Category Archives: Chronic Illness

Synergy (in an unexpected way)

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It’s been somewhat of a synergistic week.

Someone I love is in the middle of some serious health issues. I’m not going into detail because it’s really not my story to tell but more than that, the physical details don’t matter. What does matter is that this person faces a very long and difficult road, and is frustrated and in a lot of pain.

And I am on the outside. I am able to listen and make phone calls or do errands, but completely unable to do what any of us who care really want to do: make it better.

While I can understand the frustration and isolation of illness better than others might, even this familiarity is not enough to bridge the gap. Being able to understand the emotional aspects of this situation does not make me feel any less useless, or helpless.

And with that, I stopped and realized what it must sometimes feel like for the people who love us—so much of all of this is out of their control, too. We often write and think about control in terms of our own bodies—what medications we take, what preventive steps we adopt, what can go wrong not matter how carefully we plan otherwise.

But those who love us have their own frustrations (and I know this is but one of many). They can do so many amazing things for us day in and day out and most of the time, that’s enough. Most of the time, we’re all probably too busy living to stop and think about it much. But every now and then, it must really stink to stand by and watch someone you love go through a bad spell and not be able to do the one thing you want to, which is to fix it.

A couple of years ago I wrote this piece on marriage and chronic illness. I re-read it today, with an even deeper respect for what it takes to make a relationship so much more than the sum of its challenges, and an even deeper appreciation for my husband, who for four yeas (as of today) has shown me what it means to put someone else’s interests above your own without hesitation.

I know I am one of the lucky ones.

Illness vs Disability

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So, this post was percolating well before I was on vacation, but I’m glad I held off on committing it to the screen until now. My vacation was actually a pretty good complement to a line of thought that first began when I met up with Joe Wright of the wonderful blog, Hemodynamics—his posts are always so intelligent and insightful, and I knew speaking with him in person would not disappoint.

As with all good conversations, ours moved from an original specific topic and wandered towards something bigger and completely unscripted: chronic illness and disability, and the disability movement.

Now, if you’ve read this post on illness versus disease or the follow-up on language and the patient experience, you know how interested I am in the semantics of illness. Accordingly, I find the intersection of illness and disability pretty interesting, too.

For a start, people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness.

And if you’re wondering what vacation has to do with this, I’m getting there. While this summer’s vacation was more of a “working vacation” than years past, it was also one of the best ones. Unlike previous August trips, I didn’t have heart monitors or blood pressure cuffs with me. I had adrenaline, and therefore didn’t have to deal with the side effects of solumedrol infusions, and since I didn’t have an active respiratory infection I wasn’t chained to my nebulizer.

Instead, I took walks and brought my dogs swimming and had dinner on the beach and generally had a blast (work aside). My legs worked, my wheezes were dull, and my energy was good.

And in comparing the relative normalcy of our vacation to the chaos I am used to, I couldn’t help thinking about the ebb and flow of chronic illness, how sometimes the body can be cooperative and yielding while others times the symptoms take over so many aspects of daily life.

So for people whose chronic illnesses cause disabling symptoms, how does that boundary crossing work? Going back to the decisions we make when choosing terms to describe illness, when are you more likely to use the term “disability” versus “chronic illness?” Is it a semantic distinction of little significance to you, or is the former more difficult to adjust to or use? (And if so, why?)

I wonder if the choice to use “disability” is more tied up with receiving needed accommodations or services—a more public term—while chronic illness is a more private understanding of the ebb and flow of invisible illness outsiders might not get.

The other connection I’m just starting to tease out (expect more later) is that between the disability movement and patient advocacy in regard to chronic illness. Believe me, I am by no means an expert on the history of the twentieth-century disability movement (I am wading through a lot of articles, though, and am happy for any suggested resources). But from a macro perspective, and doing some major summary here, a lot of disparate patient populations eventually came together under shared goals: respect, employment, accessibility, etc.

Despite the fact that many patients with chronic illness also fit under the umbrella of disability, I do believe distinct differences remain. Reading other blogs and discussion forums, I am often amazed at the sheer variety of chronic conditions out there, by the way some non life-threatening conditions can be really incapacitating, some life-threatening conditions can have the appearance of relative functionality, and how quickly things can change for people. As patients, those with chronic illness have so many different needs and challenges.

So what are the shared goals of the chronically ill, and the catalyst that unites different disease groups and patient populations? Is it health care reform?

I’ve still got a lot of thinking and reading to do. Your thoughts?

Are We Being Too Tolerant of Gluten-Intolerance?

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“Are we being too tolerant of gluten-tolerance?” is the question Slate’s Daniel Engbert explored earlier this week.

Now, I have a lot of thoughts about the points raised. However, I also have a lot of thoughts about another post I’m writing on disability vs illness, the interviews I’m doing today, and all the stuff I’m supposed to pack for a “working vacation” that starts tomorrow, so I’m going to tackle some of the major ideas briefly.

Honestly, based solely on the headline I thought the piece was going to antagonize me (proof it’s a smart headline, no?) but I found myself agreeing with some of it. Of course, where I found myself nodding in agreement were the most obvious distinctions, but they’re important ones nonetheless. Using Elisabeth Hasselbeck’s best-selling book The G-Free Diet and the booming gluten-free food industry as context, Engbert establishes that:

“The lavishing of attention on wheat alternatives is wonderful news to the sufferers of celiac disease, for whom any amount of dietary gluten can inflame and destroy the lining of the small intestine.” Naturally I agree with this; in the five years since I was diagnosed, both awareness and availability of GF products has really increased. More restaurants have GF options, labels are more clear, and more GF alternatives line the grocery store shelves.

(As an aside, does anyone with celiac disease actually use the term “G-free” in public? No seriously, I’m asking.)

Yet I don’t think I’m the only one out there who has witnessed the downside of the popularity of eating GF. For example, because it is known that people without celiac are opting for the GF lifestyle anyway, there can be less urgency about making sure meals in restaurants are actually GF—the occasional eye roll or dismissive glance that means the person I’m talking to half-wonders if I’m avoiding gluten simply to lose weight or something.

I should add here that Engbert makes the distinction between celiac disease and gluten-intolerance pretty explicit; it’s the people who reside on the spectrum of intolerance who don’t have the full-blown autoimmune response to gluten but feel better when they remove it he’s worried about:

“I’m all for people eating what they want, but lately I’ve started to wonder how gluten intolerance might relate to a more general anxiety about food… Any kind of restrictive diet can help alleviate gastrointestinal distress. If you’re paying more attention to what you eat, there’s a good chance your symptoms will lessen.”

He goes on to say, “It’s well-known that our digestive system adapts its secretions (rather quickly) to whatever we’re eating.” By extension, then, removing all products with gluten and then consuming some after a prolonged period could make you feel sick, thus enforcing the idea that you are gluten-intolerant.

(I can vouch for the fact that my husband went GF for a month to see what it was like and when he gorged on starches his first meal “back” he felt awful. Was gluten a shock to his system, or just a sign he overate in a way he didn’t when he was eating GF foods? I’m not convinced either way, but I know he felt pretty miserable.)

I know a type 2 diabetic without celiac who removed gluten from his diet and experienced dramatic reductions in his insulin needs—was it because he was somewhere on the sensitivity spectrum and removing gluten improved his digestion and absorption of foods and that somehow influenced his metabolism of insulin? I’m not an endocrinologist, so I can’t say. But could it be something as simple as removing gluten meant removing the more processed white starches and carbohydrates that spiked his sugar?

I don’t have the luxury to “slip up,” nor am I qualified to dissect those who are gluten-intolerant—we face many of the same challenges and gains in eating GF.

I guess my point is, to me, it doesn’t matter—in my example of the diabetic, the end result was that he felt better and needed less insulin. That’s the important part. If the gluten-intolerant have their own health improvements, that’s a good thing.

