On Work and Chronic Illness

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It’s been a tough blogging spell lately. Not for lack of topics—I have a running Stickie note of links and ideas on my desktop—but more a lack of focus or creativity. Sometimes being pulled in many different directions and having many different things to talk about can have the exact opposite effect of what I’d like as a writer.

In fact, I’ve started and stopped at least three different posts since Tuesday. And then a link to this article in February’s More magazine appeared in my inbox, and suddenly I knew what I needed to write about.

The article is called “Ill in Day’s Work” and, as you might expect, it explores the challenges of chronic illness in the workplace. (It’s written by Donna Jackson Nakazawa, author of the excellent book The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance–and the Cutting-Edge Science that Promises Hope).

The article itself is informative and encouraging, and covers many of the “macro” issues of employment and chronic illness—disclosure, financial compromises, discrimination, etc. Many of these issues are ones I discussed with my colleague Rosalind Joffe for Life Disrupted, and though this article focuses on women a bit older, the universals resonate compellingly.

But those big-picture items are not what I want to discuss today. I’ve done a lot of compromising and negotiating and finagling already, and for now I think I’ve patched together a career path that works for my skill set, my long-term goals, and my health.

However.

It’s the everyday, smaller stuff that resonates with me these days. For some context, I’ve been really quite sick since before Christmas, with the exception of a few days in the middle of January. Sicker than usual, sicker than I have the patience or tolerance for, sick enough that I was on nebs hourly for awhile. (I haven’t written about it because there really isn’t a point; this is winter for me and there’s not much interesting to say about it.)

This winter’s malaise has made staying engaged in my work difficult. The issue of physically being able to get to work is one thing. Luckily some of this happened over winter break; luckily no one minded when I had to cancel class(which I never do); luckily my students are patient with my weeks-long constant coughing and my lack of voice; luckily I work from home a couple of days a week; luckily my husband meets me to help me get home when I cannot make it back on my own.

Because I am finally starting to feel better, I can see the toll this semester has taken. I have not seen my friends in almost two months. I’ve missed all holidays and most family events.

More than that, it’s like I’ve been working in a tunnel, where I am so focused on getting through the day and making it home that I don’t have the mental or physical energy to be as productive as I’d like. I worry I’m not as “on” as I’d like to be in class, I worry I’m not as clear-headed when I get home and try to finish articles on deadline or finish research for a big project. The article mentions lost networking opportunities after work as a result of chronic illness, and I found myself nodding. Lately I haven’t even wanted to talk on the phone at night, never mind make it to functions.

However. (Again.)

I’m beginning to emerge from the hibernation, and so I’m beginning to see beyond the tunnel vision of merely getting through the day. This mish-mash of several different jobs, seven-day work weeks, and unconventional hours has been carefully thought out and planned with the future in mind, and while some winter days are darker than others, most of the time it works for me.

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Nurses and Patients

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I’ve written about the doctor-patient relationship often. Whether it’s the need for communication and mutual respect or why primary care is important for patients with chronic illness, there’s much to say about this incredibly important relationship.

But when I read “Can Nurses Care Too Much?” in yesterday’s NYT, it occurred to me that I haven’t written as much about this other incredibly important relationship: nurse-patient.

In my personal life, I know a lot of nurses, and know how invested they are in their jobs and their patients. In my professional life, I often have nursing students in class and am always impressed with how engaged they are in what they do and how animated they become when patient care is discussed.

But it is in my patient life where I really see these qualities firsthand. For long stretches in my life I’ve spent several weeks a year as an inpatient, and from all those trips I can say this:

Nurses are the ones who can make (or break) a hospital stay. They are the ones who make sure my nebulizer medicines arrive on time, who jump in to give me chest physiotherapy if the physical therapist on the floor is tied up with someone else.

They are the ones whose conversations keep me distracted or encouraged, depending on what I need, and the ones who know that sometimes, visiting hours just don’t apply. In college, they calmed down my worried parents when I was an inpatient several states away, and they know that for someone who types all day long, getting an IV on the top of my hand is less than ideal.

Sure, I’ve had some negative experiences, just like I’ve had some doctor’s appointments I’d rather not repeat again. But the vivid memories, the faces and names and actions that stay fresh in mind, belong to the many nurses who have made serious medical situations a lot more tolerable.

Can nurses care too much?

That’s a pretty difficult question to answer because giving care can be such an emotional experience. (Be sure to read the NYT article, because the nurse-writer covers this poignantly.)

