Openness vs. Secrecy: What happens when we share our illness story? By Meredith O’Brien

Meredith O'Brien teaches journalism at Northeastern University. The Boston- area author of the newly-released Mr. Clark's Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room—about a jazz band's year of grief and recovery after the sudden death of a classmate—O'Brien is nearing completion of an MFA in creative nonfiction from Bay Path University. Her essay, "Getting with Dr. Uhthoff” appears in the Spring 2017 Intima.

Meredith O'Brien teaches journalism at Northeastern University. The Boston- area author of the newly-released Mr. Clark's Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room—about a jazz band's year of grief and recovery after the sudden death of a classmate—O'Brien is nearing completion of an MFA in creative nonfiction from Bay Path University. Her essay, "Getting with Dr. Uhthoff” appears in the Spring 2017 Intima.

Her advisor urged her not to tell prospective employers at a hospital that she was a survivor of childhood cancer, even though she was applying for a position to work with families and children facing life-threatening diagnoses. It is “unprofessional” for a health care worker to “share with others” personal tales of illness, Kathryn Cantrell (“Disclosure Day,” Intima Spring 2015) was told, as she was on the precipice of a career helping patients to disclose their illness to others.

Openness vs secrecy. These subjects are familiar to anyone who has ever struggled with a serious health condition. Cantrell, who eventually shared with her colleagues her story of being diagnosed with embryonal sarcoma of the liver at age seven, “received warmth, validation, and appreciation” following her disclosure. That’s a best-case scenario, the kind of response everyone hopes to receive. I cling to that hope, that promise of warmth, validation, and appreciation. Fiercely.

With the publication of my essay about the impact of heat sensitivity on the life of multiple sclerosis patients (“Getting Steamy with Dr. Uhthoff,” Intima Spring 2017), I publicly outed myself as an MS patient. It’s the first time since my 2014 diagnosis of relapsing-remitting multiple sclerosis that I’ve written about it in a public setting. Multiple sclerosis groups typically advise patients to think long and hard about disclosing their illness to others—particularly to employers—because there’s a general lack of understanding about the disease, as well as stigma attached to admitting one has an incurable, unpredictable disease of the brain and spinal cord.

In spite of the advice, I crossed my fingers and submitted the piece to Intima anyway, hoping that, if it was published, it would educate and illuminate. The response I’ve received has been positive. Friends have told me they now have a better understanding of how being in the heat and humidity can make multiple sclerosis patients like me feel seriously ill. Armed with their newfound knowledge, they have been going out of their way to make sure the temperature is okay for me, that I am comfortable. They have been very solicitous and considerate, now that they get it.

And more people will “get it,” when it comes to the impact of myriad illnesses, only if more patients flip on the light switch and allow our experiences to be seen. In Cantrell’s case, her tale was met by warmth. In my case, I’m hoping the warmth remains of the emotional variety; otherwise, I’ll be a hot mess lying on the floor.


 

Meredith O'Brien teaches journalism at Northeastern University. The Boston- area author of the newly-released Mr. Clark's Big Band: A Year of Laughter, Tears and Jazz in a Middle School Band Room—about a jazz band's year of grief and recovery after the sudden death of a classmate—O'Brien is nearing completion of an MFA in creative nonfiction from Bay Path University. A former newspaper reporter, investigative journalist and weekly columnist, O'Brien is currently working on a memoir about life as a Multiple Sclerosis patient. Read more about her work at mereditheobrien.com and follow her on Twitter, @MeredithOBrien. Her essay, "Getting with Dr. Uhthoff” appears in the Spring 2017 Intima.

© 2017 Intima: A Journal of Narrative Medicine