I live GF and have no regrets—I eat whole, fresh vegetables, complex grains with plenty of fiber like quinoa, and consume no processed foods. It is not without sacrifice or expense, but in many ways, I see it as a much healthier way to prepare and consume food. If others choose to do the same and experience the same benefits, that’s great.

And here’s where Engbert’s argument gets a bit more interesting. He parallels the rise of eating GF with other diet trends, like Atkins, at the same time admitting he doesn’t think people who choose to go GF are simply secretly trying to lose weight:

“When a restrictive diet becomes an end in itself, we call it an eating disorder; when it’s motivated by health concerns, we call it a lifestyle. It might also explain the relationship between food sensitivities and fad diets: People who are intolerant of gluten or lactose get a free pass for self-denial.”

Not to use the word “sensitive” too much, but I am particularly sensitive to this association between elimination and health. After all, I chose to go dairy-free even though I’m not lactose-intolerant because it helped decrease mucus production. That got a few eyebrows. And when I eliminated sugar and yeast for nine weeks due to my intense antibiotic regimen that wreaked havoc in my GI system, I got more eyebrows.

I consider these moves wholly health-motivated, so my choices would be classified as “lifestyle” ones by Engbert’s definition. But from the outside, perhaps they appeared otherwise to other people?

At the end of the day, I can’t worry about or judge the dietary choices others make or what they think of mine, so I’ll leave this where Engbert does—all this awareness is truly a good thing for celiacs, as well as the people who have celiac but have not been diagnosed yet but have a better chance of it now.

Do I think we’re “too tolerant?” No. Do I think extremes exist in every situation? Sure. Is that a reason to decry real progress for so many people? No.

On Listening and Judging

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I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.

As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.

I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.

I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.

But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.

It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.

Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.

Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.

When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.

But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.

Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.

Does that make me a hypocrite? It might, and I accept that.

Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.

Don’t Know What You’ve Got Till It’s Gone

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I didn’t realize just how little energy I had as a result of my malfunctioning thyroid until I started taking thyroid medication—it was the kinetic equivalent of putting on a pair of eyeglasses for the first time. Everything was sharper, clearer, more focused.

It was a whole new world. Can you relate?

I didn’t realize just how awful (sluggish, congested, weak) I felt when I ate foods containing gluten until I stopped eating them, and immediately ditched the sinus headaches and malaise. Similarly, I didn’t see just how foggy and gross I felt eating foods with sugar (wine, fruit, vinegar, etc in my world) while on suppressive antibiotics until I eliminated all sugars from my diet and no longer got spacey or clammy or had palpitations.

Five years apart, these experiences opened up “whole new worlds” on their own—not without sacrifice, but totally worth it. Have you been there, too?

And of course, I couldn’t tell just how much the muck festering in my lungs clouded over everything and constantly made me feel awful until I started treatments that actually addressed it—postural drainage, chest physiotherapy, etc—instead of just throwing steroids at it and hoping the infections would subside.

It was a whole new world, one that didn’t automatically include multiple weeks in the hospital every year. Have you experienced that type of profound relief?

Sometimes you just don’t realize how bad things were until you do something to correct it, until things are different. When it comes to medical stuff, this isn’t always a bad thing. After all, if we can look back and compare a “before” and “after” favorably, then we’re doing something right; we’re treating the right thing or implementing the right therapy or making the right lifestyle choices.

And right now, I’m experiencing a related type of gratitude. It has been two months and change since I was acutely ill. That’s right, 10 weeks of relative normalcy, a huge step given that for the past year or two my stretch for bad infections had been about two weeks at the most. The few infections I’ve had have been much more minor than normal, so beyond the daily coughing/wheezing and maintenance, my various conditions have been really stable. Part of it is because my “bad” season is over (September-May), part of it is because I am out in public less during the summer (no commuting to germy college campuses), and I know a huge part of it is because of the very aggressive treatment I’ve almost completed.

Whatever the constellation of factors is, I’ll take it.

I forgot what it was like to be able to accomplish a lot of the things I want to do every day, or to make plans without hesitation or fear I’d just have to cancel, or to go to gym and know my lungs and body will hold up their end of the bargain. I forgot just how great and necessary it is to see friends in person, and be part of family functions, or leave the house and do fun things with my husband on the weekends.

