Fragmented (or, the post where I come clean…)

Posted on March 24, 2009 by ledwards

“I don’t like your body language. You’re not yourself,” was the first thing my doctor said as he entered the room. I was slumped in my chair, and I didn’t need a mirror to know I was pale and my eyes were ringed with dark circles. I did not jump up to greet him like I normally do, and I did not talk quickly or with animation like I normally do. Also, I did not contradict him; I didn’t like my body language, either.

(Apparently, this is what six months of virtually continuous infections will do to a patient’s posture.)

“What’s on your mind? You’re not yourself,” my husband said to me one night as I closed my laptop and stared listlessly at the television, trying to ignore the clutter of the “sick camp” that had taken over our living room: nebulizer and pill bottles fighting for space with stacks of research books, student papers, and half-empty mugs of tea. I was tired of typing while lying down.

(Apparently, this is what six months of virtually continuous infections will do to the coffee table.)

“Are you sure you’re alright today? You’re just not yourself,” my mother said to me in a quiet corner of an otherwise crowded baby shower. She delicately inquired if I was wearing any blush (hint: you need some) and pointed towards the table where I could sit. As I made my way across the room, more than one surprised person said to me: “Oh wow, you’re here. You never make it to showers or events.”

(Apparently, this is what six months of virtually continuous infections will do to my ability to be reliable.)

I do not have direct confirmation from the students I fear I have been short with, the clients and many others still waiting for responses from me somewhere out there in cyberspace, or the friends whose calls I’ve missed or plans I’ve cancelled, but I’m willing to bet they’d agree with this assessment that I am not myself.

Not to get all meta on you, but even here on this blog I feel as though my voice has been slightly off; more cursory and more willing to point you to other places for interesting material rather than being a destination for the discussion itself.

Now, as a general rule I find the term “not myself” a bit vague and useless—how can I be anything other than myself? But the point is well taken; I am not acting as I normally do (or talking, sitting, thinking, and basically getting through the day as I normally do.) I admit it.

For one, I am fragmented. This is something I hear from so many people right now, and I’ve noticed it on several blogs the past few weeks—people taking a break from blogging, or taking a break from commenting and reading, or disconnecting from everything for a bit because there is too much going on. Seems like so many people are taking on more projects and extra work with less time and energy to do it all.

In my world, the freelance deadlines, the huge research project, the class prep and essay grading, the student e-mails (and phone calls!) late at night and early in the morning, the presentations and speaking engagements, and the many other things constantly piling up equal working seven days a week. But I know that while the work details themselves may be different for others, the end result is the same: we’re all being pulled in several different directions.

Usually, though, I thrive on this kind of juggling. This is how it’s always been, and I’ve always thought of it as multi-tasking, not being fragmented.

So what’s different? I just haven’t had the energy to fully engage in most of the things I need to do. “It takes so much energy to simply get through the day and get home that there’s nothing left for anything else,” I told my husband.

I’ve been blaming it all on the long winter here in Boston, sort of joking when I do. But it’s the truth—no winter is ever good for me, but the months from September through right now have been an unusually bad few months. Nothing exotic or hugely interesting, which is why I’ve been hesitant to write about it much, just one infection after another after another after another. Ad infinitum, it seems. In almost seven months, I’ve gone a whopping nine days between infections.

(I’m tempted to say I have the immune system of a gnat right now, but knowing little about gnats, I’m worried that may not be as helpful an analogy as I’d hoped.)

Again, none of this is unexpected in people like me; for whatever reason, this year has just been more virulent. (Ha! Pun somewhat intended). And it took me several months to see for myself how much of my energy was diverted away from other things in my life and consumed by fighting off infections.

So maybe it’s not that I’m fragmented so much as I am currently doing too many things for the altered supply of stamina I have.

Or am I splitting hairs here?

Anyway, I think things are turning around (ignoring the 30-degree weather today, of course). I’m starting to feel better, and my doctor and I have an official plan to try and get me through the next few months. Oh, how I do love me a good plan. I am encouraged by this, and I am confident I can get past the nine-day mark soon. I am not as stressed by the pile of things to do because I’m actually able to chip away it.