But what I do know is that when I’m wheeled onto a floor and my nurse comes in to greet me, or when I’m visiting a loved one and I see how compassionately and confidently their nurses speak with them, I am really glad that they do care.

***
In unrelated news, I just found out this week that Library Journal named Life Disrupted one of 2008’s Best Consumer Health Books. Check out the full list for some great titles.

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Nurses and Patients

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I’ve written about the doctor-patient relationship often. Whether it’s the need for communication and mutual respect or why primary care is important for patients with chronic illness, there’s much to say about this incredibly important relationship.

But when I read “Can Nurses Care Too Much?” in yesterday’s NYT, it occurred to me that I haven’t written as much about this other incredibly important relationship: nurse-patient.

In my personal life, I know a lot of nurses, and know how invested they are in their jobs and their patients. In my professional life, I often have nursing students in class and am always impressed with how engaged they are in what they do and how animated they become when patient care is discussed.

But it is in my patient life where I really see these qualities firsthand. For long stretches in my life I’ve spent several weeks a year as an inpatient, and from all those trips I can say this:

Nurses are the ones who can make (or break) a hospital stay. They are the ones who make sure my nebulizer medicines arrive on time, who jump in to give me chest physiotherapy if the physical therapist on the floor is tied up with someone else.

They are the ones whose conversations keep me distracted or encouraged, depending on what I need, and the ones who know that sometimes, visiting hours just don’t apply. In college, they calmed down my worried parents when I was an inpatient several states away, and they know that for someone who types all day long, getting an IV on the top of my hand is less than ideal.

Sure, I’ve had some negative experiences, just like I’ve had some doctor’s appointments I’d rather not repeat again. But the vivid memories, the faces and names and actions that stay fresh in mind, belong to the many nurses who have made serious medical situations a lot more tolerable.

Can nurses care too much?

That’s a pretty difficult question to answer because giving care can be such an emotional experience. (Be sure to read the NYT article, because the nurse-writer covers this poignantly.)

But what I do know is that when I’m wheeled onto a floor and my nurse comes in to greet me, or when I’m visiting a loved one and I see how compassionately and confidently their nurses speak with them, I am really glad that they do care.

***
In unrelated news, I just found out this week that Library Journal named Life Disrupted one of 2008’s Best Consumer Health Books. Check out the full list for some great titles.

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Health Care Reform: Is the Timing Right?

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A few months ago, I wrote about the economic impact of a health care system run amok, calling it the “other crisis.” When we’re too sick to participate in the workforce, when our employers can’t keep up with skyrocketing costs, when preventable diseases go unchecked and result in costly complications, we all pay the price.

Now, with the recession dominating headlines and the widely circulated fear that health care reform will take a backseat to the economy, it’s easy to dismiss the urgency for significant reform.

Yet I’d argue the stakes are greater than ever, and that now is the time—economic health is inextricably linked to our ability to access and maintain appropriate medical care. I believe this in terms of existing chronic illness, of course, but that’s just one part of it.

Why do I write this today? Because today was the first in a year-long series of “Summit Conversations” sponsored by the America’s Agenda Health Care Education Fund. These consensus-building talks bring together a diverse group of entities—politicians, policy-makers, labor unions, big Pharma. Very rarely do we see these groups united under a common goal.

The January 28th Summit talk was held at the University of Miami and hosted by President Donna Shalala. In a recent Miami Herald op-ed, Dr. Shalala wrote,

“The Summit Conversations commence at an opportune time. Recent polls show three-quarters of Americans expect major healthcare reform legislation to be passed in President Barack Obama’s first term. Democratic leaders in Congress are reaching across the aisle for bipartisan support, and there are promising responses from business and labor.”

Let’s hope she is right, that this is the right time for the right groups of people to come together, build consensus about reform, and turn that consensus into change.

In so many ways, we can’t afford for that not to happen.

***
In other news, be sure to check out some of the medical blogosphere’s best this week: a fantastic Grand Rounds is up at ChronicBabe, and this month’s pain-blog carnival is up at How To Cope With Pain.

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Can Versus Should, Take 2

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(Second in a series of occasional posts on pregnancy, children, and chronic illness.)

It was wonderful to hear from so many of you at different stages of decision-making, pregnancy, and parenthood. The feedback from my recent post on pregnancy and chronic illness unraveled so many interesting angles, from questions of inheritability to adoption to child care, and I’m interested in pursuing all of these in more depth.

