheryl Buckley. An interesting combination of scholarly and personal essays and poetry on illness and disability.

Complications: A Surgeon’s Notes on an Imperfect Science, by Dr. Atul Gawande.

How Doctors Think, by Dr. Jerome Groopman. I loved this book so much and it made me think about so many things that I quoted it in my own book when discussing the doctor-patient relationship.

Mountains Beyond Mountains: The Quest of Paul Farmer, a Man Who Would Cure the World, by Tracy Kidder. I was originally assigned this book in graduate school, where the obsession began. It is one of my favorite books of all time, and one I recommend to students, family, and friends every chance I get.

The Spirit Catches You and You Fall Down, by Anne Fadiman. An utterly engrossing and emotional narrative about one family’s quest to cure their daughter and what happens when Western medicine and other cultural ideals and norms clash. I’ve used excerpts of this in classes and recommend it to everyone.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sontag. Every time I read it and teach it I come away with something new.

Have you enjoyed any of these titles? Have any more to suggest? I am always on the lookout for new material!

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Speaking of writing about medicine, another fantastic edition of Grand Rounds is up today at Emergiblog. Check it out!

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Politics, Sports…and Chronic Illness?

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I try to stay on point in my writing on this blog, exploring universal issues of living with chronic illness and discussing new research, policy, or insights from other writers and bloggers. But sometimes, personal interests and public issues intersect, and there’s been a lot of that happening lately.

I don’t usually stray into political leanings, but when it’s an election year and presidential health care policies have the potential to impact so many lives, how can I not write about the importance of the female vote when it comes to health care?

Similarly, I don’t usually write about sports. Now, I’m by no means an athlete—remember, I’ve broken fingers typing before, so you can imagine what an awesome combination me and a basketball court made—but I grew up with two older brothers so sports have been part of my life for as long as I can remember. I mean, I went to hockey, baseball, and football games before I was old enough for nursery school.

Plus, when you live in Boston, you can’t escape fan fever. Clearly Sunday’s game was a tough one for Red Sox nation, (though the Monday night football with the Patriots cheered us up somewhat) and the series with the Tampa Bay Rays was an emotional rollercoaster.

Why bring up a painful loss? Because while rooting for my team, I had the chance to watch Rocco Baldelli hit for the Rays. This spring, after a lot of tests and some tough symptoms to piece together, Baldelli was diagnosed with mitochondrial disease, which makes it harder for his cells to recover from even minimal exertion and can cause excessive fatigue.

Since Life Disrupted published this summer, I’ve heard from many patients and learned about many conditions I didn’t know much about, including mitochondrial disease. Despite our vast differences in symptoms and body systems affected, I could relate to a lot of what I learned, especially regarding the difficulty in diagnosing it and the fact that since it often manifests in children, it’s even harder to identify in adults.

(I had immediate flashbacks to doing homework for grad school while waiting in my pediatric specialist’s office, flanked by toddlers with croupy coughs and stacks of Highlights magazine.)

So at first, I was interested to see Baldelli because anytime a rare disease can get national exposure and awareness like that, it’s wonderful—good for general knowledge and education and hopefully, it’s also good for fundraising and research goals too.

But on a deeper level, watching Rocco’s at-bats reminded me of so many things I normally talk about on this blog: adjusting to new symptoms, negotiating setbacks, and balancing professional ambition with personal health needs. So many of us have had to be creative about our employment situation, from finding ways to work from home to switching jobs so we’re in a more flexible corporate culture. We seek ways to be successful and to contribute even when our bodies don’t work the way we want or need them to work.

Now think about Rocco’s situation, and just how much success and positive contribution depends on athleticism and peak physical condition. And think about trying to compete at his level when his body can’t do the things it used to do, the things he needs it to do. Talk about an adjustment.

In what I am sure will be an ongoing process with many revisions, Baldelli and the Rays are figuring out how to keep him in the game without exacerbating his condition. He doesn’t play in every game, and the time to rest and recover appears to be working since he had no problem knocking out some hits in a clutch position.

I’m glad to see that his diagnosis didn’t automatically mean retirement for Baldelli, and glad to see the Rays are working with him. After all, if there’s room for chronic illness in professional baseball, there’s some hope for everyone else trying to balance work and illness too.

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In other news, a new edition of Grand Rounds is up at Pallimed—check it out!

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Women, Health Care, and the Presidential Election: Why Our Vote Matters

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In an election where economic woes dominate the conversation and health care platforms are discussed in terms of polarity rather than specifics, it is easy to see how the importance of the female vote when it comes to matters of health is undervalued.

But it shouldn’t be. After all, women make two-thirds of health care decisions and are consistently health care voters. They also constitute a key swing vote—60 percent of undecided voters are women.

In advance of the upcoming election and on the eve of the next presidential debate, the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.

The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues.

Candidates, are you listening?

What’s more, the target voter, the independent female voter (I count myself in this population), is especially focused on health care—65 percent of female voters say it is the major or one of the major issues in the presidential election.

While I found all of the results interesting, as a young woman, an independent voter, and a patient with multiple chronic diseases, some of the ones highlighted in today’s press conference call were especially resonant. Not only did 83 percent of voters express familiarity with chronic disease, indicating a marked increase in awareness of chronic disease, but when given a long list of items on a health care agenda, treating and preventing chronic disease is at the top of this list. That means chronic disease factors more prominently than such hot button issues as electronic medical records or medical malpractice.

Policy makers, are you listening?

As I know all too well, managing health is a costly endeavor. These days I flirt with postponing appointments and tests to save money, and spend more time paying and filing medical bills than I do any other kind. The fear of losing existing health insurance and the rising cost of health care that is the number one issue for me in this election—indeed the number one issue in most of my personal and household decisions—is also an especially intense concern among younger female voters polled(defined as women under 50).

So I can claim solidarity with these likely voters on so many levels: chronic disease is the dominant issue in health care (remember, 130 million Americans have at least one chronic condition and it costs us $1.1 trillion annually in lost productivity); like most likely voters I am insured but not confident in my coverage; and like 92 percent of voters, I believe that early diagnosis, education, and prevention of chronic disease will make a difference.

Despite the recent crisis on Wall Street, increasing energy prices, and so many other strains, many voters polled supported increasing access to health insurance to all Americans even if it meant raising taxes, even if those dreaded words “federal government” were involved. Since access to insurance means access to education and prevention, that says a lot about our priorities.

Health care reformers, are you listening?

Most voters surveyed didn’t think health care is enough of an issue in the presidential campaign. I agree, and like so many of them, I see this election as a real opportunity to address it.

For what it’s worth, being a younger chronically ill patient who cannot afford to lose my health insurance, someone who is in no way a desirable candidate for insurers, means Barack Obama’s health care platform is more appealing to me. In short, the mix of existing private insurance and expanded government programs for those without access is a much better position for me than the free market would be. Check out their platforms and make your own informed personal decision.

More than anything else, timing is critical here. The female voter matters so much in this election, and chronic disease is what matters most to this important demographic when it comes to health care. It’s time to make our vote count, and it’s time for our leaders to demonstrate that when it comes to chronic disease and prevention, they are listening.

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Language and the Patient Experience: The Follow Up

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I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!

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