A Better Place

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dissecting a Diagnosis

Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

Women and Health Care: Are We Feeling Better Yet?

Since writing and publishing Life Disrupted, I’ve paid special attention to books and anthologies that deal with the patient narrative. (I have a more in-depth exploration of narrative medicine and a list of suggested titles if you’re interested.) This spring I reviewed Everything Changes, a book about young adult cancer patients, and found the similarities between young cancer patients and young adults with chronic illness compelling.

More recently I had the chance to read
Are We Feeling Better Yet? Women Speak About Health Care in America, edited by Colleen McKee and Amanda Stiebel. With a forward written by my friend and colleague Jenni Prokopy of ChronicBabe and a submission from one of my favorites, Paula Kamen, I was especially excited to jump into this diverse collection of essays. Here again I found the universal questions and insights that came out of very different experiences with illness and health care to resonate the most.

When I hear the phrase “health care in America,” I instinctively expect a lot of facts and figures: how much chronic disease costs have risen, insurance premiums and co-pays, political debates over mandates or Medicare reimbursements, how many Americans remain uninsured or underinsured. Let’s face it, the system is confusing quagmire of contradiction and disparities, and much of what we read about is analysis or opinion about these issues.

While facts and figures are seminal to health care reform, I have always believed in the equally compelling power of the personal narrative. Regardless of differences in diagnoses, treatments, ethnicity or geography, these women’s stories all reveal frustrations, challenges, and insights that speak to the central question linking these 21 essays together: Are we feeling better yet? As the editors write in the introduction, “To even to begin to answer that question, the patient’s voice has to join the conversation. She can’t be entirely spoken for by charts, case studies, shiny magazine, politicians, physicians, pharmaceutical reps. For genuine healing, we must tell our stories—and hear them—in a way that is honest and real, even when the truth is ugly, unladylike, and sometimes, not even nice.”

It was with that expectation of unflinching narrative that I dove into the essays, and as a patient and a writer, I was not disappointed. I’ve come to expect topics like poverty, racism and health disparities, and inefficiency and bureaucratic stalemates to be a large part of the patient experience and a necessary part of any discussion. However, I was glad to see this (unfortunately all too familiar) terrain handled so well, revealing nuances to these universal problems that remain in my mind.

Terri Griffith’s wry rumination on “free care”—a merry-go-round of pushing papers and passing the buck that left her without therapy for depression and wasted a lot of time and resources, made me clench my teeth in frustration for her. The staggering wait times (up to eight hours) and dilapidated conditions Birgit Nielsen witnessed at a Los Angeles county clinic for women was bad enough; the shocking racism her doctor displayed towards Spanish-speaking immigrants and the preferential treatment her white skin afforded her was worse. Based on these experiences, we certainly have a ways to go in terms of providing quality care to everyone.

In “A Slight Case of Hypomania,” Anita Darcel Talyor writes about living with mental illness and the constant choice between paying for treatment or paying to live her life, between remaining untreated or living in an overly medicated, dulled state. But her personal negotiations give rise to larger questions:

“Sometimes I wonder if normal isn’t a myth, a state of magical realism, a place of the imagination against the backdrop of lies. Is normal a thing of the middle class suburban family? Is it as chic as the gay city dweller? Is it middle American red or coastal blue? Is normal the adjective of the elusive mainstream? Can I be normal with a diagnosis? Is it normal to be educationally elite yet live in poverty? Can I be normal if I am fat?” (58).

Moments like these, when the many universal complexities of the patient experience are laid bare, are the ones that resonate most with me. I’ve heard the policy wonks, I’ve read the Op-Eds, and I’ve and stared at the numbers. They are important, but they don’t get at my core like these moments do. Whether it’s receiving a life-altering diagnosis or a delayed diagnosis, having to choose between personal belief systems and those of the medical establishment, or being privy to the insider survival tricks and processes of cancer treatment, the personal insights these writers provide do much to illustrate where we are—and more importantly, where we have to go.

Some essays speak more directly to the question of “Are we feeling better yet?” than others, and personally those are the ones I enjoyed the most. I started the book wondering if it was merely a foregone conclusion that we can’t really be feeling all that better yet; after all, if the system was working well we wouldn’t need analysis and Op-Eds and consensus talks. But I finished it feeling encouraged. These stories aren't always pleasant or easy to read, and that's exactly why we need them. We can learn from them and draw from them as empowered patients and advocates…and that’s certainly a step in the right direction.

Disease Prevention and the 4th Summit Conversation

Since I spent yesterday talking about health insurance, it seems fitting to switch gears to another health reform discussion: the fourth America’s Agenda Health Care Summit Conversation, happening today at 11am PST at the University of California San Francisco.

I’ve mentioned these Summit Conversations before, and I do so again because I find the idea of consensus in health care reform both utterly essential and hard to envision. Yet it isn’t as hard to achieve as we used to believe, or perhaps as past attempts at health reform would have us believe. After all, the diverse group of speakers who come together for these talks, from labor, government, health policy, pharmaceutical, and other stakeholders, prove that there already is consensus: all sides agree we need to reform health care, and now is the time. Talks like these are a way to start hashing out how exactly that reform should happen.

As a patient with multiple chronic illnesses, I’m always particularly interested in how these stakeholders approach disease prevention. Considering that 75 percent of health care spending goes to treating patients with chronic disease, switching from a system that still favors treating acute health crises over prevention and wellness—a “sick” system, rather than a “health” system, as some Summit leaders have said—is critical.

