Coping with Chronic Illness

Being well, being sick, and why communication is key

Lightning never strikes twice, goes the cliché. But if you — or a family member — suffer from a severe chronic illness, you learn all too quickly that even on the sunniest day lurks the potential for medical catastrophe to strike like lightening — unexpectedly and many times over.

How does one live with such uncertainty? This question is central to two new books about the emotional impact of chronic illness not just on those who bear the diagnosis but on their extended families, as well: Invisible Sisters: A Memoir by Jessica Handler (PublicAffairs, $24.95) and Dancing at the River’s Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness by Alida Brill and Michael D. Lockshin (Schaffner Press, $23.95). Taken together, these volumes also underline the crucial role, not just life-saving but life-enhancing, a caring physician can play — and provide models, positive and negative, for what happens when communication thrives, and when it fails.

Jessica Handler’s cogent memoir chronicles her life as the “well” sibling to two younger, tragically unwell sisters. At the age of six, Susie, two years younger than Jessica, is diagnosed with acute lymphocytic leukemia. The time is the 1960s, and with successful treatments for childhood blood cancers still years away, Susie dies when she is eight. Her loss is devastating in its own right and even more so for its foreshadowing of future loss: Sarah, at four the youngest Handler sister, has already displayed symptoms of a different blood disease, eventually diagnosed as Kostmann’s Syndrome, a chronic ailment in which periods of relative calm and “normal” life alternate with sudden debilitating setbacks and emergency hospitalizations

Alas, the Handler family as a whole suffers from another chronic failure: silence. It is a symptom itself of the illmatched coping styles of the distraught parents — depressive/avoidant Jack and practical-minded Mimi — but their withdrawal from each other translates into even more unspoken anguish not just about the wellbeing of the sisters but about their crumbling marriage. And so the household becomes one in which fears are shushed, questions are discouraged, and expressions of comfort and concern come uneasily. Amid this atmosphere, Sarah, who will die at 29, valiantly struggles to grow into a “normal” teenager and adult. And Jessica, suffering from survivor guilt, flees home in search of her own brand of normalcy. She moves to California, where she throws herself into her career as a film production coordinator — and dabbles with cocaine to shut out her emotions. Eventually, she does find peace with her family and herself, but the struggle is long and intense.

Could this family have held together even if illness had not struck? Who knows? But any family struggling to manage the multi-faceted challenges of chronic illness could benefit from Dancing at the River’s Edge, a compelling dual memoir by Alida Brill, who has suffered from a rare autoimmune disease since adolescence, and her long-time physician, Michael D. Lockshin.

Anyone reading Brill’s official biography — she is an esteemed author, researcher, social critic and women’s rights activist — would not guess at her other “identity” as patient. That is one of her chief points: it is more than possible to create a fully realized life as an individual, not a sick body in a hospital bed. But the task becomes that much tougher in the absence of doctors who fail to recognize each patient as a person. Lockshin’s entries — he and Brill alternate chapters throughout — emphasize his view of the dialogue between physician and patient as a negotiation centering on the patient’s needs. Throughout, his message is simple but essential: doctors need to listen to their patients, and care for and attend to them as the human beings they are. In Dancing at the River’s Edge, Brill and Lockshin provide a model for doctorpatient partnership all too rarely seen. Any family coping with chronic illness should read this book — and then give it to their doctor.

Diane Cole is the author of the memoir After Great Pain: A New Life Emerges and a contributing editor of U.S. News & World Report.