And winter? It’s officially over. Now I just need the lungs to get the memo, and we’re all good.

I’m back.

(Apparently, this is what two virtually continuous days of feeling okay will do for a soul.)

Thanks for waiting.

The Patient-to-Patient Relationship

Posted on August 17, 2008 by ledwards

One of my long-time favorite bloggers, Dr. Rob of Musings of a Distractible Mind, has gotten a lot of press lately on Tara Parker-Pope’s Well blog in the New York Times. His posts on what six things doctors should know and how to be a better patient are insightful, practical, and, judging from the volume of comments they elicited, they touched on topics at the forefront of people’s minds.

I’ve written a lot about the doctor-patient relationship on this blog, and discuss in detail how to establish a successful partnership with doctors and become an empowered patient and advocate in Life Disrupted, and it’s wonderful to see these issues covered from the physician’s perspective.

I’ve spent a lot of time having appointments and tests lately (this recent health static also explains the slight delay in postings this week), and I can’t help but think there’s another angle to this larger discussion on relationships in health care—the patient-to-patient relationship. After all, from crowded waiting rooms and emergency departments to double-occupancy hospital rooms and rehab groups, we don’t just spend time with practitioners when we’re living with chronic illness. We spend a lot of time in close proximity to each other, and since we’re all in this together, there are definitely things we should remember to be better patients to each other:

1. Be punctual, and if not, proactive—Show up on time; one late arrival can often cause an ugly domino effect on subsequent appointments. I usually have an uncanny knack for getting on the road just when a lane has been closed, an accident has just happened, or some other traffic-inducing calamity occurs. As we all know, despite our best efforts and best intentions, life happens, and we can’t always control our arrival time. But if you realize you’re not going to make it in time, make a reasonable attempt to let the office know, and estimate when you think you’ll show up. This way, they don’t give away your appointment entirely, and might be able to make up the time other ways if they have advance notice. It’s the fair thing to do for all the other patients who do show up on time.

2. Cell phones are great in an emergency, but totally annoying in other settings—Loud ring tones and even louder telephone conversations have no place in a waiting room, ER bay, or hospital room. Besides the fact they might interfere with medical equipment, they are disruptive and distracting to other patients, who may already be anxious enough. Keep your ringer silenced and if you do need to take a call, step out into the corridor, the front entrance, or any other place where your personal business doesn’t infringe on someone else’s. I’m always attached to my cell phone, so reminding myself that I don’t have to answer every call or that I can call the number back from outside takes practice.

3. Triage exists for a reason–I can’t count how many occasions I’ve watched people become irate and even antagonistic when they’re waiting to be seen in the ER and others are called first, anything from sniping in their seats when other names are called to repeatedly (and loudly) badgering the front desk. Such behavior makes it harder for the rest of us, who are also impatient to receive medical attention and who are in pain, too. When we’re uncomfortable, scared, and anxious to be seen, it’s certainly understandable that we may get impatient, but the ER is not first come, first serve. That doesn’t make waiting for an X-ray of a broken bone or a CT scan for a painful abdomen any easier, but there’s a reason patients with more severe injuries or complaints jump to the head of the line—their lives may depend on it. As a related item, in a regular office waiting room, remember that many practices have patients in the same waiting room visiting different doctors—just because you’ve been waiting longer than someone else doesn’t mean you’re getting skipped, it just means that person is probably seeing another provider.

4. Remember there’s another side to the story–I’ve totally been that irritated patient in the doctor’s waiting room, annoyed that my appointment time has come and gone and worried about the work I’m missing. But I’ve also been that extremely sick patient who got worked in at the last minute because I couldn’t afford to wait, and my doctors couldn’t afford to delay diagnostic tests and evaluation, the patient who backlogs the schedule and takes up a lot of time. While I’m not always successful at it, when I start to get antsy and annoyed I try to remember the times the tables have been turned and other people have had to wait on account of me. I try to dial it back a bit, and be glad that I am there for non-emergent reasons.