Only now that the vortex of that long, awful winter has finally released me can I say that I didn’t realize what an effort simply getting through the routine of daily life was until it was no longer an effort.

And I love this feeling. It’s a whole new world.

Can you relate?

An Issue of Scope

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It’s been a more eventful few weeks than normal, what with last-minute
trips to New York, visiting old haunts in Dublin, dealing with epic technology fails, and the assorted messiness and unpredictability of daily life.

Still, no matter how wonderful or frustrating these distractions are, they haven’t supplanted the main thing looming in my mind right now:

I’m having a bit of scope issue these days (and yes, here’s where the “writing” part of the writing blog comes in). For a huge project I’m working on, I’m asking a lot of questions I don’t know the answers to yet, questions I am not even sure have resolute answers…which is of course a great thing. After all, questions with known answers aren’t exactly intellectually stimulating.

However, the flipside to being really interested in something and asking lots of questions means that as soon as you locate research and information and begin to understand something, you realize how much more you need to know. And then when you find that next piece of the story, yet more doors open. It’s an exhilarating, exhausting cycle. I’ve gathered thousands of pages of journal articles, newspaper/magazine articles, essays, and statistics. I’ve read and annotated dozens of books, and am in the middle of several rounds of interviews with people all of all persuasions—patients, doctors, researchers, activists, policymakers, etc.

I can sit at my desk and quite literally be surrounded by mounds of resources, fully organized and categorized, and still not know exactly what I am doing. I know this is part of the process, I know this is how it should be, but sometimes I am overwhelmed by the sheer amount of information I have. Some of the research articles or carefully annotated passages from books I know I won’t end up using, some of it I know is still out there and is information I will need, I just don’t know it yet. How much context do I need, how much background is appropriate, how can I possibly touch on the surface of topics that are so big each could warrant a book on its own?

To talk myself of the ledge of information overload, I’ve had to remind myself that all of it matters, that it’s all shaping something bigger and eventually it will become clear to me how the pieces fit. None of the knowledge will be in vain. Seriously, I’ve actually said this to myself in my head. (What can I say? Writing can be an isolating existence at times. I’m lucky I don’t say it to dogs.)

It reminds me a little of one of my early experiences freelancing. I pitched Idea A to a newspaper editor, who teased out a smaller thread from my original idea and assigned me Idea B as the story. I jumped in, reading multiple books, wading through research, interviewing national experts, revising draft after draft. I became truly engrossed in the topic, and rattled off statistics and factoids without ceasing to anyone unfortunate enough to ask me about it. I’m fairly certain my neck flushed and I talked with my hands, which happens when I’m either nervous or really animated.

Then the editor decided it wasn’t the right fit for her page after all. Of course I was upset; no byline, no paycheck, no recompense for hours and hours of work. But I don’t regret the experience at all. I now know so much about direct-to-consumer advertising of pharmaceuticals, and I still have strong feelings about it. The foundation I got from that story comes in handy when I’m interviewing people for other stories, when I’m doing research for my book, when I’m reading and responding to other blogs and essays, when I’m thinking about health reform, when I’m watching television or flipping through a magazine and am inundated with bouncing balls, buzzing bees, or luminous butterflies.

And when I have classes full of pharmacy students? I don’t regret for a second all the knowledge I gained because it allows me to engage in a more meaningful dialogue with them.

So yes, I sometimes need to remind myself that all of this data that is flying around will settle, and that none of it will be in vain. In a way, it’s also similar to all the researching and trial and error we do when we’re narrowing down diagnoses or testing different treatments. Not everything is going to yield the exact answer you’re looking for in that moment, but eventually you find it will answer other important questions, too.

While I prefer concrete answers when it comes to diagnoses and treatments, despite its stresses I see the value in unraveling questions. When it comes to writing, I wouldn’t want it a different way.

