19th February 2018

Talking about cancer – is it ok with you?

Talking about cancer (c) KarinSieger.com
Talking about cancer (c) KarinSieger.com

Talking about cancer – Helpful, or not? When is the right time? How do you do it? Do you tell everybody or just a few? How will they respond? So many and many more questions.  What to do?

So many people affected by cancer struggle with how to communicate about what is happening.

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 do some struggle with talking about cancers, 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 cancer happens automatically. It is a release; a 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?

Reasons for not talking about cancer

 They 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?
  • Energy-preserving: I need to keep my focus and do not want to be distracted by the emotions of others.
  • Loneliness and / or mistrust: There might not be anybody we can talk to.

None of this is right or wrong. We are what we are. We do what we think best.

When I was first diagnosed with breast cancer I decided to talk about my cancer.

I told everyone that needed to know, including my neighbours (but not my therapy clients, which I know regret). Most importantly, I told them what I needed from them – business as usual, no pity, no worry, no change.

Therapists are mortals, too

Telling my ageing parents, who live abroad, that was the most difficult decision and (telephone) conversation of all.

Should I tell them after the tests and before the diagnosis, so they have time to prepare, but may worry unnecessarily? Or do I tell only if the diagnosis is positive and then cause them a massive shock? I opted for the former.

Whichever way you turn it, it is hard and heart-breaking.

The impact of cancer and family and friends

Why did I tell others?

  • 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. It will depend on the circumstances and what I feel will be best for me.

When you outgrow a metaphor – cancer journey

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 frightened of what others may do as a result of knowing the truth about our health, all that 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.

The impact of cancer does not end with treatment

Having lost certainty of health and life can lead to an overwhelming sense of helplessness and loss of control.

How we decide to share our news and talk about cancer with others, or not, can be an important moment in taking charge of what is happening.

It is our prerogative to talk about cancer, or not, to share or withhold, to decide when the time is right, and who needs to know what.

Keeping our identity despite terminal illness

The key is that the choice we make is based on

  1. our explicit decision of what is best for us and not others, and
  2. that whatever we choose to do, is not motivated by fear of what might happen, if we tell.

Not always easy, I know, especially when others depend on us.

Being told the truth by us, that can be tough at the outset but in the long-run less damaging for all concerned (including children, who otherwise may feel left excluded and abandoned).

Standing up for ourselves, talking about cancer 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?

One minute you are ok, then next helpless and frail

No one else can give us this permission. It is ours to take and to insist on.

(Based on an article first published on Huffington Post.)

You might also be interested in my interview about coping with the emotional impact of cancer. Listen Here

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