I would like to share with you my understanding of the impact of secrets in families. I have chosen to do this because if there is a pattern of secret
keeping in families, discussions of rights, choices and decision making become meaningless.
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 grandmother 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.
Sadly my mother was diagnosed with leukemia some 9 months after my father's formal diagnosis. She died seven months later. I am grateful that they were able to have this precious 16 months to pull together, rather than be pulled apart, by a secret.
My relationship with my father is now very close. I am now proud of the way he is managing his significant disabilities with dignity and I am able to tell him this with openness, honesty and love. It has been rewarding to watch his growing self-esteem when he hears my praise. I am grateful, that I have had the opportunity to meet my dad and see him for who he is. This would not have happened if he had died before the secret was exposed.
Significantly when my father attended the Huntington's Disease clinic in Melbourne for his formal diagnosis the doctor pulled out my grandmother's death certificate from his filing cabinet. The stated cause of death was Huntington's Disease. I can't believe that
my father was previously unaware of this information, as he was the primary care giver.
I have also discovered that my cousins have been aware of this knowledge all of their lives.
Interestingly we were cut off from this side of the family after my grandmother died. In other words, this death certificate confirms that there was a secret about my grandmother having Disease. Whether this secret was being kept by my father, or by the medical profession, is still a secret to me.
"There are secret alliances formed and the unaware are cut off from those who know the secret "
This brings up another issue. What are the ethics of the medical profession keeping medical information a secret? I am pleased that I didn't discover that I was at risk of Huntington's Disease until I was 34, but I do not have children. My brother has a son who was born 12 months before my father was diagnosed.; am sure that my brother and sister-in-law would have made different life choices if they had been aware that there was a risk of Huntington's Disease.
When will my 10 year old nephew be old enough to make choices regarding knowing his genetic status? I would be interested to hear comments about this issue from those in the audience who discovered at a young age that they were at a risk of Huntington's Disease. Currently my nephew cannot legally access predictive testing until he is 18 because it is believed that prior to this age he is not wise enough to be able to make an informed choice. If treatment strategies become available for prevention of disease progression will the policy of waiting until the age of 18 be reversed?
When I initially identified that dad had Huntington's Disease I had blown apart the family secret. What did I do with the associated knowledge that I had a 50% risk of Huntington's Disease? Ironically my only role model for handling such information was my father, so I kept my risk status a secret from all except my immediate family.
I was anxious and depressed during these years but due to the fact that the underlying reason for this was a secret, I had cut myself oft from the supports of friends and health professionals.
I found predictive testing to be extremely stressful because I was desperate to know my risk status. In effect, my risk status was a secret that the medical profession was keeping from me.
It was distressing to know that someone knew something about me that I didn't know. I have also discovered that predictive testing is not black and white -to know, or not to know. Genetic testing is far more complex than this.
Once you have the information you can't give it back. In effect you jump off the path of being ignorant of your genetic destiny and onto the path of awareness. Being forewarned about what it may be like on this new path is an important part of the decision making process. It is therefore the responsibility of the keepers of genetic secrets to ensure that people wishing to discover this knowledge about themselves are made as aware as possible of the consequences of making this choice to know.
To know or not to know - either choice has many pros and many cons. To choose not to know is also a valid life choice.
In summary all in this audience are aware that life often presents difficult choices and decisions. We have a right to be supported with respect and dignity when these decisions are being made. We also have an obligation to support and respect our family members when they are making similar decisions.
Such support and respect can only occur if there is openness and honesty in families. This does not happen if there are secrets. We also demand more understanding and respect from the community. How can we get this if we keep our experiences a secret? We demand our rights to access such tests as preimplantation diagnosis. It is difficult to lobby for these rights if we are ashamed of being heard.
All family members also have a right to privacy so whilst there is ignorance and prejudice in the community it is important for the family as a unit to decide how much to disclose about themselves to others.
I applaud Michael and Tracey for their recent efforts to inform the public about Huntington's Disease. Hopefully their courageous endeavours, and workshops, will break down some of the barriers surrounding the secrecy
By Dr Kaye Miller MBBS(Hons), FRACGP, Dip(RACOG), DA (UK), Master of Social Science in Counseling
Dr Kaye Miller presented her story at the recent AHDA WA Awareness Day. Dr Miller is a carer for her father who is in advanced stages of Huntington's Disease,
and also had a stroke which has left him paralyzed down one side. She has been through the predictive testing program at the Neurosciences Unit and was found to be at low risk.
Reprinted from Australian Huntingtons Disease SocietyHDA (Inc) WA, Volume S Issue BDecember 2000. With thanks