When the Familiar Becomes Something New

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We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I’d spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)

Musings at the One-Year Mark

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A year ago today, I wrote this post to mark the official publication date of my first book, Life Disrupted. I talked about blogging, writing, and storytelling, and the power of narrative and the responsibility that comes with writing other people’s stories.

In the year since the book published, I’ve learned a lot, from how to pace book readings and radio interviews to how to switch gears from asking the questions and writing the material to being on the other side of the story. I’ve had the chance to connect with readers in person and online, and I’ve been fortunate to hear their stories. On the one hand, I’ve been particularly surprised by how many people with rare diseases I’ve heard from, yet perhaps I shouldn’t be surprised by that. I’ve said it before, but I really do believe the universals of living with illness outweigh disease-specific symptoms: denial, acceptance, disclosure, survival, guilt, vulnerability, etc.

(Interestingly enough, one specific thing in the book that resonated with a lot of readers was the infamous “honey mustard incident”—I guess reaching our own personal breaking points, even if the trigger itself is inconsequential, also defies diagnosis or length of illness.)

This notion of community or belonging is something that’s been on my mind a lot lately, both in terms of what I do here on this blog and in a much broader sense of the chronic illness population. I don’t consider this a celiac blog or a rare disease blog or a PCD blog but I write about issues related to living with those conditions when appropriate. It’s not a chronic pain blog per se, or an autoimmune disease blog, or an infertility blog, but again, when those topics are relevant to my life or readers’ lives, I write. I like writing about policy—and right now, there’s plenty of grist for that—but again, that’s part of the chronic illness experience.

Kairol Rosenthal recently wrote a great piece on the young adult cancer community, where she wondered if staying too close in the “safe” world of like patients meant missing out on the shared (relevant) experiences of others. She found she could learn from patients with totally different diagnoses who also had the same worries and fears.

Coupled with this post, a concept we discussed at the President Clinton event has been rattling around in my head for the past week or so. The conversation was about race, religion, respect and how (if) attitudes have evolved over the past few years, but Clinton’s thoughts on identity are very applicable to illness as well. He said (summarizing here) that often humans tend to identify ourselves by negative reference to others—so instead of saying “I am X” we are likely to say, “I am not X.”

Taking that and applying it to chronic illness gets interesting. There are divisions we could use to define ourselves everywhere: those who are lifelong patients versus those who get diagnosed as adults; those whose conditions are life-altering and those whose conditions are life-threatening; those with familiar, common diseases and those with rare diseases; those who live with chronic pain versus those who don’t; those who have a solid support system or access to appropriate health care versus those who might not…the list could go on.

We’ve all experienced negative referencing, whether it’s the waiting room where people are “competing” over who is the sickest, whether it’s in the doctor’s office when we’re filling out forms and checking off boxes that label our conditions, whether it is an offhand comment made by someone that hurts us. I started to do it myself above when I talked about all the labels that do not fit this blog. Really, chronic illness is a huge umbrella term and we all fit under it in some way or another.

Yes, of course there are very real differences—the newly diagnosed patient will face the shock of the “before” and “after” in a way others won’t; the person with a rare condition might face more roadblocks and challenges in diagnosis than the person whose condition can be diagnosed with a simple blood test. That is natural and inevitable. Over the past year, I’ve been lucky to hear from so many people who identify by inclusion, who seek out the shared experiences and emotions. As a society, hopefully we can continue to evolve in this regard. As patients, hopefully we can do that, too.

Thank you for sharing your stories. Thank you for giving me something to write about.

And of course, thank you for reading.

Is Soda the Next Big Tobacco?

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Prevention is always a big buzzword in health care reform, and lifestyle choices that decrease the risk of developing costly and debilitating chronic diseases are a huge part of this frequent conversation. A glance at the cover of this week’s Time magazine shows an issue devoted to prevention and wellness throughout the lifespan, and an article called “Food as Pharma” leaves no question about the impact of what we put into our mouths in terms of health and wellness.

