Lessons from the Year of Living Sick-ishly

This is a repost from Prepared Patient Forum blog by Jessie C. Gruman, PhD who is the president and founder of the non-profit organization Center for Advancing Health. It was originally posted on the Prepared Patient Forum blog on January 11th.

By Jessie Gruman. “Buck up. You are going to feel bad for a year.”

This was my chemotherapy nurse a year ago, returning a call I made to my oncologist. I had left a message asking whether there was something he could do to help me. Should I feel this horrible following three action-packed months that included stomach cancer surgery and aggressive chemotherapy?

The answer, at least as far as my nurse was concerned, was “Yes.”

And she was right. It did take a year to regain my energy and feel well again.

The new year set me reflecting about what I’ve learned about being sick over the past 12 months that only the experience itself could teach me:

You know that old Supremes song, “You Can’t Hurry Love”? I learned that you can’t necessarily hurry healing either, even if you work hard at it. A week after that call to my oncologist – still feeling rocky – I joined a local gym’s “$30 for 30 days” New Year’s special to try to revive my cardiovascular fitness. For each of the next 30 days, I trudged down there, got on that Nordic Track machine and forced myself to flail about for 40 laborious minutes. On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed. But I was committed, convinced that if I did them, I would get better faster.

And it still took a year before I felt normal again. How frustrating was that?

I have absorbed the very American notion that success results from hard work. By extension, health should be achievable if we comply with the admonitions of our employers, the media and health promotion advocates to exercise and eat right. I knew that my behavior didn’t cause my cancer and wasn’t going to cure it. But surely, I thought, I can speed up my recovery from the assault of chemotherapy and surgery if I really try. I had great expectations. So did those around me: “Why is she still so frail?” “Why isn’t she better yet?”

I might still be feeling pokey if I hadn’t worked so hard at recovering. But this experience slammed me up against the reality of physical illness and the limits of behavior in changing its course. It reminded me how a deep belief in our own efficacy makes it easy to slip into blaming ourselves (or the sick person) for not getting better. And it reminded me of how unruly, unpredictable and often uncontrollable the effects of disease and its treatment are on our bodies.

Another lesson: I expected that Health Information Technology (HIT) advances and opportunities to connect with other patients using social media would dramatically change my experience of treatment in contrast to my previous three experiences with cancer.

I was dazzled by the ease with which I was able to collect the information and evidence I needed to make good decisions about my treatment plan. And I am grateful for online access to friends and colleagues all over the world that allowed me to feel less isolated over this past year than I have during previous illnesses.

But once I started treatment, feeling ill extinguished my curiosity about my disease. It dampened all interest in second-guessing treatment decisions or seeking innovative approaches or learning about new technologies to aid my recovery. And only occasionally could I summon the energy to reach out even to close friends and family, much less to seek out people like me online for advice and support.

I see embedded in the enthusiasm about patient portals, decision aids and smart phones an attitude that being actively engaged with new technologies can somehow provide happy relief from the pain and discomfort of illness. Bright health information Websites, fun games designed to inspire adherence and smart medication reminder apps are presented as having the potential to turn the experience of illness into a series of problems that are easily solved through the acquisition of the technologies.

It’s true that HIT can help with scheduling appointments, refilling prescriptions and coordinating the disposition of test results to different clinicians, for example. (My clinicians mostly don’t use electronic health records with patient portals, so I had no respite from those tasks). And remote patient monitoring and assistive devices already make some caregiving chores easier. These are welcome contributions, especially as more responsibilities for care are shifted to patients and their families. But I return to the world of the healthy with the impression that the value of HIT is tactical, not transformative, at least for the sick person: the suffering remains.

My third insight from the past year is that most of the time I believed I was thinking clearly but in hindsight, I see that my judgment and thought processes were often clouded. Through my experience with serious illnesses, I’ve developed strategies for getting through the days. For example, regardless of how I feel, I always bathe, dress, eat breakfast and put my shoes on. The shoes were important: they serve as an optimistic signal to myself that I’m well enough to get up and go outside just like anyone else. Between the shoes and my exercise/diet routine, I could sometimes convince myself that I had returned to my former healthy state (conveniently forgetting my need to lie on the couch for hours).

But I had not recovered, and the clarity of my thinking was often – although not consistently – compromised. I scheduled events and travel that were unrealistic, given my stamina, and when I couldn’t be dissuaded from following through, I’d spend days recuperating. Again and again I disappointed myself (and others) by setting ambitious goals for commitments I couldn’t meet.

I know I am not unique in this. I watch friends and colleagues whose judgment is impaired by illness make similar, often higher-stakes errors. They make weird self-care choices, abruptly change treatment decisions, fire their physicians and refuse to seek advice about clearly serious conditions. We all believe that we are making rational choices when we do these things. But we aren’t, and the impact on our health and recovery can be serious.

I wanted to write about these three insights while they are still vivid for me. Standing for the past couple months on the shifting border between illness and health, I’ve experienced how (fortunately) easy it is to forget how illness eats away at the balance of one’s mind, body and spirit. As a mostly ill person glancing into the world of the healthy over the past year, I’ve marveled at the insensitivity and indifference to this imbalance by even those with the greatest love, or best intentions, training and experience.

The tools, technologies and services that constitute health care will never completely eliminate the suffering caused by illness, even if they are perfectly delivered. But that suffering might take a more modest toll if all of us – patients, professionals, caregivers, family, friends and colleagues – have clearer expectations about the arc of illness and how it affects and can be affected by each of us.

In the end, that curt directive by my chemotherapy nurse to “Buck up. You are going to feel bad for a year,” was the most helpful advice I received.