The most compelling and complicated question remains, of course, can you versus should you. However, the theme I’d like to explore is the sentiment that “it takes a village” that my friend mentioned in a comment. I’m partly drawn to this because I think it’s emblematic of living with chronic illness in general, and also because I’ve been thinking a lot about health care reform and chronic illness.

After all, anyone who lives with chronic illness already knows the juggling it requires, the multiple roles the people who love us take on for us, and the complications it adds to life decisions.

Pregnancy, infertility, adoption, and parenting are extraordinarily challenging and life-changing no matter your health status; factor in the demands of chronic illness and my immediate thought is yes, it really does take a village. If what makes effective health care is a hot political topic right now, than carving out a niche for the many women living with chronic illness who are pregnant or want to be parents is appropriate.

There are both medical and personal implications of this notion of a village. If there’s anything I’ve learned from twenty-eight years of being a patient, it’s that when different doctors and specialists work together, the patient benefits. I love that my (new!) primary care doc, my lung doc, and my other specialists know each other and confer with each other about my care.

Many chronically ill women have high-risk or medically intensive pregnancies, and just like women in high-risk situations who did not have additional existing chronic illnesses, their needs demand close monitoring and thorough, attentive care from their obstetricians. But for many women with chronic illness, the best situation is one in which all of the doctors who make up their health care team work with each other—whether it’s discussing risks of certain medications on fetal development or the best way to handle a disease exacerbation in late pregnancy, this communication is essential.

But of course this medical village is only the beginning. Issues of infertility and high-risk pregnancies aside, what I’ve heard from many of you, and what corresponds with what I discovered when talking with patients for my book, is that caring for the child once he or she is in your life is an immense challenge. (Notice I didn’t say once you’ve given birth, because no matter how you decide to become a family, you’re still trying to balance the same problems.)

“How can I care for a baby on the days when I can barely take care of myself?”

I’ve heard that question posed many women with many different types of chronic illness. Some are incapacitated by pain, other battle life-threatening exacerbations, but the universal question remains the same. And the answer, of course, is that you can’t do it alone.

So who would make up your village? Would spouses, relatives, and good friends be able to bridge the gap for you? If you needed regular help with child care, could you afford it? If you need to maintain some sort of income after maternity leave, does your job have any flexibility?

More simply, do you have a plan in place so that you can be the parent you want to be without completely sacrificing your own health?

It isn’t easy, and in an ideal world the cost of chronic illness and health insurance and child care and all those variables we have to consider would be more reasonable. In an ideal world, we could count on our bodies to be somewhat more reliable, and we wouldn’t have to choose between the immediacy of the present and the potential long-term outcome so often.

But we’re not there, we’re here. So whether it’s assembling a medical team that works for us or figuring out a back-up plan for those days when our bodies fail us before it happens, building a village that is strong and restorative is the best thing we can do.

And in the end, aren’t so many of us already living proof that yes, it does take a village to thrive?

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Health Care Reform and Existing Chronic Illness

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On the cusp of Obama’s inauguration, it’s hard not to get excited about the potential for health care reform in America. After all, some promising issues were touted during the campaign: affordable health insurance for all Americans, investment in electronic medical records and biomedical research, and increased focus on disease prevention and disease management, to name a few.

As a resident of Massachusetts, whose universal health insurance law has made us the state with the lowest uninsured rate in the country, it’s been especially interesting to see the successes and the inevitable complications of implementing this type of reform.

Obviously I think the most important thing we need to do is make sure people have access to health insurance. There are many, many reasons to support this notion, but I can’t help going to the most personal: As you know if you’re familiar with this blog, I am a patient with multiple chronic diseases—lifelong, progressive diseases that require constant care and maintenance. Even with reasonably good insurance a significant portion of our budget goes to health care expenses, and most of our major life decisions are made around issues of health outcomes and health insurance.

Ask me to try and live without the insurance that makes this possible, and everything else I’ve worked for in my life crumbles. That’s no way to ensure a sound economy, let alone a positive health status or a reasonable quality of life.

It’s not surprising, then, that beyond increasing access to health insurance what matters most to me is how we approach chronic disease in this country. Preventive medicine and wellness initiatives are hugely important, especially in terms of preventing and treating costly diseases like type 2 diabetes, obesity, and related health problems. From a health perspective and a financial perspective, this makes so much sense, and I hope the measures proposed during the campaign come to fruition.