5. Pay attention to social cues–Sometimes, there’s nothing better than some conversation in a waiting room. Whether it’s commenting on a headline, discussing patient education materials, or comparing notes on a similar condition or medication, polite chit chat or commiseration can pass the time and even forge temporary bonds. But you never know what’s going on in someone else’s life, what their health status is, what they’re worried about in their impending doctor visit, what other life problems are on their minds. Some days are just bad days, when people don’t feel like idle chitchat and don’t want to engage in conversation, and may not want to hear about the particulars of your condition. Be sensitive to those cues, and don’t take it personally if someone doesn’t reciprocate your friendly gestures.

6. Don’t make assumptions–I really believe that most people are well intentioned and that comments are made out of concern or curiosity, not maliciousness or spite. With that said, however, be careful about vocalizing snap judgments. One afternoon I was sitting in an infusion room, surrounded by four or five other patients who were also receiving IV medication. We knew we’d be together there for a few hours, and started chatting. The rest were older, and had the same condition and medication. I was there for something completely different, and they wanted to know why I was receiving the medication I was. I answered briefly, and one woman replied by saying, “Really? That sounds bad! You look too young to have that!” and, turning to the person on her right, added, “Doesn’t she look too young to have all that? Makes me feel lucky!” Um, yes. I know she didn’t mean any harm by it, that she was probably just surprised because I had something different than the rest and because she had a daughter my age, but in the moment, it still made me feel like a freak. Clearly I wasn’t too young for it or I wouldn’t have it, and I didn’t feel especially “sick” or serious, so her emphasis on how “bad” it sounded was unnerving. I know I’ve been guilty of the same thing, because sometimes our gut reactions rush to the surface and our responses can have completely unintended consequences.

Really this all boils down to common sense, but in our more trying moments when we don’t feel well and we’re frustrated, it’s worthwhile to think about what we each bring to the patient experience.

Disclosing Physcians’ Gifts: Analysis, Articles, and An Interview

Posted on August 8, 2008 by ledwards

As a patient, patient blogger, and all around news junkie, I have to admit when I first heard about health care reform legislation in Massachusetts aimed at reducing costs this past March, I was more than interested. When I learned that part of this legislation involved a ban on gifts to physicians from pharmaceutical companies, I was even more interested. Reduce costs and limit potential conflicts of interest? My heart trilled just a bit. What’s not to love?

But if a recent flurry of headlines about the controversy and heated opinions are any indication, newly modified legislation that makes public any gift of $50 or more a physician receives from a pharmaceutical or other company is anything but simple or obvious—especially in a state like Massachusetts, where the life sciences sector is a huge part of the economy and academic research centers and hospitals are integral.

To wit, an editorial in the Boston Globe urges Governor Deval Patrick to stand firm on the bill, writing that “the state is right to make sure doctors make medication decisions based on merits, and not meals.” At the same time, an op-ed penned by leaders from the biotech and medical device industries outlines their case for why the legislation “will absolutely affect whether companies continue to choose our world-class hospitals for this important clinical work.” Read through them for more background; there’s a lot to digest.

It’s certainly a good time to be a health news junkie in Boston, no?

As always, what I’m interested in how these issues will affect our daily lives. As a patient with rare diseases who knows firsthand how important research and development are to patient outcomes, how could I not be curious? After all, clinical trials are where the developments we count on come from, and if this legislation will have a negative impact on clinical trials, as opponents claim, I’m certainly paying attention.

It makes plenty of sense to me why legislators who want to reform health care and contain costs would support this bill, and it makes a lot of sense to me why patients would care about what their doctors are getting from the companies that manufacture the medications and medical devices that treat them. Patients want the treatments that are best for them, and those are not necessarily the ones that have the largest marketing and promotions budget. Transparency is a hot-button issue in health care right now, and with good reason in this context.

It’s important to me I understand where the positions both sides are taking originate, and clearly it’s not enough to pit this in terms of disclosing physicians’ gifts or not, or making comments about sandwiches and pens. To that end, I chatted today with Dr. David Charles, chairman of the Alliance for Patient Access, a non-profit organization that teaches physicians how to advocate to ensure patients have access to appropriate therapies, to see why there is such opposition to this legislation.

