Category Archives: Chronic Illness

The Words We Use: Language and the Patient Experience

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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?

Virtual Conference for Invisible Illness Week

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Just a quick reminder that as part of Invisible Illness Week I will be holding a virtual conference on Blog Talk Radio on Friday, September 12 at 3pm Pacific time. The topic is “Friendship, Dating and Marriage: Can You Keep It All Together When You’re Young and Chronically Ill?”

Directions for how to listen to the presentation online and how to call in and ask questions can be found right here. I hope many of you will call in and make this conversation more dynamic!!

Lastly, because I can’t just leave you without any good reading material, check out this Boston Globe article on a new study that shows numbers dwindling for primary care doctors. One of the major reasons cited? The strain of chronic disease patients.

The Invisible Illness Week Post: What’s in a Word?

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I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)

After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.

Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”

This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.

(And yet I assume they are noticing or caring, so really, whose problem is it?)

I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?

But there’s more this invisible illness phenomenon, something I touched on in last year’s post on Seeing the Scope of Invisible Illness–the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.

I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.”

(And yet I am assuming they are noticing or caring, so really, whose problem is it?)

It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.

So in the end, parsing out the implications of invisible illness leads me to another, equally powerful word:

Understanding.

It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.

On Being Better Patients—The Follow Up

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My last post on how to be better patients to each other stirred up some conversation—turns out (once again) that despite differences in diseases and symptoms, many things unite us, especially when it comes to waiting rooms, hospitals, and emotionally-charged situations.

As a follow-up to that conversation, I want to explore an issue one of my readers brought up in the comments section, something I touched on very briefly in the post—the idea of illness as a competition. “Illness isn’t a competitive sport” is the exact phrase that comes to my mind, and until very recently, I wondered how widespread the phenomenon was. Was it a dirty little secret of life with chronic illness, something that occurred in waiting rooms across the country? Or was it something more unique to the particular doctor’s offices I frequented? Judging from the initial response, I suspect the former is the case.

You know what I’m talking about, right? You’re sitting in your chair, perhaps leafing through a magazine or engaging in idle conversation with other patients in the room. Somehow the conversation around you turns into a bizarre sort of one-up-man-ship, with patients swapping war stories, surgery tales, and escalating degrees of complaints. The tenor has changed from surface-level camaraderie to a competition.

It’s an interesting phenomenon. I’ve never seen it get to the point where there’s almost a fight over whose symptoms are the worst, as others have mentioned, but I have seen it get pretty intense. Most times I ignore it, but sometimes it gets to me and I cannot wait to be called back just so I don’t have to hear it. It’s stressful to sit there and listen to so many things that are wrong. After all, everyone’s got something, or none of us would be there.

My reaction has always been, who would ever want to win the “sick” competition? That just doesn’t seem appealing to me, or worth it, or in any way productive. And I have to believe that no one really does want that title.

Obviously illness can be really isolating, so maybe people are just lonely and need some place to vent. Maybe they’re in a tough phase of acceptance or adjustment and their symptoms are especially overwhelming. Maybe their illness is a huge part of their identity and in the moment, someone else’s condition is somehow a threat to that identity. Who knows. But I don’t believe there’s any maliciousness or mean-spiritedness in it, and I don’t think it’s even an intentional escalation or competition.

And I think it’s just normal human nature to hear something and think, “You think that’s bad, how about X?” I know when I’m at my rheumatologist (which, for whatever reason, is where it happens the most) and listen to the back and forth I sometimes think about someone I know who’s had multiple major (invasive) surgeries and excruciating, degenerating pain and think these people are actually pretty lucky.

And clearly that’s not fair of me. Other people’s pain and illness are still very real and altering even if they don’t seem as severe as someone else’s. (And I say “seem” because really, you never know what someone else life or situation is truly like.)

At the same time, I’ve also felt funny even coughing at my lung specialist’s because I know there are some seriously sick people treated there, people waiting for transplants to save their lives, people who cannot live without constant oxygen, people I know are so much sicker than me. (They’ve never made me feel that way—most don’t even talk, it’s just a self-consciousness I feel).

And that’s not fair either, because this isn’t a competition and no one need apologize for not being as sick.

And I think the reason both those instances aren’t fair is what I will call Rule #7—No one has a market on suffering. Especially when we’re at the doctors, and we’re probably all a little anxious, and no one’s feeling all that well.

Especially when you consider the saying posted over on Hemodynamics:
“Be kind, for everyone you meet is fighting their battle too.”

Whaddya think?

The Patient-to-Patient Relationship

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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.