But there’s more to this notion of preventing and managing chronic disease that demands attention. Consider that one in 12 Americans live with autoimmune disease, or that 25 million Americans live with more than 600,000 rare diseases and you begin to understand the scope of existing chronic illness in this country.

What matters to me are policies that make it affordable to maintain existing chronic illnesses and help prevent disease progression. For example, in terms of my ability to work, contribute to society, and minimize cost and use of resources, I am much a much cheaper patient when I can get the medications and routine physical therapy I need to try and prevent serious lung infections than I am when I am an inpatient.

For patients like me, health care that covers our nebulizer medications, certain IV therapies, or chest physiotherapy not only keep us out of costly hospitalizations in the short term, but they lessen the damage to our lungs that can mean massively expensive problems down the road.

Like so much about chronic illness, the universals here are much more significant than the personal details—whether it’s degenerative arthritis, multiple sclerosis, etc, being able to take the appropriate medications and access the treatments we need to stay healthier and remain productive contributors to society is so important.

Above all, it just makes so much sense…which is though I have a healthy dose of skepticism, I am cautiously optimistic about where we’re going in terms of health care reform.

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Food Matters…

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This was the post I planned to write:

“I have to confess, I haven’t read Mark Bittman’s Food Matters yet, but I am intrigued by what I read in this review. A ‘Guide to conscious eating’ seems especially appropriate this time of year, when we tend to focus on eating well and starting new habits.

As a celiac, I am gluten-free by necessity, and as someone with chronic, progressive lung problems, I am dairy-free by choice. As I’ve written before, I no longer see this lifestyle as one of food exclusion but as one with a different set of possibilities. There is no question I feel better without gluten, and if the removal of dairy has made my congestion even a little better, it’s worth it to me.

I don’t plan on altering this combination too much, but I’ve thought a lot about how I want to embrace the spirit of change in the New Year. Over the past few months, I’ve shifted towards less animal protein and more plant sources, until somehow I found myself not having any animal protein until dinner, and sparing amounts at that. When I read how Bittman and a colleague embarked on a ‘vegan until six’ endeavor with limited simple carbohydrates to improve their health (there are lots of environmental reasons behind his choices too but I am focusing on health), I thought, ‘Huh. Who knew it had its own catch phrase?’

It’s really not too much of a shift from what we’re already doing in our household—planning meals in advance, making things from scratch in larger quantities for later use, shopping the perimeter of the grocery store. In essence, I’m continuing to swap out my midday protein for a plant-based one. But the difference is that now I am doing it more consciously. High cholesterol and cardiovascular disease run in my family, and I figure I have enough issues as it is.

I know many of you out there have made lifestyle changes and dietary changes that aren’t necessary for medical conditions (like going gluten-free if you’re celiac, for example) but have made a big difference in your health and in controlling chronic conditions. What has made the biggest difference, and do you have any regrets?”

So that was the post I had set in my mind until I received an e-mail about Share Our Strength’s “Operation No Kid Hungry” campaign to raise funds to help end childhood hunger and encourage Americans to hold food drives within their own communities. According to Share Our Strength:

“This campaign responds to President-elect Obama’s call to
action for corporations to serve our nation’s communities and builds on his commitment to end childhood hunger by 2015.”

I got to know this organization when I wrote a newspaper article on Operation Frontline, a nutrition education program for low-income families. It was then that I really started to see that conscious, healthy eating can be affordable and manageable.

Share Our Strength is running the campaign to coincide with Martin Luther King, Jr. Day, and there are two ways we can all get involved:

1. Text “SHARE” to 20222 on your mobile device to donate $5. AT&T will match all text donations up to $100,000.

2. Holding food drives within their communities beginning Monday, January 19th, which is Martin Luther King Day and a national day of community service.

Visit Share our Strength for more details.

And then I thought about how much food really matters, and how lucky many of us are to have the luxury to decide just how conscious our eating can be.

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Pregnancy, Children, and Chronic Illness: Can Versus Should?

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One of the most complicated chapters to write in
Life Disrupted was the one about pregnancy and parenting when you have chronic illness. There were so many variables to consider, and so many questions that don’t necessarily have answers.

As one of my doctors once asked, just because you can get pregnant, should you?

That’s not something that can be answered in a single blog post, a series of posts, or a chapter in a book, but it’s one I think many patients face in some form or another. I know it’s one we face, and have approached from all sorts of angles the past couple of years.