(Since it’s all about disclosure, the AfPA receives funding from industry trade groups).

According to Dr. Charles, a fundamental problem with this portion of the legislation is that it has the potential to set up a “complete misunderstanding” of the relationship between universities, physicians, and the companies (pharmaceutical, medical devices, biologics, etc) that support these clinical trials—and he considers this partnership imperative if we’re to continue seeing progress in understanding and treating diseases like multiple sclerosis or Alzheimer’s, to name but a few.

“This is a step backwards, not forwards,” he says.

Since the information published on the state Web site would mention the physician’s name and the money he/she received that went above $50—and not how the money was used—he fears the flow of funding could be misconstrued. This also goes along with other claims (see links above) that this kind of disclosure would make physicians less likely to participate in clinical trials, meaning companies would then invest in them in other places.

For example, money that goes to the university to help support clinical trials would look like it was simply being paid to a physician, not the university and all the staff involved in the trial. Or, money allocated for a physician to teach other physicians how to use cutting edge technology and devices that improve patient care would not be identified as such. Dr. Charles worries this “disclosure without context” could make what are completely appropriate and essential practices seem inappropriate.

He also had some interesting things to say about the writing of prescriptions, which is often one of the first criticisms patients and policy experts point to when discussing conflicts of interest and gifts from pharmaceutical companies. “Writing prescriptions is not the issue at hand,” he says. Rather, helping physicians understand when to select certain medications—what the side effects are, what drugs they work the best with and which ones they shouldn’t be prescribed with, etc—is the key issue. He views educating physicians about these variables, much like training physicians on how to use new equipment and other forms of continuing medical information, as both completely appropriate and essential for the best care for patients.

So patients (and readers from all points of view), I’m interested in what you think about all of this. As you can see from the media blitz on all sides the debate wages on, but the bottom line is, what is best for the patient? Do the potential risks to the partnership so important to clinical trials outweigh the benefits of the concept of transparency so many of us hold as paramount these days? While we wait for the Governor’s response, I’m eager for yours.

UPDATE, 8/11: Here’s an update article from today’s Globe that discusses the health policy Gov. Deval Patrick signed into law. Looks like transparency wins–or at least gets a big push! Check out the article; there’s a lot of good info the primary care physician problem I’ve written about before.

An Open Mind

Posted on July 21, 2008 by ledwards

I was asked recently what one thing I would like to tell physicians, nurses, and other health care providers. I just wrote a book about interacting with the health care system, and its content ran the gamut of emotion: gratitude, optimism, frustration, skepticism–clearly I’m not one for brevity.

In the end, though, the answer was succinct, and the more I think about it, it is something that applies to patients and practitioners equally:

Keep an open mind.

In terms of diagnosis, the flash point for so many patients with chronic conditions, keeping an open mind works in several ways. For physicians, it means remembering that the obvious, logical diagnosis may not always be the correct one, something I can attest to personally. I am forever grateful to the physicians who looked beyond what “should” have made sense for a diagnosis and found the diagnosis that actually reflected both my experiences and my symptoms—even if it was an exceedingly rare one. For patients, it means remembering that even if you’ve been dismissed before, it is possible to start fresh with a physician or nurse practitioner and work towards a correct diagnosis.

In daily life, keeping an open mind means, quite literally, being open to new or creative ways to adapt to illness. Whether it means trying techniques like yoga or meditation, incorporating new foods and recipes into meal planning, or very pragmatic things like switching your exercise schedule or working out a flex time arrangement with an employer, keeping an open mind means recognizing there are many different approaches towards accomplishing a particular wellness or lifestyle goal.

If you’ve been reading this blog regularly, then you know how important I think an open mind and a willingness to try new ways of solving existing problems are to meeting some of the universal challenges in health care: better disease outcomes, increased compliance, and, yes, of course, more accurate and efficient diagnoses.

That’s why I’ve posted about the value of expressive writing, and why I developed a creative writing program for chronically ill pediatric patients. It’s also why I think programs like Dancing with Parkinson’s or Loolwa Khazzoom’s Natural Pain Relief that use dance and other forms of the arts to relieve pain, increase strength, and otherwise address symptoms of debilitating disease are incredibly valuable.

