What To Say & What Not To Say

Navigating the minefield

No-one ever sets out to deliberately hurt or offend a friend. Ever! But the words "I have cancer" can turn a usually reliable brain to mush. But we can help you navigate this minefield. 


In times of crisis, the knee-jerk words and sayings that come from our mouths are not the usual carefully considered words we would normally use. Instead they come from a place of fear. When your friend tells you they have cancer, our own fears  and insecurities about disease and mortality rise to the surface. It is at this time when our words are most likely to offend or seem heartless.


When you have firmly put your foot in your mouth and beyond, coming back from that can seem a daunting task. Don't despair, we are here to help. With your words, your friend will feel heard, nurtured and loved, and you will feel present, aligned, and useful.

Helpful & hopeful things to say

Just listen - sometimes silence speaks volumes

You have probably heard the saying, "Silence is golden". This often applies when a friend is talking to you about their cancer life. They have a need to feel heard and nothing demonstrates that like a friend sitting in silence because they are fully present in that moment you are speaking.


Many times we see people who are not listening. They are jiggling around on the edge of their seat just waiting for you to take a breath so they can interject. The whole time you have been speaking, they have just been thinking about what they are going to say next. They weren't really listening at all.


People want to help and fix problems for others, it's natural. But a lot of the time, someone with cancer just needs to talk and doesn't require a fix or advice. So don't offer it unless asked. 


Be an active listener for your friend and your relationship will be all the stronger for it. Active listening is an art which requires practice. Practice it often.

I'm thinking of you

This certainly isn't a cop out when you cannot find the words. It is heartfelt and honest and often let your friend know that they haven't been forgotten because they haven't been around and visible.

I don't know what to say

It is far better to say "I don't know what to say", than not saying anything at all. Fear of saying the wrong thing is normal in this situation. Own it, say it and move forward rather than disappearing from your friend's life when they need you the most.

I'm sorry this has happened to you

This is a very genuine thing to say and like "I'm thinking of you" does not require an answer. It lets your friend know that you are genuinely sorry and you will be around for them.

Less helpful things to say

"So and so had cancer and..."

Fill in the blanks with anything — it doesn’t matter what. Understand that what happened to someone else is irrelevant. Not only are there many, many different types of cancer, but no two patients are the same. 

"So and so had chemo & they didn't lose their hair or become sick & kept working"

While you may be trying to sound positive, the implication to a cancer patient will be that they aren’t doing it right or aren’t trying hard enough. Again, no two people are the same, and there are a large number of different types of “chemotherapy cocktails.” Most people don’t know that and assume that chemotherapy is chemotherapy. It isn’t! Some types are stronger than others based on what the patient needs, and they all affect people in different ways. Bottom line: Don’t make comparisons or assumptions. 

"So and so had cancer, but she died"

Thanks a lot; I feel much better now. 

“Oh, you’ve finished treatment? So, you’ll be back to work then.”

When chemotherapy is over, the body doesn’t just “bounce back” as if nothing happened to it. Chemotherapy is very hard on the body. Afterward, medication has to be taken, and it takes a toll on the body, too. I felt terrible three or four days a week after my chemo treatments were over – for a long period of time. I already had feelings of inadequacy due to the fatigue I had experienced, and comments about what I “should” be able to do at this stage only exacerbated my low self-esteem. At times, I tried to push myself harder and do more than I was capable of doing. The end result was that I just felt physically and emotionally drained.

“You’re not ready to come back to work? So and so didn’t have that. Are you sure?”

Yes, someone has actually said that. I don’t think I have to explain what’s insulting about this, although people say it without thinking about how it sounds. Again, understand that no two people are the same. Whatever “so and so” was able to do is not necessarily what your friend, family member, or co-worker is able to do, and I can assure you that they aren’t pretending to be sick. They’re sure. 

“Of course, you know that...”

Followed by all sorts of information meant to inform and fix the person who is ill. It’s natural to want to help, but don’t supply information or advice unless you’re specifically asked for it. Many people in this situation will hear what the patient’s doctors have said and respond with, “Yes, but...” In my experience, people who are going through a difficult diagnosis don’t want to hear anything at all in terms of advice or information from anyone other than their doctors. Please heed my advice on this one! 

"So and so did this. You should do that too"

Again, the implication is that the cancer patient isn't doing the right thing. Don't make comparisons, assumptions or generally offer advice about someone else's treatment - unless you have been asked for it.

Platitudes

We’ve all found ourselves spouting platitudes at one time or another in our lives. They are an easy way to cope in some bad (or even good) situations. Platitudes are commonplace expressions we’ve been taught by society, perhaps by our families or at school, that lack authenticity because they’ve been overused. When faced with an uncomfortable moment and at a loss for words, a platitude may simply spring to mind because you want so much to have something meaningful to say. 

     

When we use them, it gives the impression that we’re far away from the situation. We want to say something but don’t know what, so we use something that is safe or socially acceptable. But it doesn’t actually relate to the patient on a personal level. 

