To be told someone has cancer, or not?
Is saying nothing wise or cowardly? Is telling others selfish? Is there a right time? Do you tell everyone or a selected few? How will they respond to the news? And can you cope with their response?
Why are we struggling with this so much, and what is best for you?
Steve Hewlett, the Guardian columnist and presenter of the BBC Radio 4 Media Show programme, has been talking and writing about his cancer diagnosis and treatment. Many others do not. Why?
If you or someone close to you has cancer, then the dilemma of telling or not will be a familiar one. The same goes for other life-changing or life-shortening illnesses and traumatic events.
Why are some of us struggling and others don’t give the decision a second thought?
A cancer diagnosis changes everything, can leave people stunt, and unable to comprehend what has just happened and what is about to happen.
For some talking about it happens automatically. It is a release, search for help and safe ground, when all else has turned into nothingness.
Others are too shocked to speak about it, and need time for the new reality to settle in. It is not uncommon for people to decide to keep the diagnosis to themselves or only tell a selected few. Why?
The reasons for not talking about it can be many-fold, including fear of being
~ Judged: Will people label me and reduce me to my illness?
~ Pitied: Will people feel uncomfortable and sorry for me?
~ Rejected: Will people turn the other way, and friends or family leave me?
~ A Burden: Will others be able to cope with the news (eg children, aging parents)?
~ Being Burdened: Will I end up having to give emotional support to those who cannot cope with my news?
~ Disadvantaged: Will an employer or colleagues think I can no longer cope with my job?
~ The centre of attention: I don’t want others to make a fuss about me.
~ Weak:Will people think I am weak and cannot cope?
None of this is right or wrong. We are what we are. We do what we think best.
When I was first diagnosed with cancer I told everyone, that needed to know, including my neighbours (but not my clients, which I know regret). Most importantly, I told them what I needed from them - business as usual, no pity, no worry, no change.
Why did I do that? In all my uncertainty, this was one area where I could exercise control, express a view and make an immediate difference to my life. I did not want to second-guess who knew and who did not. I also did not want to explain, again and again. I wanted to be left to get on with things.
Would I do it again, if I was to be rediagnosed? I don't know. There is no right or wrong. It all depends...
Keeping a secret of the magnitude of a highly distressing (and potentially terminal) illness and treatment experience comes at a cost.
Some of us are expert stoics, and you would never have a clue of what is really going on inside. On the downside, stoics’ emotional self-reliance often leaves them isolated and lacking essential assistance from others.
Lying, pretending, thinking we need to protect others, and being (rightly or wrongly) frightened of what others may do as a result of knowing the truth about our health, takes a lot of energy. This in turn increases the already substantial stress and anxiety we will find ourselves in.
What to do? Undergoing cancer treatment and living with or beyond cancer is not easy. It can take single-minded determination to deal with treatment and its side effects, as well as life-long uncertainty and a roller coaster of unexpected mixed emotions.
Having lost certainty of health and life can lead to an overwhelming sense of helplessness and having lost control.
How we decide to share our news with others, or not, can be an important moment in taking charge of what is happening.
It is our prerogative to share or withhold, to decide when the time is right, and who needs to know what.
The key is that the choice we make is based on our explicit decision of what is best for us and not others, and that whatever we choose to do, is not motivated by fear of what might happen, if we tell.
Standing up for ourselves and telling others what we do or don’t need from them is one important way of asserting ourselves and making choices that are ours to take.
This may well go against the grain, feel uncomfortable, and be different to the way we made choices before in our lives. But surely, if being diagnosed and treated for cancer is not at least the one time when it is ok and necessary to put ourselves first, then when will it be?
No one else can give us this permission. It is ours to take and to insist on.
Karin Sieger is a London-based BACP registered and accredited psychotherapist and writer. She specialises in supporting people with life changing illnesses, anxiety and loss. Karin regularly writes about these topics and others on her blog Between Self And Doubt and for a range of publications. You can also follow her on Twitter.