It’s also why I was so interested in “Monet? Gauguin? Using Art to Make Better Doctors” from Sunday’s Boston Globe, which discussed a class at Harvard Medical School that encouraged medical students to use art to improve that most fundamental and most complex of interactions—the patient exam and diagnostic process.

The article quotes Dr. Joel Katz, who first proposed the class five years ago, as saying, “We’re trying to train students to not make assumptions about what they’re going to see, but to do deep looking. Our hope is that they will be able to do this when they look at patients.”

Turns out, new research in the Journal of General Internal Medicine supports this. The article goes on to say that the students’ ability to make more observations increased by 38 percent. In age where physicians rely heavily on CT scans, MRIs and other specialty diagnostic tools—some argue too heavily, and at too high a cost for the health care consumer—helping medical students learn to see the many possibilities inherent in one situation is a valuable skill indeed. More precise observations yield more precise diagnoses.

Sounds pretty good, doesn’t it? The course was a stark departure from the required core courses at Harvard Medical, but all it took was a few open minds…

Summer Reading…

Posted on July 7, 2008 by ledwards

Nothing says Independence Day quite like the Law and Order SVU marathon. With my long weekend vacation plans derailed by an acute infection (where do I keep catching these things, anyway?), I ditched the sandy shores of Cape Cod for my living room couch and settled in for the one-two punch of the nebulizer and Benson and Stabler cracking meaty cases.

However, my revised weekend plans also gave me a lot of time to feed my habit as a news junkie, and I came across some stories I had to share.

I recently wrote about the promise of research in terms of better treatments and improved outcomes, so I was particularly excited to read these new developments. This Boston Globe article discusses cutting-edge nanotechnology that allows scientists to detect cancer cells in patients’ blood, which could mean more targeted treatment and less side effects.

According to the article, “The technology, invented at Massachusetts General Hospital, uses a microchip scanner no bigger than a business card to analyze a patient’s blood, hunting for stray cells shed by tumors. The device is so powerful that it can detect a single cancer cell among 1 billion healthy blood cells.”

Another Globe article—this one’s hot off the presses, in today’s edition—reports that scientists have linked 32 genes to Crohn’s disease, a serious autoimmune disorder that affects the GI system. While genome research is often used to help determine the risk of developing certain diseases, this type of information is a powerful use of research with huge implications for patients. As the article posits, figuring out what goes wrong in certain diseases will help experts design more effective treatments:

“I would say Crohn’s disease has proved the paradigm,” said Dr. Francis S. Collins, outgoing director of the National Human Genome Research Institute. “Namely, that by studying the genetic factors involved in a complicated disease, you can shine bright light on its causes that you never could have achieved any other way.”

***

In preparation for a ReachMD radio interview I’m doing, I’ve been thinking a lot about the doctor-patient relationship. I’ve had some truly amazing doctors and nurse practitioners—compassionate, insightful, dedicated, and creative people. I’ve also had the opposite, of course, and those are the relationships I’ve abandoned. As such, I found this New York Times piece fascinating—in this case, it’s the doctor who ends the relationship because he cannot work with the pediatric patient’s difficult (and noncompliant) mother. Check it out and see if you agree.

Speaking of the New York Times, I’ve enjoyed past entries about writing and illness in Tara-Parker Pope’s “Well” column. If you’re interested in the power of expressive writing, here’s another good read from her column, this time about poetry and cancer.

Enjoy!

Specialists, Specialists Everywhere, But for the Little Things, Not a Doc to Spare

Posted on September 30, 2007 by ledwards

The last time I had any sort of primary care doctor was when I was in first grade, up until the pediatrician who referred me as a baby to the ENT and immunology doctors handed me off to them altogether. It appeared I wasn’t exactly an ideal candidate for generalized care. Considering the strep that sent most little kids to the doctor’s office for a quick swab test and some meds ended up spewing from my ears and lodged in my knees, I can’t really argue with his logic.