With uncanny timing, the magazine arrived the day I had a scheduled interview with renowned nutrition/obesity expert Dr. Barry Popkin, author of The World is Fat as well as recent research linking the consumption of sugary beverages to negative health outcomes. He claims drinking one extra 12-ounce can of regular soda a day, at 140 calories, can cause you to gain 13 pounds in a year.

Dr. Popkin is a strong supporter of taxing beverages like soda and whole milk the way cigarettes are; in fact, he considers soda “the next big tobacco.”

When Massachusetts announced a plan to require chains to list the calories in their items staring next year, the gamut of reactions was predictably wide: some thought it was a great way to make consumers more conscious of their choices; others thought it was an egregious governmental interference into our lives. Against this backdrop, I was certainly excited to discuss Dr. Popkin’s research with him. Here is some of our conversation:

Why is soda the next big tobacco?

Like tobacco, soft drinks and sugary beverages have no health benefits beyond pleasing us, and they have many drawbacks.

According to Dr. Popkin, what makes sugary beverages unique in terms calorie intake is that drinking these calories does not reduce our food intake—normally when we eat food, even junk food, we cut other food intake down.

From an evolutionary point of view, he pointed out that humans always drank water or breast milk. If we go without water for three days, we could die but if we don’t eat, it could take a month to two months to die. Over time, we developed mechanisms where the food and thirst mechanisms are separate, which adds to the unique caloric qualities of sugary beverages.

“Not only don’t they benefit us but they a 100 percent to our poor health by adding to our calories,” he says. What’s more, research suggests that the fructose in sucrose (natural sugar) or high fructose corn syrup adds directly to visceral fat, which is the fat around the heart and liver—and it is the only substance known to do this. It is the most toxic type of fat in terms of diabetes and metabolic syndrome as well as some cancers, so removing sugary beverages is a prime prevention method. (You knew I’d circle back to prevention, right?)

What about the tax and health reform?

Comparing this to the decrease in smokers (and by extension, the health consequences of smoking) as a result of the cigarette tax, Popkin maintains that taxing soda and sugary beverages will reduce the risk of overweight, obesity, type 2 diabetes, and cardiovascular disease. (He also has forthcoming research in this area). Massachusetts is one of a handful of states considering this kind of tax. Popkin also noted that on a larger scale, the United States lags behind many high-end nations in reducing the consumption of sugary beverages.

“We are good at causing disease but not good at fixing it,” Popkin says, a comment that goes beyond the idea of the soda tax and hits on the basic structure of our current medical system. Right now, we spend too much on band-aids for the problems rather than taking steps to correct them at the source. To that end, Popkin sees the beverage tax as a major way to help fund reform and improve health and quality of life.

What is the response to those who think such policies might go too far?

In response to this sentiment, Popkin pointed to previous public health initiatives that were initially met with resistance, like seatbelt use, measures to curb smoking, and putting fluoride in the water. “Clearly there isn’t a single public health initiative that hasn’t faced these arguments,” he says.

He also counters with the following facts: Right now, we’re ranked between 30-35th percent in life expectancy and health care costs are swamping us. Need more statistics on sugary beverages? Forty percent of soda drinkers consume a whopping 600-900 calories a day from their drinks. And, as many of us might now realize, he says natural sugar is just as bad as drinks sweetened with high fructose corn syrup—they both contain fructose, and both add to visceral fat and calorie count.

The way I see it, framing soda as the next big tobacco is also an extension of an even broader debate: if prevention is a fundamental component of health reform, what is the best way to accomplish it?

It’s your turn to weigh in: is soda the next big tobacco?

For more information, check out the video posted below, where Dr. Popkin and colleagues discuss the health impacts of sugary beverages at a recent International Chair on Cardiometabolic Risk (ICCR) conference:

A Better Place

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This past weekend, I opened up my office window and let the warm air fill the stuffy room. It was a gorgeous day where the sun was high and warm but the breeze kept the heat from being oppressive. Later, when we took a break to walk the dogs around a nearby pond and I blended in with the cyclists and joggers and hikers, I even felt healthy.

(Okay, so maybe I coughed up half a lung when we got home, but productive coughs are a good thing in my world.)

