In this page, we’ll look at tips to help when communicating with Negative Nellies, and how to deal with advice that you don’t necessarily want, and things that people say that may hurt or offend.
Often people, even those closest to us do not know what to say in the face of cancer. It can lead to some people saying inappropriate things or giving unsolicited advice, often directly to the person with the brain tumour or to their carer. People will offer advice on what the person you are caring for should be doing and therefore what you should be doing. Others may avoid you.
In the videos below, Judi and Nick talk about the unhelpful things people might say when they find that your loved one is diagnosed with a brain tumour.
What to do when people avoid you
One of the most difficult things is when people avoid you. There are many stories of people crossing the street or going to a different set of shops because they do not know what to say or do when someone has a brain tumour, especially if it is not curable.
It is important to understand (although it can be heartbreaking and frustrating) that it is not you or the person you care for they are avoiding. They are avoiding grief. Grief and loss is not spoken about much in our culture. Many people do not know what to say or how to offer support.
It is up to you how you handle it. There is no right or wrong. You may want to roll your eyes and think, “That’s their problem. I won’t rely on them.” Or you may phone and say something like, “Hey! I think I spotted you downtown. I thought I’d just let you know how we’re going.”
Then, give them a brief run down on how you’re coping and possibly even what you need from them. Then they have no excuse. You may even say, “Look, I know that it can be difficult, but just come and say ‘hi, how are you going?’”
“Have you tried…”: Unsolicited advice from Negative Nellies
Negative Nellies often say inappropriate things to the person who has cancer. Often, carers hear them too. In these cases, it is helpful to remember:
You do not have to keep listening to someone’s opinion if it is not helpful.
If someone in your circle of friends and family are not getting the message that you are not interested in what they are saying, and are working on the advice of medical professionals you consult, you have every right to say something like:
| “I feel sad/bewildered/frustrated/etc. when you tell me [unwanted advice]/say there is a cure for [disease].” |
| “Don’t you think I would try something if I thought it would work?“ |
| “I am doing the best I can and right now I need your love and support.” |
| “I know you may feel helpless to help, but I don’t feel supported or heard when you keep [making specific comments]. Would it be okay if you didn’t keep telling me about [topic] ?” |
Tips from Martha Carlson
One perspective comes from Martha Carlson who contributes to the website CureToday . She tells of how she has dealt with many people telling her how she can cure her cancer over a three year period.
“I understand that usually the person instructing me on mistakes I’ve made or changes I could make is doing so out of love and concern. I don’t want to get in an argument. I don’t want to hurt feelings or sound strident about what I know from paying attention over the past three years.
I sometimes choose to remain silent as someone explains about diets or vitamins or cider or whatever “cure” is currently making the rounds on social media. I get it. Before my diagnosis, whenever confronted by a person with cancer, I’d silently reassure myself that could never be me. I was too young. I mostly ate the right things. I exercised…
The problem with staying silent is that it steals my power and confidence. The family member who walks away thinking they’ve given me a chance to save my life if I only put into practice their advice feels satisfied and empowered. I feel small and, basically, stupid in his eyes and, too often, my own. Of course, staying silent also means the other person leaves without being educated about actual scientific research and the personal experiences of someone living with stage 4 disease.”
Martha’s tips adapted
| Listen first. Whether you’ve been hearing the suggestion for years, as in my case, or this is the first time learning that, for instance, coffee enemas are the cure, the person who’s doing the talking doesn’t need to be immediately shut down. I try to remind myself that she believes what she’s saying, thinks it’s something I’ve never heard before, wants to save my life, and, most importantly, doesn’t know any better. I listen first, at least to a few sentences.. |
| Don’t apologize. I do my best to not say “I’m sorry, but…” That’s because whenever I’ve done so, the other person seems to believe that means I am open to further discussion about treatments that I know hold no merit. If I must be blunt, I simply say that I’m following the advice of medical professionals I trust. |
| Lead with a fact. I’ve got several at my disposal, and which one I use depends on the conversation. I explain about different stages of brain tumour and the different survival rates depending upon the stage. |
| Follow with a fact. The other common view I hear is about the value of alternative treatments, both to avoid cancer and to treat it. Again, I find that using a fact, this one from a recent study at Yale University, is helpful: “78 percent of people having conventional treatment for cancer survived at least five years, compared to only 55 percent of people having alternative treatment alone. |
| Give a little. I will often talk about my own experience with things like meditation, qi gong, exercise and healthy eating to remind the other person that we don’t have to argue in stark opposition. |
| Be kind, not silent. Say something like, “It’s hard to confront illnesses that could end our lives. I try to be both optimistic and realistic with this disease.” If I have to, I explain the facts again and point out positive developments due to scientific advances. |
| Change the subject. I have one relative who, whenever I see him, brings up the teachings of an alternative-medicine specialist. Chances are good that there’s someone similar in your life. I try to preemptively control the conversation by asking for specifics about his kids, his retirement, his house—anything other than his health or my own. |
| Hold up a mirror. As is true in dating, most people would rather talk about themselves. If someone seems bent on discussing illness, I make it about their own health and offer nothing about mine. You’d be surprised how quickly someone can forget he’s talking to someone with incurable cancer. |