For most of my childhood and young adulthood, I rotated among specialists for a confounding array of ailments: an asthma/allergy doctor for my lungs (and we all know how well that went); an immunologist for my IGg deficiency disease, an ENT doc for the ever-present (and sometimes life-threatening) infections and surgeries, a rheumatologist for the joint inflammation that began in my lower back at age 10. There was also the orthopedic surgeon who fixed my ankles and diagnosed my knee problems, the specialist who dealt with my enlarged liver and spleen, the urologist, the endocrinologist, and many others.

No wonder my genial suburban pediatrician looked at me and secretly wanted to run in the opposite direction. (And can you just picture what it was like when I was asked to supply copies of my entire medical record? I think upwards of six hospitals had a piece of me.)

It was (and is) a precarious position to be in, and I cannot help but think of the overused analogy of the quarterback: I had lots and lots of team players responsible for different things, but I had no one coordinating all the moving parts.

I still don’t. I have my lung doctor, who is amazing. I actually have to suppress the urge to tell him he’s a rock star when we communicate via e-mail because I do not want to sound like a crazed fan or something. I have a scarily smart rheumatologist who oversees various infusions and inflammations and serves as my de facto primary care doc, but her office is busy and isn’t made to handle acute (but minor) things that aren’t technically related to rheumatology. I still have a handful of other specialists who deal with isolated problems and body systems, and I see them and undergo their suggested tests.

I am not arguing against specialized medicine. I would be foolish to do so. If it weren’t for advanced, sub-specialized care, I never would have received diagnoses for rare respiratory diseases, diagnoses that have changed my life. I depend on the cutting-edge research into ridiculously niche problems my specialists conduct to maintain my quality of life and hopefully change the future outcomes of progressive diseases like mine.

That’s no small order.

But whom do I turn to when I have a nagging headache that persists for weeks? I know (because after 20 surgeries, you just know these things) it isn’t sinus related, and my eye prescription is current. What about the fleeting dizzy spells and intermittent fog that is different from the chronic fatigue or adrenal depletion? Do I start with the ENT doc and move outwards after that? Call up the rheumatologist and see if she’ll take a crack at it?

And what about all the normal things other people get checked for during physicals? I can’t remember the last time I had a physical. I know that many, many important things in my body are monitored regularly, but for all the sophisticated tests and labs I have, are there smaller routine things no one is checking because everyone is looking at something different?

I’ll figure it out, I know. I have a lot of weird issues that necessitate a lot of doctors and I can’t argue against that.

But when niggling things manifest, I’m not sure any of them are appropriate people for me to bother. I’m thinking of taking the plunge and getting a certified primary care doc. I hear they’re something of an endangered species, and I fear people like me are largely responsible for that. But if they’ll have me, I just might like one of them….

So Speak Up Already

Posted on August 29, 2007 by ledwards

An interesting article in Monday’s Boston Globe called “Patient, Protect Thyself” covered ways hospital staff and patients alike can combat a serious and often preventable problem: infectious disease in hospitals. From making sure everyone who enters a patient room washes his or her hands to maintaining vigilance over the amount of time tubes are left in the body, there are all sorts of ways to reduce the threat of infections.

Questions of communicable agents and preventative practices aside, the article touched on a larger theme that resonates with me, the idea that patients not only have the right to question their health care providers but that such queries are an essential part of optimal care.

Perhaps the meaning of “Patient, Protect Thyself” is really “Patient, Assert Thyself.”

This semantic difference isn’t what really concerns me, though. I’m much more interested in why it can be so hard to do that, especially considering it is our health at stake. Maybe some of you aren’t ever plagued with momentary meekness, but I’ve definitely had encounters where I’ve had to double check or question something and before the words are out of my mouth my face is flushing a bit.

I don’t want to be annoying. Or condescending. They are the ones with medical training, not me.

(And do I really want to annoy someone who’s coming at me with a needle?)

I trip over my own words with “I don’t mean to be a pain” and “I just have a quick question” and “I’m not sure, but I think…” when of course, I am pretty sure. I’ve been through the revolving door of hospitals and doctors’ offices my entire life. I’ve learned some things along the way, like where the best veins for IV lines are, how many nebulizer treatments I need to have before they actually start to help, or that one medicine in particular is the only one that stops my nausea after anesthesia.