"You could be hit by a bus tomorrow"

This expression is used to emphasise the present, like the aphorism, “live each day as if it were your last.” First of all, of course, it’s good to focus on the present. The time we have on this earth is a gift, and no one knows what his or her future holds. But fear of the unknown for a person facing a chronic illness is very different from someone who is, for example, nervous about taking exams. There is the danger of never recovering and the trauma of physical suffering, not to mention the obvious fear of death. Most people don’t wake up every day thinking that a bus will crash into them, but patients experience the fullness of their illness every day when they are taking medication, feeling pain and discomfort, having appointments with doctors, and feeling insecurity about their situation. Furthermore, patients with a chronic illness already have a lot to think about. Why remind them that there is yet another way in which they might die? 

"Everything happens for a reason"

This expression completely lacks any evidence that it might be true. If so, I really wonder what the reason is for a serious natural disaster in a poor country, such as an earthquake or tsunami. And what if the reason is a bad reason like war? Many things happen by accident in the sense that they are the unlikely results of the meeting of independent factors. In the case of a chronic illness, we can understand that there may be a situation which can ultimately result in making you a “better person,” as many say, but that doesn’t mean that you weren’t a good person before. It also doesn’t mean that you couldn’t become a better person through experiencing something less distressing. Having a chronic illness is difficult enough without the added philosophical burden of trying to attribute meaning to your disease. No one wants to go through a serious disease for any reason, even if that reason is supposedly positive or “meant to be.” 

"God doesn't give you more than you can handle"

This is an irrelevant statement to someone who may wake up some days wondering if life is worth living at all. There may be some days that, due to the physical and psychological pain, patients already feel that they have been given more than they can handle. And those days can be many. Rather than being told that they, in fact, can handle it, despite feeling that they can’t, they need to be offered loving support. 

"At least you have a good type of cancer"

Yes, people actually say this. This statement is similar to saying “things could be worse.” It’s just a bit more specific. It’s not really anything to feel glad or relieved about. Besides, is there really a “good” type of cancer or any other serious disease? A chronic illness is a traumatic event in anyone’s life. The patient is dealing with a disease – in all its physical and psychological aspects – and not just a “type” of disease. 

"You'll be fine"

This expression is an attempt to articulate hope and decrease worry for both the patient and the person saying it. However, it comes across as a bit hollow and as a denial of the real situation: “We hope everything will be OK, but we’re not going to be realistic and deal with the truth.” It’s similar to saying “Everything will turn out OK,” which is meaningless because everything has never turned out “OK.” Both good and bad things happen in life. The truth is that no one knows whether a person with a chronic illness will be fine or not. An ill person doesn’t want to be patronised. They know full well what they are going through and need to be taken seriously, not treated like an idiot who is unaware of their situation. They also know that a disease like cancer can change drastically from one moment to the next. It’s part of the disease. Instead, they prefer reassurance about your feelings for them. 

"You probably got cancer because..."

This kind of blame game is very harmful for patients. Those who have been diagnosed with a chronic illness have already passed through that blame stage by themselves and have probably thought about whether their illness might be their own fault. First of all, no one really knows for sure why an individual becomes ill. There are statistics about high risk groups and other factors, but there is almost never 100% certainty about causes. Most importantly, statements blaming the patient never helped anyone. They don’t help the patient, they don’t help their loved ones, and they don’t help the treatment. There is simply no reason to make them. Patients have so many other things to think about and so many things to do. They are already coping with a multitude of strange new and unpleasant elements in their life – practical, physical, and psychological. One more unhelpful piece of information can only harm them and add to the difficulties they face. 

Avoid Clichés

Like platitudes, clichés are ineffective and can often have the opposite effect they’re intended to have. Don’t try to make yourself feel comfortable just by saying something. Maybe you can’t find the right words to say. It’s understandable. Instead, listen to the patient’s thoughts and feelings, and try 

to respond genuinely to them. 

 

Below is a list of statements to stop yourself from saying. They may seem helpful, but they’re the types of clichés and epithets that people who are ill hear all too often

"Science is on your side"

Everyone who has ever received medical treatment while sick has been treated with science. Therefore, science was on everyone’s side. There are no panaceas or miracles, scientific or otherwise. Instead of trying to fill the patient with false hope, let the doctors provide him/ her with medical information. Better to fulfil your role as loved one without offering assurances about science. It’s more important that you are on the patient’s side. Besides, going through something as torturous and traumatic as chemotherapy, for instance, does not make anyone feel as if science is on their side just because they made it through alive. 

"Think positive thoughts"

Most people with cancer just do this automatically without thinking about it. However, there will be days when they wallow in their own self-pity, and that is perfectly okay. Let them do this! I know that I needed to do it at times in order to get through. If you do come across someone on a low day, save the pep talks and platitudes for another time, and just be there with them. 

