Is telling you I am seriously ill selfish?

Should or shouldn’t you tell others when you have been diagnosed with a serious illness like cancer, dementia, Parkinson’s? Is saying nothing wise or cowardly? 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?

Broadcaster and former Loose Women presenter Carol McGiffin has finally revealed that she was diagnosed with breast cancer in 2014 and has undergone treatment. She says she decided against going public and found it hard to tell her former colleague Lynda Bellingham, who was being treated for and dying of colon cancer at the time. McGiffin explains that she did not want people to feel sorry for her and that she did not want to burden others (like Lynda Bellingham).

If you or someone close to you has been given a life-changing diagnosis, then the dilemma of telling or not will be a familiar one. Why are some of us struggling and others don’t give the decision a second thought?

Being diagnosed with a life-changing/life-shortening illness changes everything, can leave people stunned and unable to comprehend what has just happened and what is about to happen to them. For some, talking about it happens automatically. It is a release and 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 can be many:

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 (e.g. children, aging parents)?

• Burdened: Will I end up having to give emotional support to those who cannot cope with my news?

• Disadvantaged: E.g. at work, will an employer or colleagues think I can no longer cope with my job?

• The centre of attention: I don't want people to make a fuss.

• Weak: Many people are highly skilled at being stoic, minimizing what they are going through, and telling the outside world that everything is under control.

• Truthful: If I tell others then I am accepting the truth.

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

However, 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, living with a life-changing illness, knowing that your condition is terminal is no mean feat. 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 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. They 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 our plight 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 they way we made choices before in our lives. But surely, if being diagnosed and treated for a life-changing or life-shortening illness 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.

Carol McGiffin made a choice to keep silent, until now. Lynda Bellingham made another choice. The next person will make another choice yet again. And so it goes. As long as the yardstick by which we make our choices is what is in our own best interest, we can make peace with it.