To talk or not to talk – that’s the question. Is it easy to talk openly about a life-threatening illness such as cystic fibrosis (CF)* OR is silence golden? I waited for nearly 40 years before I found my voice…
Imagine something in your life that makes you feel emotional? What’s your private cross that you bear? A lossed loved one perhaps or like me, an on-going health issue? Pretend that you had little outlet for this emotion or decided to bottle it all up for more than 30 years. That’s a long time to leave it all pent up. But that’s how it’s been for me and others I know handling our health time bomb.
“The opposite of talking is waiting.” Fran Lebowitz
For most of my life, I tended to suppress all my emotions about CF and be very guarded about disclosing it to strangers or raising it too often with family and friends. I never wanted to be viewed as the ‘ill person’ and be defined by my CF and I certainly never wanted anyone to feel sorry for me or be pitied.
My condition is unfortunately not that well known or understood and it cannot be easily seen or ever properly imagined by most people. This harsh reality most definitely added to my strong desire to keep my condition tucked away as much as possible. It became my inconvenient truth.
In my experience, because I knew that my illness was not going to magically disappear there seemed little point in ‘going on’ about it to others. I never wanted to sound like a broken record by mentioning it or complaining too much or too often to those around me. I also felt that by minimising the time I spoke about ‘mein kampf’, I would reduce its importance in my life which would in-turn make me feel less affected by it. Looking back, these verbal barriers were a form of self-protection.
On the surface I have always looked fairly well and I’m good at covering things up. I’m sure at times that a lot of my friends would be inclined to almost ‘forget’ I had an illness.
People are not mind readers and over the years they would not have been able to predict how I would respond to being probed about the state of my illness. I can only imagine that this must have left them with a conundrum: “Do I mention it to Tim or not? Do I ask him how his health is or do I wait for him to bring it up? Surely, he’ll let me know when he wants to talk about it. I don’t want to upset him. He doesn’t like to talk about it so I’ll do the same.”
As I didn’t raise the subject most people probably felt I didn’t want to talk; which led to a stand-off that was mutually beneficial for both parties. Indeed, it became the illness that dare not speak its name.
At one end of the spectrum, there are some people you encounter in life who really don’t want to feel uncomfortable, even for a short while, by asking about someone’s ill health or difficult times. These ‘human ostriches’ – with their heads in the sand – ignore the situation and hope it goes away.
At the other end, quite a lot of my friends have always made the point of asking me how I’m fairing every time they see me. One of my best friends, Paul Chrispin, has even gone as far as having his own code and language for my CF – referring to my lungs as ‘kippers’ and my intravenous treatment as ‘outro pluto’ (you work it out!).
Similarly, in my sporting life, it was much more preferable to keep my illness under wraps as it always felt a disconnect for a non-healthy situation to be dictating terms to my healthy pursuit of exercise. The only noise would have been that of my cough when my lungs played up while I was playing field hockey or other sports.
But after so many years of secrecy and protection with my inner turmoil, bitterness and frustration stored up, there was a huge amount of unresolved sadness, resentment and emotion under the surface. When I did attempt to open up and talk about my CF, the emotion would seep through the cracks. My voice would waver like that of an adolescent boy who’s voice is breaking and tears would usually be right around the corner.
Think of the famous WW2 ‘Dambusters’ raid and how the Mohne dam would have been able to stay resolute until enough of the bouncing bombs had opened cracks which in turn led to the inevitable break and massive deluge.
“You know your problem… you keep it all in” The Beautiful South
Over the last few years, something has changed in me and I felt the desire to be more open with people about my condition and what it has taken for me to still be here when so many with CF have sadly perished. I now really want friends to ask me how my health is going.
The birth of my son Felix in 2007 and the enormity of being a father acted as a catalyst; opening my emotional floodgates. I sought out my first course of counselling from a local church which had never really been available or on offer to me by the NHS. I didn’t feel like I was losing the plot as such and I didn’t turn up for my counselling with pencils up my nose and a pair of pants on my head (although I don’t want to castigate anyone who might want to wear pants on their head – it’s a niche look!).
I just felt that the time was right to talk and unburden myself of some of my inner demons – unpick a few of my layers if you will – in order to ease the tension of the built-up of emotion under the surface. At this point, someone completely neutral would be the only person who could listen and navigate me through the choppy waters from silence to sound.
I had an epiphany that surviving CF had been the biggest achievement in my life but it was hidden away and I wasn’t talking about it or using it for my own or others’ benefit.
I decided to take the lid off my ‘CF Pandora’s Box’ and reflect on my life – past, present and future – my trials and tribulations, happy times and my survival strategies. I identified what it was that had made the difference in keeping me alive and defying the odds.
As I stirred my conscience, I began a journey of discovery that awakened my soul to the overriding desire to share my hard-fought but enriching life-lessons in order to help myself and others, increase the understanding of CF and inspire people that even at their lowest ebb with the odds stacked against them, that there is usually a way to overcome.
The boomerang effect
There’s a hypothetical law of the universe indicating that what you give out or transmit is reflected back at you.
By opening up and talking through this blog, I have definitely noticed that my new transparency about my CF struggle has been reflected back by many people. Judging by the responses from the CF community, I am already making a difference and in some cases, offering a rare ray of hope that you don’t have to just exist with CF but you can live a relatively full life.
Similar to my own vow of silence, it seems clear that a lot of other CF adults have kept their emotions hidden away for most of their lives. Through reading my testimony, it appears that some CF sufferers and healthy people with their own life issues have felt empowered to hold a mirror up to themselves and consider how they would benefit from letting go and opening up more to their nearest and dearest.
Other blog feedback has revealed that the non-CF community now have a deeper understanding about the illness and are appreciative to be offered such reflection and insight. Some I know have taken it one step further and have helped to raise funds for the cause by marathons, cycle rides and other activities.
Distant friends, all my family and parents of school pals have been in contact after reading my blog or seeing one of the newspaper articles.
I even walked into my local barber shop for a haircut some months ago to be greeted by: “We saw your article in the newspaper – we never knew – good on you for sharing!”
All those years of built-up emotion under the surface has been reduced as a result of my being more open with myself and others. Indeed, I can now talk in public places about my CF and the voice holds itself together a lot better.
I would say that there’s a balance to be found between talking more and shouting from the rooftops – after all, it’s still a very private subject. It’s not easy to speak up and I am still pretty reserved about my illness with strangers but I feel deeply touched that my words have helped others.
I have opened my CF gate and the silence has bolted. I can’t close the gate now and don’t really want to as this new approach feels entirely appropriate. However, it’s taken me nearly 40 years to get to this point and I wonder whether I should have started to be this open before now.
Back to the question: To talk or not to talk. Sometimes in life, it’s OK to hide your life issue away, just be careful not to bury the associated emotion for too long as the cracks will appear. You may be pleasantly surprised when you do open up with the response you receive.
Silence helped me look back in anger, but speaking up has helped me look forward with positivity.
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.
Yours cup half full
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website