The response was overwhelming. Over 500 respondents provided honest and raw feedback, and from this, we were able to delve deeper at what you found useful and not useful when discussing cancer with your loved ones.
Your decisions are respected
Nearly 50% of respondents were open to discussing their diagnosis with anyone who seemed interested. Conversely, only a small percentage (3%) of respondents did not wish to openly discuss their diagnosis to anyone for a variety of reasons.
However, nearly 100% of respondents found that their friends and family respected their decision to discuss or not discuss their diagnosis to some degree. Additionally, a large proportion of the respondents (65%) found that their family and friends were available to talk whenever it suited them.
For some people though, it appeared that although their friends and family were open to discussing and listening, timing and availability was a limiting factor.
The Unintentionally Unhelpful
This term was coined to describe something that had been said with good intentions but missed the mark. An overwhelming 85% of respondents had something unintentionally unhelpful said to them.
Cancer elicits a wide range of emotions, all of them normal, and all of them ok to feel. Usually, a comment misses the mark when it fails to reassure your current feelings. The comment “you’re lucky to have your type of cancer,” can, for some, build confidence after the immediate shock has settled and you’re informed of your treatment options, prognosis and decisions. But people seldom feel “lucky to have cancer” and even if they have low-grade cancer, that is curable, with an easy treatment, there is no reason they need to feel lucky. It still can rock your world and make you feel exposed and vulnerable.
Our respondents found the best reply to these comments were to simply ignore them and continue with the conversation.
At the end of the day, people will continue trying to show their support how they deem appropriate; but it can be quite frustrating. Additionally, it can be even more frustrating trying to explain to a third party why the comments were unhelpful as you may be met with “they were just trying to be nice,” or “but that’s a nice thing to say, you’re taking it the wrong way.”
One phrase that seemed to pop up regularly was people informing them of other people who had the same diagnosis that had died. You may roll your eyes and think “why would anyone think that is something helpful to say?” But in difficult situations, such as discussing cancer, people may lack the experience of how to communicate. Identifying someone who they know who sadly died, is one way to demonstrate that they have something in common, and can relate and empathise to what you may be experiencing. It can be difficult replying to this type of comment, but simply saying “I’m sorry to hear that,” and continuing the conversation should suffice.
When hearing those words do you smile and feel empowered, or do chills run down your back? Interestingly, half of the respondents found these words encouraging and inspiring, while the other half acknowledged that sometimes it is difficult to be strong and positive, and found this phrase irritating.
Why would “stay positive” be viewed as unhelpful?
Cancer is exhausting. The disease itself can manifest in a number of ways that can cause you to be in pain, feel nauseous, or simply fatigued. Its treatments can lead to skin concerns, cognitive decline and restlessness (just to name a few side effects). Sometimes people don’t want to feel strong, they just want to be able to get through the day. Having someone tell you to be positive, or stay strong can be an unnecessary conversation that the person doesn’t want to have.
If someone says to you “be positive,” but you’re really not in the mood to feel positive, it can be easy to react negatively. Taking a deep breath and counting to three can reduce any immediate actions that you may later regret. And remember: it is 100% ok to take a break from being strong, and taking a break does not equate to giving up.
We asked respondents “If there was one piece of advice you could give your loved ones, what would it be?” From there we formulated a word cloud to see what words recurred.
Discussing cancer can be difficult. And even if you find you are given the opportunity to talk about your cancer and are respected, it is evident that people just want to be listened to.
Have you ever just cried, or screamed about something? But immediately felt better afterwards. That purging feeling is called catharsis. Catharsis is a long fancy word used to describe the release of strong emotions, such as those felt when experiencing a cancer diagnosis, going through cancer treatment, and after a cancer diagnosis. Catharsis has been shown to have psychological benefits and can help cope with emotions. It’s also quite easy to do if there’s someone to listen. The most difficult thing about catharsis is trying to find someone who can figuratively be an emotional sponge, who just listens, provides support but most importantly, does not provide advice.
I am me (with cancer)
Finally, our report showed that many of you, are you! In fact, all of you, are still the same person you were before your diagnosis. And although the diagnosis and treatment have affected you in different ways, you still want to be spoken to and treated like you were before being diagnosed. Although it can be difficult discussing cancer with some people, finding that person whom you can vent will allow you to cope better. And if people say something that misses the mark, it does appear that they are just trying to help, but yet lack the skills to do it proficiently.
Live Better With would like to thank all respondents who took part in our survey. Your anecdotes, comments and stories were touching and real. We are currently writing our follow up article.