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To tell or not


To tell or not

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									To Tell or Not to Tell…
By Susan Biggar
It happened on the main street of Wellington, New Zealand. Even though it was 8 years ago I can vividly recall
the raw embarrassment. A bit like one of those all-too-real dreams where you’ve somehow forgotten to put your
pants on before going to work. However, rather than under-dressing, this was an accidental case of over-revealing.
It was a beautiful autumn day and Aidan, my 3-month-old son, and I were on a walk through town. We bumped
into a couple that we knew, though not very well. They had known I was pregnant, but they didn’t know that
Aidan was born seven weeks prematurely. Or that he had been diagnosed with Cystic Fibrosis.
First came the normal new-baby chit-chat. “He’s so sweet.” “How was the birth?” “Are you getting any sleep?”
And finally it came, the question that opened the door, the one I was half-wishing for and half-dreading: “So,
he’s healthy now?” Long pause. Do I tell them?
Although worn-out from talking about CF, I didn’t want to hide such a major element of our new life as parents.
Deep breath and out it came. Two sentences into my explanation I knew that my decision to “tell” was the wrong
choice. My friends turned a rather ghastly grey as their eyes glazed over and they attempted (to my paranoid
mind) to beam themselves to a sandy beach in Fiji, far from my story. I quickly wound up the conversation, gave
a small wave and made an ignoble escape down the pavement.
This experience left me confused, as I tried to understand my friends’ response. Maybe they were afraid of one
day bearing a child with an undetected genetic condition. Who isn’t? Possibly they simply couldn’t cope with the
weight of our misfortune. Whatever it was, I knew that I needed to develop a better barometer for judging with
whom, when and where I would share our story.
Initially this meant that my previously open nature gave way to hesitancy and self-protection. I found myself
avoiding the issue of CF with others, discreetly slipping enzymes to Aidan, assuming that no understanding was
better than a misunderstanding. I needed to protect myself. And I also began to question my own motives for
telling people. I dreaded the pity that often followed my self-disclosure. At the same time, I wanted to have my
pain acknowledged, just to have someone say “That must be really hard”. I found that I was as confused about
my own needs as I was uncertain of my friends’ responses.
My tight-lipped approach, which provided a sense of protection, also led to isolation. Surrounded by other
parents at playgroups, in the neighbourhood and at church, yet coping alone. I had learned that telling everyone
could expose me to unnecessary pain and vulnerability
and probably wasn’t the right approach. However, in
time I discovered that telling no-one wasn’t the solution
When I kept quiet it left my “close” friends wondering
if we really were close, while I missed countless
opportunities for the support I was craving. Finding the
balance was the challenge.
Last year I took up rowing, in one of those long, tippy
boats. Well, for me, learning to judge when to “tell” has
been a bit like learning to keep my boat from tipping
over. To keep upright you have to develop a good sense
of balance and know your own body well. Sometimes
you lean too far in one direction and then over-correct
the other way and in you go. I find it the same with
talking about CF. You have one negative experience and
vow never to mention the words in public again; that is,
you over-correct. But eventually as you begin to know
yourself better (and know what responses you can cope

Right: Susan with Aidan (back), Oliver (front, left ) and
Ellis (front, right)
with) you venture out again, realising that this battle we’re in is too big to be fought alone. I think that’s sort of
what has happened with me.
After clamming up for a long time, I finally began to let that protective shell crack open. And as I started learning
to share about our family’s challenge a steady stream of personal struggles began to dribble out of the parents
around me. Not cystic fibrosis, but developmental delays, a still birth, marital struggles and many other very real
fears and worries. Our family has changed cities several times since my Wellington experience, forcing me to
constantly make new friends – and make decisions about discussing CF. But as the stories have come out over
the years, I have been healed and encouraged - and seen others experience the same - as we have unloaded some
of the burdens of being human.
Despite years of practice, I still manage to make pretty sizeable mistakes in my judgements about “telling”.
Recently CF came up in a casual conversation with a mother I’ve known for over a year at our sons’ school. I
actually thought she would have already been aware of the presence of CF in our lives. But she wasn’t.
When I mentioned it she stared at me for a moment, looked slightly nervous and then said something like “Oh,
I didn’t know that. Well, I’ve got to go now. Bye.” Not what you would call a roaring success. However, unlike
my first encounter in Wellington, I didn’t feel that I had unzipped my insides, revealing all to an unwelcoming
The difference was not in her response, but in my capacity to accept her reaction, whatever it was. I can’t change
the fact that my kids have CF. And I can’t control how others respond to that information. But I think I’m
learning that while it’s okay to protect myself a bit from others’ insensitivity, when I try to go it alone I’m the big
Susan Biggar lives in Melbourne with her husband, Darryl, and three sons.

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