There are the obvious times when it’s easy to be assertive, like the time I was sent for the wrong test on the wrong body part with the wrong patient ID number (hello, HIPAA!), or the time my doctor ordered chest PT three times a day while I was an inpatient and I hadn’t gotten any. But the less egregious encounters are the awkward ones…which is weird, right? I mean, I don’t have a problem sending back the wrong coffee order, or double-checking that the security tags have been removed from newly purchased clothes, or repeating the take-order over the phone when I sense the person on the other end may have missed something.

Surely looking out for my body is more important than latte orders, security tags, or garden salad versus spinach salad?

And that’s exactly the problem—it is so much more important. One could argue that part of the problem is the leftover vestige of the patient-practitioner hierarchy where the patient’s job is to sit still and defer all authority, but I don’t think that explains it. I think deep down it’s a question of vulnerability, too. Despite how much we know and the wisdom we’ve accumulated, in these situations we still need to rely on someone else to do what we need done to feel better. Once you’ve crossed over that very real physical boundary and let someone in, it’s not always easy to admit a lack of confidence in what they’re doing.

* * *

On another note, Grand Rounds is up at Rickety Contrivances of Doing Good, where my post on the role narrative plays in the doctor-patient relationship is featured as the first post. Susan did a great job with a really compelling theme, so be sure to check out the posts.

A Healthy Narrative

Posted on March 12, 2007 by ledwards

In Illness and Culture in the Postmodern Age, David B. Morris highlights this distinction between disease and illness: “The power to make us sick or well inheres not only in microbes or medications but in images and stories…the main assumption underlying the distinction between between disease and illness is that knowledge falls into two broad categories, objective and subjective” (36-37).

While many things within this quote (and, in fact, his entire book) interest me, for the sake of this particular entry, I’m intrigued the idea of stories and their relation to this division of knowledge into subjective and objective…basically, I am interested in the role of the narrator and storyteller.

As a patient, the role of storyteller is so important. We bring our subjective experiences with illness—the actual process of living with conditions—to our doctors, who hope to match up what we tell them with a different type of knowledge, science. So the details we choose to disclose, how we disclose them, and the narrative we establish about our illnesses often shape our diagnostic journeys. Certainly there are countless tests out there whose results can confirm, refute, or re-cast our stories, but what we describe to our physicians sets the whole process in motion. If I say I generally have pain and fatigue or I say I have pain in my trunk accompanied by muscle weakness and tenderness that worsens after exertion, then I am giving my doctor two different avenues to explore that might share some similarities but can lead to very different destinations.

So what does it means to be the storyteller? It should be pretty easy, right? But that’s not always the case. I know from firsthand experience that assumptions, fears, and self-consciousness can really affect what I say and how I say it: I don’t want to sound like a complainer if I list too many symptoms, I don’t want to seem like I’m making a big deal out of nothing, I don’t want to deal with more tests so I might not mention certain problems I’ve noticed. In addition, despite my best intentions and the short lists I’ve made in preparation, sometimes I get so wrapped up in a particular conversation with a doctor that I forget to touch on other details…we’re threading a different narrative line and I’m unable to shift its focus.

My incomplete narrative may be authentic to my subjective experience in many places, but it is not whole. But can it ever be?

As a writer, the role of the narrator and storyteller is inherent in every step of the writing process. In order to create atmosphere, emotion, or a factually accurate account that is concise enough, we’re constantly choosing certain details and facts over others: what does my reader need to know about the background of a situation to understand a current dilemma? If I’m trying to illustrate a particular aspect of a relationship or make a specific point, what other information about the dynamic do I need to cover? If I’m writing about a scene where something good happens, is it disingenuous to leave out negative moments that were also part of the back story if they interfere with the true (but incomplete) moment I am describing?

And of course this process is filled with the same types of obstacles that occur when we’re asked to be narrators of our illnesses: how do I come across to my reader? Does the situation I have described make sense or does the reader need more information? Will I hurt or offend anyone I have portrayed? Will anyone care about what I have to say? I am the one deciding which facts to include, so even if my finished product yields a cohesive storyline, I know it might not be a complete one.

