Health Story Collaborative founder, Dr. Annie Brewster, is a Harvard trained physician working at an academic medical center in Boston, Massachusetts. She is also a patient. Here is her story:
I have an illness. It took me years to be able to say that out loud, or to even write these words.
I was diagnosed with Multiple Sclerosis in 2001. I had a vague tingling in both my legs, which I ignored for a while, until I couldn’t. When the tingling had ascended to my mid-abdomen, I reluctantly called my doctor. After blood tests, a lumbar puncture (AKA spinal tap), an MRI, and a consultation with an “expert”, I was told, not so gracefully, that I have MS. I didn’t accept this at first. I was angry, and scared. I was a medical resident, and a single mom of a 2 year old at the time. I couldn’t be sick! Furthermore, I have always considered myself a robust person. I am an athlete. My body is strong and coordinated. I am someone who is always “okay”.
I carried on. I got remarried. I had two more children. I finished residency and became a medical attending. Then I had a second bout of symptoms, and new changes on my MRI, and I finally admitted to myself that I have a disease. In 2006, I started taking medicine. Still, I kept my diagnosis a secret from all but my family and closest friends. I felt ashamed somehow. More importantly, I didn’t want to be defined by my illness. I didn’t want people to feel sorry for me or treat me differently. I kept quiet and I carried on, but this silence took a toll. Shame is poison. I was rejecting a part of myself.
Coming to terms with illness and learning how to integrate it into my life has been a process.
Living this reality, I have come to realize that illness doesn’t necessarily make us “less”. Quite the opposite. It can give us perspective, depth, compassion, empathy, wisdom, resiliency and strength. It makes me a better person, and a better doctor. As individuals, we can decide how we deal with health challenges. It is an intricate dance with many ups and downs, but ultimately our attitude is what is essential. We can only control the physical aspects of health to a certain degree, but we are always in charge of our mindset. Of course there are horrible days and complaining is human, but if we step back, there are always gifts to be found, and hope can be continually redefined regardless of how/if our disease progresses.
Early in my journey, I realized that I yearned to hear from others facing illness. I wanted to hear stories of people who had found ways to move forward in positive ways in spite of health challenges. Even more, I wanted to hear from people who had been able to recognize the positive aspects of illness, the perspective shifts and personal growth that are possible when one is forced to recognize the fallibility of the body, and ultimately, mortality. I craved connection, but I didn’t feel ready, or personally suited, to go to a support group. It was then that I decided to record patient stories, and to make these stories available to others dealing with similar circumstances. This is what I would have wanted.
My work as a doctor has further inspired me. Over the years, I have learned that one of the most healing things I can do for my patients is to listen well. Patients want to tell their stories, and to feel heard. Unfortunately, the harried climate of primary care today rarely allows for such quality exchanges, and people are left wanting.
The goal of Health Story Collaborative is to harness the healing power of stories.
In 2010, I started recording stories and I have been slowly building the library ever since. In 2012, I came across the research of Jonathan Adler, a psychology professor at Olin College in Needham, Massachusetts. Jon's work focuses on the psychological function of our stories and their relationship with health. He has a special interest in the ways in which adults make meaning of the difficult things that happen to them and how that meaning fuels both identity development and mental health. Working with him has grounded my personal experience, my intuition, and my passion in solid scientific research.
I am committed to continuing this work. I am not interested in dramatic sound bites. Instead, I want to honor the arc of each story in its integrity, and celebrate the strength and resiliency of each individual. My hope is that these stories will be helpful to both participants and listeners. None of us are immune to illness. Healing narratives are relevant to all of us. These stories transcend illness as a celebration of hope, human resiliency and dignity.
Other writing by Annie Brewster: