The Burden of Secrecy, by Bonnie Bigalke

May 11, 2015

Guest Blogger: Bonnie Bigalke, MSW, LCSW

Early Stage Care Consultant

Alzheimer’s Association MA/NH Chapter

Secrecy is a seven letter word that implies negativity, underhandedness, trouble. Secrets knot up our stomachs and cloud our judgement. Secrets are sedentary boulders that overtime get buried with layers of moss. Secrets are constantly at risk of being found out; or so we are told. On the flip side, secrets protect people from being hurt. Secrets allow us time to think out alternate scenarios to those we are currently facing. Secrets minimize drama. Secrets protect our most vulnerable, wounded parts.

It is these loaded and almost biblical definitions of secrecy that people facing a diagnosis of Alzheimer’s disease and their loved ones carry with them. Once an individual gets past judging themselves for the diagnosis, they quickly switch gears and begin to wonder how others will perceive them. Many jump straight to that place. Will I be thought of as less than, will my insurance premium go up, will my spouse divorce me, will I be placed in a nursing home, will people take me seriously, will I be forgotten, who should I tell, should I tell anyone?

While the stereotypes surrounding what it means to live with Alzheimer’s disease have largely changed for the better, negative associations still occupy much of the vast space that is Alzheimer’s disease. This makes it difficult for people to know what to tell others about their diagnosis and who to tell. Some people see it as a death sentence while other see it as a diagnosis that has made them more aware of and thankful for each minute, each hour, each day. I have met people living with Alzheimer’s who are terrified that their friends and colleagues will catch wind of their diagnosis. I have known others who would stand on a stage in Times Square and tell anyone who would listen that they are living with the disease and are not taking it laying down. Same goes for family members and care partners. Some are very open about the diagnosis their loved one is living with while others choose to live with Alzheimer’s disease in secrecy. The question is, which camp is right? Those who disclose the diagnosis rather than keep it hidden?

Objectively speaking, those individuals who come to a place of sharing, who can allow themselves not to be defined by the diagnosis, who reach a place of acceptance however small, tend to garner more support, both practical and emotional. Getting there takes some people longer than others. We know that some people never get there. The way I see it, who am I to judge anyone who is presented with a diagnosis of Alzheimer’s disease? Who am I to make that decision for a family? As practitioners, we are taught to meet our clients where they are at. We know that every person is an individual, every family has it’s own unique history. Every person views the world from a lens that has nuances, however slight. What I can do is share the benefits of disclosure with families and offer them support with the goal that in time, they will see those benefits in action and in time, become more comfortable with a diagnosis that knows no gender, ethnicity, socioeconomic status, or sexual orientation. For those who never get to that place, we all have our secrets that we carry with us.