This tension is not unique to the position of patient or writer, but since I exist within both modes, it’s interesting to look at how they intersect. I think there will always be that push and pull between the subjective (our experiences) and the objective (science, facts, historical record), but that’s what makes both medicine and writing so dynamic.

Posted on September 17, 2006 by ledwards

Just Say No

For a brief time, I completely forgot that as a patient, I have the right to say “No.”

For years, I’d been conditioned to follow the prescribed regimens and treatment protocols handed to me by a variety of specialists. I was an informed patient—I knew the technical terms for body parts, I knew the correct medications for different conditions, and because I knew my endocrine, respiratory, and autoimmune systems better than anyone, I knew when to question the experts.

Because I had knowledge, I had power. While I spent a lot of time undergoing procedures and shuffling from one office to the next, I knew why I was doing it, and I agreed with the rationale.

This isn’t to say I had become smug, but over the years I had definitely acquired an air of confidence and even authority as a patient. I respected my doctors and their vast body of knowledge, but I realized that in my own way, I had a lot of expertise as well.

And then I entered a new specialist’s office—in this case, a fertility specialist—and any confidence or knowledge I thought I had quickly disintegrated.

I found myself nodding meekly to rapid-fire assessments of my ability to have children, and all sorts of terms and conditions washed over me. I stumbled to wrap my mind around the new words and their implications, and I was always one step behind the physician.

I left the brief consult with a daunting list of blood tests, procedures—some simple, some fairly invasive—and names of other sub-specialists with whom I needed to schedule appointments. I waited in the hall for my blood to be drawn—at least I could cross one task off of my To Do list that same day—feeling completely overwhelmed and completely out of my element.

“This must be what it feels like to be a new patient,” I thought to myself, having never been in this position before.

We were on a mission to rule out every single possible fertility problem first, theoretically making it easier to know what was wrong if I tried to have children and it didn’t work. I’d played this diagnostic game of exclusion before for other problems, but I’d always had symptoms or some sort of evidence to back up these expeditions.

Now, all we had was the knowledge that most people with my respiratory disease, PCD, have trouble having children because like the cilia in the respiratory tract, the cilia in the reproductive system either did not work or did not exist. There is no test or way to find out for sure if this is the case for me, an irony because of all the tests laid out for me, this is the one I really need.

Dutifully, I had my blood drawn. I made appointments with reproductive endocrinology and fetal medicine high-risk specialists, agreeing that it made sense to assess my risks and my medications well before I was planning on having children.

And then it came time to schedule a particularly invasive and painful procedure, one that would rule out a condition no one for one second even thought I had. The procedure itself wasn’t something I’d heard of before or knew anything about, but being a diligent patient, I tried to figure out a time to have it that didn’t conflict with my numerous other appointments, my physical therapy, my teaching, my writing, and my “down” time.

Then I stopped and thought about it, and about all the time I had carved out for exams and consults and procedures and surgeries over the course of my lifetime, all the sacrifices of time and inclination I made to do what was right for my health, what would give me answers I needed.

And I decided this wasn’t one of them. I barely had enough time to do the things I wanted and needed to do; an invasive procedure to confirm I didn’t have what we already knew I most likely didn’t have simply wasn’t a priority right now. Maybe down the road it will make more sense and yield the kind of information we needed, but not now.

“Can I do that? Can I just say, ‘No thanks, not right now. We’ll shelve this one for later?’” I asked my chest physical therapist as the test day loomed nearer.

“Of course. It’s your body and your decision,” he said, surprised that I even had to ask since the old me never passively accepted medical advice at face value.

As if snapping awake from a trance, I realized he was right. Simply because the option was there didn’t mean I had to select it, or that saying “No” meant I was somehow a difficult patient or consumer. Saying “No” meant doing what was best for my body and my spirit based on the facts at my disposal. Even if the procedure and all the terms weren’t things I knew well, I still had a lifetime of experience to help me make my decision.

Laurie Edwards

Writer, Teacher, Advocate

Category Archives: Patient-Doctor