More than that, I felt so far removed from the long, hard winter (well, fall, winter, and most of spring) I’d left behind me. In my consciousness those months were wrapped together underneath a disorienting haze, in sharp contrast to the bright sunlight, blue sky, and green grass before me. Nothing about them was distinguishable, and I preferred the abstraction of it. It proved to me there was enough distance to solidify the change I felt: the change in seasons, the change in infection level, the change in medication protocol that, while challenging, is definitely worth it.

This morning I awoke to chilly temperatures, a gray sky, and intermittent rain. Not a big deal, and certainly conducive to working through a heap of writing and editing.

But for one brief moment, as I kicked water off my sneakers and unzipped my sweatshirt, I suddenly had a very vivid image of the winter. One specific day in winter, one that stood out again in my mind just as definitively as the bright sunshine that lit up my office just days before, and one that is emblematic of the whole seven month period:

It was a Thursday. I remember watching the snowfall total in the morning and praying, praying classes would be cancelled because I felt terrible but I’d already cancelled them the day before due to illness. I knew I couldn’t scrape by managing them online again. My peak flow readings were so far into the red zone I wouldn’t even tell my physical therapist what they were (but they’d been like that for days so I’d adjusted to it.)

As the snow gave way to icy, freezing rain that turned the roads from slick to downright treacherous, I knew using our tiny little car wasn’t an option. The walk to the subway station is normally very short, but between the snow, the ice, the heavy bag, and the lack of lung capacity I had from the acute infection, it took me 25 minutes. Getting through class took every remaining ounce of energy (and oxygen, apparently) and what I remember most from when I exited the building was this:

I was stuck. It was now nighttime, and there was no way I could get to the (nearby) subway stop and get home. Not with this bag, this infection, these lungs, this tired body, and not in this frigid slushy mix.

(And my stupid galoshes were leaky. Sure the pattern ones look all cute, but they can’t hack it in New England.)

I needed my nebulizer, I needed air, I needed my briefcase to not weigh so much, and I really needed it to not be snowing/sleeting/raining/icing. I probably needed IV antibiotics too but that particular conversation would happen a few weeks later.

Or, I needed my husband to come and get me, snaking his way through city traffic to take my bag and my hand and somehow get me home.

And of course he did, and of course we made it home, and of course I’d been in situations far more serious than this. But for some reason that night, the commute, the cold, wet feet, the bloody cough, the absurdly heavy bag, the rawness—they all conspired to wear me down in every way.

Maybe it was just the chill in the air today that made me remember how raw I felt that night, or maybe it was the wet feet. Whatever triggered the memory, it was brief and fairly inconsequential, filed away for a blog post later today but otherwise buried underneath morning headlines, client specifications, and e-mails.

So why go through the process of describing an event that ultimately has little impact on me now? (Other than to flex my descriptive writing muscles after hours of more technical writing and research, that is.)

For a project on gender I’m researching the relationship between chronic illness and PTSD. At first, I was looking at the potential emerging link between PTSD in soldiers who have seen combat and the development of chronic illness later in life. But as I dug deeper I found another wrinkle, one that hadn’t even crossed my mind: formerly healthy people who developed PTSD as a result of sudden, life changing (and often excruciating and traumatic) illness. For patients like this who improve and then later relapse, even if it is not as severe a relapse as the initial event, the worsening symptoms can serve as sort of a trigger that brings them back to the horrible moment where everything changed radically, or back to moments of unimaginable physical pain, etc.

(I’m summing a lot of this up and probably not eloquently but hopefully it makes sense.)

It wasn’t a phenomenon I’d heard of before. And clearly my little example of wet feet making me think of a nasty infection and a nasty storm is just that: a little example of the power of memory and of certain details to bring us back to a different place. I’m lucky the place I went to wasn’t bad, just a blip in a crummy winter, something I could use as stand-in for an experience that is not mine. I’m lucky to look back and say,”I’m in a better place.”

If any of you out there do have personal experience with this, though, I’d love to hear your insights…