Life After Diagnosis: How Illness Changed My Identity

In 1986, when I graduated from high school, I was voted “most likely to climb Mount Everest.” I thought I would do it, if not actually, then at least symbolically.

I pictured my life unfolding as a linear ascension to some theoretical summit, with the journey fueled by my vision and will power. Reflecting on this adolescent narrative of identity thirty years later, I see that reality is actually much messier. It turns out, there is no summit and no obvious endpoint—and the journey is certainly not linear.

Life is full of plot twists.

The Diagnosis That Challenges My Identity

At age 32, in the midst of training to become a doctor, I was diagnosed with Multiple Sclerosis. This led to a protracted and jarring identity meltdown. As I wrote in my book, “The Healing Power of Storytelling,” so much of what I believed about myself was suddenly called into question.

Here’s who I thought I was, in broad strokes:

• I was an athlete. Always good at sports, I was strong, coordinated and unafraid of physical challenges. It was a given that my body always worked for me.
• I was going places. Full speed ahead. I excelled in school—Stanford University, Harvard Medical School and now a medical residency in internal medicine at one of the Harvard hospitals. I had a good brain.
• As long as I tried hard, I could get what I wanted.
• This was my self-story, with my infallibility the organizing theme throughout the narrative.

Then, my body stopped cooperating. My legs felt weird and disconnected. Both feet were numb and tingly, and over the course of a few weeks this sensation climbed relentlessly upwards toward my belly button. I ignored these symptoms for as long as I could, but eventually ended up in a neurologist’s office. An MRI showed an abnormal spot on my spinal cord—a demyelinating lesion consistent with possible Multiple Sclerosis.

My doctor, a prominent neurologist in the Harvard system with his name on almost every research paper in the field, was convinced of the diagnosis. Firmly and definitively he told me: I had a lifelong, incurable, degenerative neurologic disorder and should start taking medication immediately. (As a medical student, I knew enough to know that these medicines were incompletely understood and potentially toxic.)

He lacked bedside manner, to say the least, and I hated him in that moment for his certainty and for his arrogance. You’re wrong, I thought, and I bolted. Even though I was training to be a doctor myself, I didn’t see another neurologist for five years.

Facing My New Identity

Sociologist Michael Bury has described illness as a “biographical disruption,” one that ultimately dismantles and, by necessity, reconfigures our sense of self. Since my diagnosis—yes, the neurologist was ultimately right—I have become fascinated, as both a patient and a practicing physician, by how identity shifts in the face of illness. This shift is profound.

Being told I have a degenerative condition that might well leave me disabled forced me to question and eventually revise my story.

I lived in denial for a while, refusing to admit—even to myself—that I have a disease. Then, I moved on to shame, telling no one about my diagnosis except my family and closest friends, embarrassed by my brokenness.

I was angry with my body for failing me, and I kept this “sick” part of me cordoned off, afraid that if I admitted out loud that I have Multiple Sclerosis it would swallow me up. People would treat me differently, as less than whole. People would pity me. People would forget the rest of me. Maybe I would forget the rest of me.

Integrating an illness into your identity is a process, and one that takes time, self-love and patience. Most fundamentally, it is a process of meaning-making. Doctors often forget this and throw diagnoses at people like newspapers at the front door, expecting us to take them immediately inside. It doesn’t work this way.

When I was first diagnosed, I was lonely and I found myself craving stories. I wanted to hear from others who had been given a diagnosis like mine and had carried on. Questions I wondered about:

• What had their lives been like?
• Had they been able to move forward in positive and productive ways despite their disease?
• Had they been able to incorporate illness into their lives without having it define them?
• Was it possible to find strength through illness, despite the obvious hardships?

I wanted hope—not necessarily of cure, but of taking charge of my own life.

A Library of Possibilities

In 2010, motivated by this yearning, I decided to start collecting stories of illness and healing, for other patients with other diagnoses. Maybe, I thought, I could use my own experience to give others what I had wanted most: a sense of possibility. My goal was to create a library of stories so that patients like me, struggling with a new diagnosis, could see a way forward.

