Politics, Sports…and Chronic Illness?

Posted on October 21, 2008 by ledwards

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!

Language and the Patient Experience: The Follow Up

Posted on October 8, 2008 by ledwards

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!

Life Disrupted Reading Event on Thursday!

Posted on September 17, 2008 by ledwards

Just a quick reminder to local readers that Rosalind Joffe and I will be reading and doing Q&A at Newtonville Books this Thursday, September 18 at 7pm. Hope to see you there!

The Words We Use: Language and the Patient Experience

Posted on September 16, 2008 by ledwards

So ever since my post for Invisible Illness Week last week, I’ve been thinking a lot about words. Not just any words, but the words involved in the naming, labeling, understanding, and defining of the patient experience:

Illness. Disease. Condition.

When I was first diagnosed with PCD a few years ago, in some ways my world was now divided into a “before” and “after”—for someone who has been sick since birth, this was certainly a novelty. The disease name took all my symptoms, surgeries, and various other complications and wrapped them up into a neat package. As I wrote in Life Disrupted, for the first time, my disease label actually reflected my experiences.

This didn’t mean my physical symptoms were any different after I had a label for them, but they made more sense. I know for patients who have struggled with diagnosis for years, finally having a name for their symptoms can be incredibly validating. It also confers membership in a community of patients with the same symptoms and struggles, which, given the isolating nature of some chronic illnesses, is important.

My new label also meant a huge difference in my quality of life and treatments. After all, if you know what it wrong, you can then learn what you can do to help treat it and perhaps even prevent progression.

It’s not a conscious decision, but I’ve never used the term “chronic disease” when speaking about health situations. I’ve always said I have chronic illnesses. Again, this was never a deliberate choice of words, but in David B Morris’s >Illness and Culture in the Postmodern Age, the author makes a distinction I’ve found really interesting, and related to this: disease is the stuff of doctors, researchers, and objective data and test results, while illness reflects the subjective experience of the patient who lives with symptoms.

This distinction also makes a lot of sense to me. While I think of PCD as a disease, something with a specified symptoms and diagnostic criteria, I think of my experience with PDC (and bronchiectasis, etc) as something entirely different. The disease is a definition or explanation, something removed from my identity as many things, one of which happens to include the word “patient.”

On the one hand, I think this use of the term “illness” can be productive, because it introduces the person into the scientific classification of symptoms, and it inevitably factors in the many aspects our lives impacted by our health—family roles, employment roles, etc. But I know there are patients who consciously choose to say they have a “chronic condition” over the term “chronic illness,” and I find that equally interesting. Is it because “illness” conveys something weak or something permanent, while the more neutral term “condition” connotes something temporary and just that, neutral?

And of course, if we’re going to parse out the semantic of illness and disease further, there’s the word “chronic” itself. As researchers and patients alike have pointed out, there certainly aren’t a lot of positive implications associated with the word “chronic.” Think about it—people don’t say they’re chronically happy, or chronically hopeful, or chronically joyful. They just areBut you do hear things like “chronically depressed” or “chronically unemployed,” etc.

But taken at its fundamental definition, the word “chronic” absolutely fits in with living with things that are treatable, not curable. They will always be there, but some periods they will flare or be more pronounced. In my case, there will never be a day I don’t have PCD (or any of my other problems) but that doesn’t mean they’re pronounced or problematic all of the time. It’s the intermittent nature that makes the term applicable. (Granted, progressive diseases mean that ratio of pronounced versus negligible changes, but still.)

Anyway, what I’m interested the most in all of this are your thoughts. Do you use disease, illness, and condition interchangeably, or do you have a preference? If so, why?

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.

Mid-Week Resources

Posted on July 30, 2008 by ledwards

Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.

Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I’m thrilled to see growing attention towards this phenomenon.

Following Up on Living Proof…

Posted on July 16, 2008 by ledwards

In a nice coincidence, I did an interview with Deborah Harper of Pyschjourney today that emphasized many of the themes in my previous post–a pioneering generation of adult patients; the impact of spousal caregiving on younger marriages; transitioning into adult care as a younger adult, etc. While cystic fibrosis is by no means the only example of this type of disease whose population is truly re-shaping medicine, it is a great example nonetheless. Of course we talked about lots of other stuff, too, and you can click here to download the podcast.

Living Proof…

Posted on July 15, 2008 by ledwards

Before I jump into this post, I want to take a moment to thank each of you who showed up to my reading events last week. The show of support at Porter Square Books was truly overwhelming—it was a standing room only crowd, and we sold out of all the books and dipped into special orders. Many thanks to everyone who showed up; it was great to see familiar faces, and equally great to see and hear from so many of you I’ve never met before.

One of the questions I am asked often, and one of the things I spoke about last week, is why I wrote Life Disrupted. The short answer is that I saw a real need for it. While there are many more details and nuances to that statement, that one simple sentence really does sum it up. I saw a population of younger adults with chronic illness that was much larger than most realized. Patients with serious childhood diseases are living longer into adulthood, and many otherwise healthy patients first manifest chronic and autoimmune conditions in their twenties and thirties.

Within that diverse patient population, I saw so many important trends that weren’t being written about in a substantive, mainstream way. Two of those trends, and arguably two of the most compelling and complicated ones, include the impact of spousal caregiving on younger marriages and the “can versus should” debate in terms of people with chronic illness having children. I was fortunate to find patients whose experiences speak to these issues, including patients with cystic fibrosis (CF), among many various illnesses covered in the book, and I learned a lot from them.

So why am I telling you all of this right now? Because this week I was also fortunate to stumble across this blog, Confessions of a CF Husband. It’s an engrossing, honest look at one family’ journey through the wife’s double lung transplant and the premature birth of their very-much-hoped-for baby girl, a high-risk pregnancy situation indeed. Their struggles and triumphs are inspiring and sobering, and their realities mirror those of a generation of patients with the power to truly redefine how we perceive people with serious disease.

The Carrie Bradshaw of Chronic Illness

Posted on June 30, 2008 by ledwards

So my apologies to those of you who’ve seen it or read it or follow Life Disrupted on Facebook, but I wanted to quickly post a link to a profile of me that appeared in Saturday’s Boston Globe.

Apparently, I am the Carrie Bradshaw of chronic illness!?

Manolo Blahnik, where have you been all my life?

A real post, complete with action photos and musings on routines and why we need to break them to follow…

Laurie Edwards

Writer, Teacher, Advocate

Category Archives: Life Disrupted