We all know about secrets. Secrets surrounding gift giving, Father Christmas and surprise parties
are fun and exciting and enhance family bonds and relationships. I even used to have a joke about secrets.
Question "What is the definition of a secret?" Answer "Something that you tell one person at a time?"
The secrets that I want to talk about today are not fun or exciting or a joke. They are toxic secrets.
Toxic to relationships and toxic to emotional well being, and they greatly impact on our rights, choices and decision making
capacity. In this context a more appropriate definition of a secret is "relevant information that is kept from the people
who need it or alternatively "information that is either withheld from or unequally shared amongst family members".
Secrecy is distinct from privacy on the basis of the relevance of the information for those who are
unaware.
With privacy the information has little or no relevance to the unaware, so the withholding of private
information has little or no impact on the unaware.
I will use a personal example to illustrate my point. I grew up with a secret. I
only discovered the existence and the content of the secret at the age of 34. The secret was that my paternal grand-mother
had Huntington's Disease. My grandmother had lived with us when I was little. She walked with difficulty, had uncontrollable
movements and did not make any sense to me when she talked. She eventually went into a nursing home and died when I was 5.
I had always been told my grandmother had had senile chorea.
When in medical school I read that senile chorea may not exist and may be late onset
Huntington's Disease. I was understandably concerned about this information.
I quizzed my father about the possibility that senile chorea didn't exist. He was adamant
that I was wrong. He also produced a letter from a prominent specialist confirming senile chorea and disputing Huntington's
Disease. As a medical student I believed the specialist, as a daughter I trusted my father.He also didn't have
any obvious symptoms at the age of 53, so I left the topic alone.
My father had been a market gardener but sold his garden in 1956 at the age of 32. This was the year
before I was born. Fortunately my father managed his finances well and with wise investments and the occasional odd job he
didn't need to work again.
In my childhood it was great to have a dad around ail of the time. In my adolescence I
judged my father as being lazy and irritable, in my 20s and early 30s he seemed to be eccentric,
irrational, stubborn, untidy, unkempt, unreasonable and depressed- I was embarrassed and tried to get him to conform to the
behaviour standards that he had taught me.
The more I tried to control his behaviour the more exaggerated the behaviour became. Our relationship
became distant and strained. I was confused and frustrated about what was happening.
In 1991 when he visited my husband and I when we were living in England I realized that he had obvious
signs of Huntington's Disease. Could I talk to him about it. No. Could I keep this information to
myself? No. Who did I tell?
First my husband and then my mother. We were united by a secret. He was on the outside and we were
on the inside. I have since discovered that he had been aware of involuntary movements for years and had been wondering if
he had the same disease that his mother had had. He hadn't shared these concerns with anyone. In effect he had been keeping
a secret from us.
"I grew up with a secret. I only discovered the existence and the content of the secret at the age
of 34."
Even to this day I do not know how much of his cranky behaviour was related to the strain of keeping
his fears away from us and from himself, how much was his personality and how much was the disease itself.
I told my mother because she needed an explanation for his behaviour. Neither she nor
I knew how to tell my father, mainly because by this stage we were so emotionally distant. Also we were each dealing with
our own issues. My mother was aware of the ramifications of my father having the same disease as my grand-mother. She
was confronting the possibility of caring for my father whilst dealing with the anxiety of both of her children having a 50% risk of having Huntington's Disease and her only
grandchild having a 25% risk. I was confronting a 50% risk. Neither of us could support the other and none of us could
be there for dad. He was in some way to blame.
This demonstrates how secret keeping operates. There are secret alliances formed and the unaware are
cut off from those who know the secret.
Because there is a secret, it is often difficult to know who knows, so that family members don't know
who they can talk to and who they cant. Everyone who knows the secret tip toes around the off limit topic for fear of blowing
the secret apart.
Eventually conversations become so limited that there is no intimacy at all. The most important issues
are never discussed and everyone deals with their own personal fears alone, or outside the most important natural support
network of the family.
Often tensions are so great that some family members deal with the strain on their relationships by
cutting themselves oft from some or all family members.
Such is the nature of toxic secrets. It is not the content of the secret that is toxic. It is that
there is a secret.
We tend to keep secret things we are ashamed of, or things that we tear we cannot face. Avoidance
of facing cur fears makes our fears worse. Additionally if we keep a secret we need to create a network
of lies to keep the secret alive.
The strain on relationships created by such dynamics is enormous. Usually when the secret is
eventually disclosed the feared catastrophic consequences never occur.
My brother and sister in-law, and my husband and I could access exclusion testing. My niece, who was born in 1993, does
not have the risk of Huntington's Disease hovering above her. My mother and father could renegotiate their relationship
to make the appropriate adjustments to accommodate for Huntington's Disease.