I found that not only are the collected stories useful for other patients, but the process of sharing one’s story is itself immensely therapeutic. Stories, it turns out, benefit both the teller and the listener.

In the words of medical sociologist Arthur Frank:

“People tell stories not just to work out their own changing identities, but also to guide others who will follow them. They seek not to provide a map that can guide others—each must create his own—but rather to witness the experience of reconstructing one’s own map.”

Ultimately, this led to my creation of Health Story Collaborative, a nonprofit organization committed to empowering patients and their loved ones to find meaning, through storytelling, when confronted with illness.

Connecting Through Story

My personal experience, as both a patient and a doctor, has convinced me of the value of storytelling. Stories make us human. Stories connect us. Stories help us make meaning in our lives. Working with Dr. Jonathan Adler, a narrative psychologist and now Health Story Collaborative’s Chief Scientific Officer, has helped me ground this experiential and intuitive understanding in science.

Research in the field of narrative psychology has shown that while the historical facts of our lives certainly matter, the meaning we make out of our experiences, captured in the stories we tell about them, is more important, and is strongly connected to mental health.

An article published in The Atlantic in August of 2015 summarizes this nicely:

“In the realm of narrative psychology, a person’s life story is not a Wikipedia biography of the facts and events of a life, but rather the way a person integrates those facts and events internally—picks them apart and weaves them back together to make meaning. This narrative becomes a form of identity, in which the things someone chooses to include in the story, and the way she tells it, can both reflect and shape who she is.”

Who we become—or rather, who we are constantly becoming—depends on a continuous interplay between our biology, our social context, the things that happen to us along they way, and, perhaps most importantly, how we make sense of what happens. We are constantly constructing and reconstructing the stories of our lives.

Ultimately, we are drivers in this process.

As Adler put it in The Atlantic article, “You’re both the narrator and the main character of your story. That can sometimes be a revelation—‘Oh, I’m not just living out this story, I am actually in charge of this story.’”

Why Storytelling Matters

Moreover, how we tell these stories matters. According to the research, the more our stories contain certain narrative themes—agency, redemption, communion and coherence, to be specific—the better our mental health.

One prospective study by Adler demonstrated that increases in agency clearly preceded improvements in mental health, suggesting a causative role. In his words, storytelling is “a subjective endeavor with objective ramifications.”

So, while life is indeed full of events we do not expect and cannot control, we play an active role in determining how the story unfolds. Realizing this has been a gift, but also a responsibility, both to myself and to others.

As a doctor, I learned to appreciate the impact of my words and actions. Through firsthand experience, I know delivering a diagnosis changes lives, changes our identities.

As doctors, we are with patients and their families at vulnerable moments, and who we are in these moments has repercussions. We are a part of the story, and potentially major characters. While it is our job to share our knowledge and to offer our opinions, we need to do so respectfully and without our egos getting in the way. Our job is to guide and to support, not to direct; to help patients determine what is “right” for them, not to be “right” ourselves. Our job is to be with patients in times of need, and ideally, to help them to find meaning and tell their stories in psychologically productive ways.

As a patient, I learned that I have more power than I originally thought.

While obviously none of us chooses illness, we can choose how we handle the challenge. While we can’t entirely control how our illness progresses, we can control how we make sense of the situation, our identity, and this matters. I say this not to minimize, but to empower.

Of course some days it will be impossible to feel a sense of agency, to feel connected to others or to find the redemptive threads in our story, and these inevitable lows are to be expected. In fact, they are an important part of our identity that adds depth and integrity. Meaning-making happens when we step back and reflect, not necessarily while we are in the midst of a challenging day. It isn’t always easy, but in the end perhaps it is all we have.

Read Dr. Brewster’s blog post on learning to let people in and ask for help after a diagnosis.

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