And of course, as a rare disease patient, I’d like to see this notion of prevention now to control costs and improve quality of life later include covering the appropriate treatments we need to prevent disease progression, a distinction that matters to millions of people who live with conditions that are not as heavily influenced by lifestyle and behavioral changes.

To see what some Summit speakers have to say about disease prevention, check out the video below, and browse other YouTube videos on topics covered in these talks.

Talking Health Insurance

So a few days ago I watched the Talking Health webcast on health insurance, presented by the Association of Health Care Journlists, The Commonwealth Fund, and the CUNY Graduate School of Journalism.

I listened both as a journalist interested in how to cover this controversial issue, as well as patient with an obvious vested interested in health insurance reform, and the discussion did not disappoint on either count.

For the purpose of this post, I’ve decided to highlight some of the points/questions I think matter most to readers and patients with chronic illness—after all, a key to managing chronic diseases and preventing disease progression is having health insurance that covers medications and appropriate treatment therapies. And, as the NYT’s Reed Abelson, one of the four panelists, pointed out in talking about stakeholders in this debate, patients are the most obvious source but are not well represented.

Do we really know what the difference between public and private insurance is? While some people do, and they usually equate private with better care when they do, many consumers aren’t sure what the public option really entails. According to panelist Cathy Schoen, senior VP at The Commonwealth Fund, context is important here. She says the type of plan usually mentioned in national reform would offer for the first time to people under 65 a plan that is similar to Medicare, one that could compete with private care. The goal of this type of plan is to provide better access and control costs, and consumers would have the choice to keep their existing (private) insurance or choose this new public option. The public option would be standardized across the country and wouldn’t change much over time.

Bruce Bullen, COO of Harvard Pilgrim, a nonprofit managed health care organization in New England, points out some of the pluses and minuses with public vs private insurance: For example, private insurance companies focus on customer service, network building with doctors, and are inherently local/regional, while public ones are more standardized, easily understood, more regulated and perceived to be more equitable.

Other benefits and drawbacks we should consider? The public plan would offer lower premiums, which is attractive to consumers. At the end of the day, we need to control soaring health care costs; advocates of the public plan point to its purchasing power as an advantage, since it would be purchasing for such a large population. Its economies of scale and lack of a need to market itself are also positives. Since healthier competition usually means cost would come down, the public plan could potentially be cheaper. As we know, private sector rates are higher ($12,600 is the avg family premium), but Bullen contends that well-organized plans like HPHC have such mechanisms where they can be quite competitive with public rates.

But is it possible for private plans to compete with public options? At 20-25 percent cheaper than private plans, Bullen says probably not, pointing out that these savings do not mean the public plan would control health care costs. If we’re making the comparison to a Medicare-type system for people under 65, consider that providers often can’t live on what Medicare pays so they move to private insurers for competitive rates. The cost and quality problems that are so widespread now would continue. Also, consider if providers are asked to sign on for less, would they? Or would the government mandate participation?

Whether through a public plan or a private one, Cathy Schoen asserts that we need to be paying for care differently. To do this, we should harness the technology we have but do so with clear outcomes in mind and in the right circumstances. Appropriate technology requires more incentives, which we don’t have right now. In essence, we need to ask: Is it better, and do we have to pay as much for it?

More thoughts on public plans:The term public plan means different things to different people. Some key variations within that term include a federally sponsored new plan to market or a plan that piggybacks with Medicare. It’s the sponsorship that is critical. Medicare uses private claims payers and pools risk, and one of the biggest fears and strengths of the public plan is that it pools risks.

What can government do if doctors refuse to treat people with the public option? Cathy Schoen agrees this is a critical issue, especially since it’s known that Medicare pays far too little for primary care. The public plan would have to come in with competitive rates and if everyone was insured rates between the two wouldn’t be as different because right now we’re already paying for those who don’t have care at all.

Would the public plan become dumping ground for sickest people? Schoen says it is a risk in a reformed insurance market where no one could be turned away or told they are too sick. Things like age variation where a 50-year-old could say “don’t ask me about health status just sign me up” would help combat this, but we still have to worry about risk selection; as soon as you have competing plans, no matter the name of them, this is still a concern. The way to address it is by rewarding plans.

How will public plans affect the innovation US is known for? According to Bullen, it will negatively impact innovation. One of hallmarks of private care is responding to consumer needs and giving answers that work. That’s a big tradeoff—public plans have other strengths, like standardization and equity.

Anyway, these are just some summarized snippets I felt brought up compelling points on both sides. While it’s a huge issue and has everyone talking, there are so many details, variables, and benefits/drawbacks involved in any type of reform that it’s helpful to hear some of them explained in accessible terms. The terms “public option” or “universal health care” spark so many competing emotions and definitions, from some people imagining hybrid plan like we have here in Massachusetts to conjuring up a single-payer system more comparable to Canada or the UK. For what it’s worth, I found the discussion of a public plan similar to Medicare but for younger people a helpful way to frame the inevitable comparisons between private and public insurance plans.

(As an aside, the second segment with the LAT’s Noem Levy and Reed Abelson was great, so if you’re a writer wondering how to find sources for this and what other questions to consider, definitely check it out.)