Education, Disrupted: An Update

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This past May I wrote about the challenges college students with chronic illness face in terms of achieving their goals and staying enrolled. I also wrote about the great work the Chronic Illness Initiative at DePaul University is doing to help students overcome these challenges.

As an update to that post, I’m happy to pass along this news story about Michelle’s Law, a bill passed recently that, according to the Boston Globe “would allow allow seriously ill or injured college students to take up to one year of medical leave without losing their health insurance.”

It’s sadly ironic that in cases like this, students with serious conditions who are trying to treat their illnesses or recover are often penalized by losing the very insurance they need to survive. That’s why this legislation is exciting, promising, and…logical.

Who would have guessed it?

Mid-Week Resources

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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.

On Interstate Dining, 80s Music, and Caregivers…

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This weekend we completed our first road trip of summer 2008—twelve hours to Michigan for a family function, and twelve hours back just in time to pick up the dogs at their kennel and get to work.

Radio stations and rest stops are the only things that break up the monotony of long car rides—well, that and crossing the Canadian border each way. I know all about the tips for eating gluten-free while traveling in the car, and I dutifully pack nuts and trail mix, bottled water, and fruit.

(I’m irrationally militant about consuming greens at every meal, and after doing this route for a few years now, I can vouch for the Lee, Massachusetts service area with a Fresh City and the Pembroke, NY service area with a Fuddrucker’s as A Chronic Dose-approved salad stops.)

While we may have stocked up on gluten-free snacks, we forgot to bring our iPod adapter or CDs so it was all radio, all the time. In a freakish coincidence that defied station, state, or even country, every single different station that came in played 80s tunes—REO Speedwagon, Chicago, and lots more. Seriously. The songs totally brought me back to my childhood, to driving around in my mother’s cream station wagon, my legs sticking to the leather interior in the summer’s heat.

But we heard one song that has a particularly vivid and visceral memory: “The Power of Love” by Huey Lewis and the News. Whenever I hear it—and this past weekend was no exception—Bam! I’m five years old, a couple of weeks into my several-week stay in isolation due to a serious staph infection spreading from my ears to my brain. It’s brashly sunny in my white room overlooking the Charles River, and I am bored.

There was a playgirl on my floor named Mimi—I’m sure that wasn’t her official title, but that’s what I called her in my head—and since I couldn’t go to the playroom with the other peds patients, she brought special toys and games to me. One time, she brought a small radio and played that song. I still remember her strawberry blond curls and pale skin, still remember the effort she made to bring a little bit of fun into my life.

(As an aside, it’s no irony that the summer before college I volunteered with the Child Life department at Boston Medical Center, where I learned how to engage in therapeutic play on an in-patient floor…and it’s no coincidence that I loved it.)

Anyway, all of this road trip reminiscing is going somewhere, I swear. Clearly I had hospitals and caregiving on my mind this morning when I read this post on Running a Hospital, a note from a family member of a hospital patient who wanted to highlight the exceptional care certain nurses and physicians gave her relative.

I’ve always said it’s the nurses who make or break a hospital stay, and I firmly believe that. They are the ones who attend to our immediate needs, who spend a lot of time reassuring family members and answering questions, who are our advocates and caregivers, and whose gestures, however big or small, can make such a difference in our quality of life as inpatients.

I’ve had nurses who’ve stayed late to give me chest PT when respiratory therapy couldn’t make it, or who brought decorations and festive platters of baked goods and flowers from their own holiday celebrations to cheer up the floor. I’ve had nurses who’ve made me laugh when I desperately needed to, who’ve made me feel comfortable despite extremely uncomfortable symptoms and circumstances, who’ve treated my friends and family as warmly as I would.

I’ve also turned a sharply trained eye to the nurses in charge of the people I care about. Like the letter-writer in the post I mentioned, I’ve appreciated—and remembered—the nurses who soothed their anxiety, prioritized their worries, and responded to their concerns and fears with dignity. I’ve taught several sections of nursing students, and I am always impressed with their passion and enthusiasm for patient care, passion they bring to their classroom discussions and their research projects.

So while the weeks I spent in isolation as a little girl aren’t the best memories I have, certainly, the memory that classic 80s tune conjures up is a good one—it reminds me that for however overwhelming the hospital can be, there are doctors, nurses, physical therapists, child life specialists, and many others whose actions remind us we are people, not solely patients.

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Speaking of nursing, interested in basic information on the nursing shortage or chronic illness nursing programs? Check out these links. Just a little bit more summer reading…

An Open Mind

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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…

Following Up on Living Proof…

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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.