What makes it such a complex question is that the variables that go into it differ from person to person. From where I stand, there are two major concerns that dominate this discussion: (1) getting pregnant and safely carrying a baby when you have chronic illnesses; and (2) being able to care for said children when chronic conditions flare.

Like the severity and diversity of chronic illnesses itself, these concerns run the spectrum. For example, one young patient in my book suffered from chronic pancreatitis and wondered how she would manage child care during her severe pain episodes were she to have a child. She also worried about passing her condition on to her child. Another patient with cystic fibrosis became pregnant and was prepared to sacrifice her life for her child—and that was a legitimate possibility. She faced serious health challenges before delivering her healthy child, and had to agree to have full-time help caring for her baby afterwards before her physician would sign off on her pregnancy plan.

(For another poignant story of the risks and challenges of pregnancy and childbirth with CF, check out Confessions of a CF Husband.)

These are just some examples. I know pregnancy and type 1 diabetes has its own set of blood sugar concerns, or that multiple sclerosis exacerbations may actually improve during pregnancy but MS medications should be avoided while pregnant, and the list goes on…

And of course, there are chronic conditions that can cause infertility. I’ve written before about how PCD affects both conceiving and carrying a baby, and those concerns are separate from the issue of being able to care for children during prolonged exacerbations or hospitalizations.

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation, the issue remains the same: How do you care for children on the days when you cannot care for yourself? Those of you already balancing these competing needs, I’d love to hear your input. I’ve collected some patient stories on this, but it’s a conversation that continues to evolve, and the more voices the better.

If your chronic illness influences fertility or causes high-risk situations, how do you draw the line when it comes to medical intervention, whether it’s assisted reproduction or deciding when it’s time for a pre-term delivery?

There’s another distinction that fascinates me, and that’s the distinction between wanting to be pregnant versus wanting to be a parent. I don’t think I realized there could be a distinction until recently, and maybe there isn’t for everyone…but when you’re weighing what’s best for the mother and what’s best for a potential baby and what’s best for a family, I think it’s a relevant one.

In terms of the “can versus should” question, I wonder how many women prefer adoption? Is chronic illness an impediment to adopting, or does showing your conditions are under control suffice?

It’s an exploration that’s been on my mind ever since I wrote this Salon.com-inspired post about choice, and I think this angle is a natural extension of any talk about children and chronic illness.

I realize these are deeply individual choices, ones tied up in personal preference, disease progression, risk tolerance, religion, economics, and health insurance, to name but a few of the factors. There are no easy answers, and there are no “right” answers. Not everyone can afford to have help with childcare, not everyone can afford medically intensive pregnancies or to not work during high-risk pregnancies that require bed rest, and not everyone who would like to can afford the cost of adopting or having IVF.

(I know adoption and IVF are expensive regardless of existing health status; I’m merely focusing this discussion on people who are considering these options in conjunction with chronic illness.)

I guess in the end the variables and “can versus should” deliberations boil down to a different consideration altogether: how to be the parent you want to be when with a body that doesn’t cooperate.

So, if you’ve been through this, are actively discussing it, have plans for parenthood down the road, or became sick after you had children, please chime in.

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2008’s Year in Review and Looking Forward

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This time last year I was homebound and pretty sick, and all I could do was think about how glad I was to not be in the hospital. Apparently not much changes, because it is New Year’s Eve and I find myself several days into a battle to avoid being an inpatient—and extremely grateful to be able to type from home.

But to say not much has changed in 2008 would be a big understatement, both personally and publicly. Looking back over this year’s posts and this year’s headlines, I find that perhaps inevitably, there is some overlap.

Of course, 2008 was the year of my first book, and I found myself thinking a lot about writing, language, and the power of narrative medicine. I did lots of things I’ve never done before, like radio interviews and book readings, and some things that were all too familiar (hello, canceling highly anticipated plans due to various plagues…). Now, I’m looking towards the next big project.

In the larger world of health care, health policy and economics, there was the same blend of highs and lows that made their way into my world. Massachusetts made great strides in terms of universal health care (despite some complications), and 2008 was an election year in which health care and the female vote mattered. As exciting as moving in a new direction is, of course it’s also tempered by serious economic woes, job loss, and even everyday expenses are more of a burden.

Whether it’s hope in the future president, hope for a new job or a steady job, hope for health insurance or housing, hope for a family or a diagnosis or simply the hope for more good days than bad, may 2009 be a year where we hold onto the highs and where the lows even out, a year of hope for our futures.

(As a seasonal aside, visit me here for simple tips for a healthy New Year!)

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