"You need to write down your feelings"

Throughout my life, I have been an avid writer, constantly jotting down my thoughts and musings. A lot of the time, I wrote poetry to express my feelings. When I was diagnosed with cancer, during my treatment and for many, many months after, I could not put pen to paper. The words were just not there. Why? I couldn’t understand it. I came to the conclusion that I was emotionally numb, and this numbness had stifled my ability to tap into my feelings. People would ask me, “What are you feeling?” My honest answer was “Nothing.” I knew there were underlying emotions within me but nothing that needed to be dealt with at the time. It was not possible for me to deal with something that wasn’t there. I would become distressed when people pushed me about it. I knew that one day the numbness would fade, and it would be then that I would be able to start writing again. Alyx, cancer survivor

"I feel helpless"

People with a chronic illness can feel bouts of helplessness, sometimes for long or not-so-long periods of time. Telling a patient that you feel helpless has nothing to do with the patient, who is the one dealing with the full physical and psychological force of the illness. It’s like you’re trying to match what the patient is feeling and project your fears onto his or her situation. Remember that the patient has no time and no mood to deal with your fears about their illness. The same statement can also mean that you feel powerless because you can’t fix their problem. Again, this is drawing the focus away from the patient’s condition and onto your own feelings. In fact, you are not helpless. It’s not your role to fix them, but you can indeed help. The patient needs your support rather than reminders of how fearful, helpless, powerless, etc. you might feel due to the situation. 

"You need to talk. Don't bottle it up"

The patient will talk if he or she wants. Coaxing someone to speak when they might not feel like it can add to the stress and pressure they are already experiencing. It’s one thing to let them know that you’re there for them should they wish to talk and another to tell them what they need. It may be your own need to hear them talk and avoid uncomfortable silences that’s at the root of the statement. Don’t try to take on a 

therapeutic role. Leave that to the professionals, and focus on being available to your loved one in any way they want. I now know that it isn’t uncommon for people facing a great trauma to not be able to feel anything. It may seem like they are “bottling it up,” but in reality, there is nothing to bottle up. It’s just part of the process of going through an illness or other difficult circumstance. 

"I know how you feel"

This sounds fake to patients who have a chronic illness. You can’t know how it is to be ill if you haven’t faced all the unusual stresses of being ill. You don’t have to wake up every day feeling pain and having to meet doctors and endure chemotherapy. You can’t know if you haven’t had to change the parameters and priorities of your life. Even people who have been through an illness can’t be sure of what another person feels. It’s better to say that you don’t know how the patient feels, but that you are available if they would like to speak, to listen to their words and hear experiences, thoughts, and feelings. Empathy doesn’t necessarily mean experiencing how the other person feels 

because you have lived through the same experiences. Instead, it means accepting their feelings and understanding them as best you can from your perspective. It isn’t unusual for cancer survivors to describe a clarity of thought or mental awakening after going through such a traumatic illness. Even if they believed, pre-illness, that they understood the disease and what patients undergo, they discovered upon their own experiences of the disease that they really had no previous understanding whatsoever. 

"How much time do the doctors give you?"

No-one wants to talk about how much time they have left. What this essentially means is “when are you going to die?” A question like that can, understandably, bring up intense fear and stress. But life isn’t about time; it’s about what you do with it. Of course, knowing that you don’t have as much time as you would like can fill you with sadness and stress, further preventing you from taking advantage of what time you have left. Don’t show the patient that you are more concerned with numbers than how he/she is feeling. And it certainly doesn’t make good small talk. If the time left is one day or 100 years, what’s important is quality, not quantity. Will you love this person more and treat him/her better if you know he/she only has a week left to live? If so, how do you think knowing this would make the patient feel? Yes, they may need you more now, but the love is the same. Besides, what are you going to do with this information? We’ve been conditioned to think in terms of time since the industrial revolution, and we’ve become more and more time-obsessed. Life is not a Hollywood movie where a sick patient can simply jump out of bed, fly to Paris, and climb the Eiffel Tower because they have one week to live. Let the patient choose whether he or she wants to think or talk about this. 

"Don't worry"

Why not? Because I have a chronic illness? If I shouldn’t worry now, when should I worry? This is similar to saying “you’ll be fine” or “everything will turn out OK.” In other words, it’s a bit empty. You might find yourself saying this to a patient because you don’t want to worry yourself. After all, if they aren’t worried, you don’t have to worry either. Also, if the statement “don’t worry” isn’t followed by something concretely comforting or encouraging, it’s essentially meaningless. Telling someone not to worry about their cat because you will take care of it while they are in the hospital or undergoing chemotherapy has specific concrete meaning. Telling them not to worry because you’d simply rather they didn’t is meaningless

"Did you read/see the story about cancer on the news last night?"

This attempt at instilling hope in the patient is understandable, but a bit naïve. Television news, magazines, newspapers, and the Internet are full of scientific and pseudoscientific reports about advances in cancer research. “A miracle drug was discovered in the Amazon” might sound hopeful and exciting to you, but it’s best to leave the medicine to the doctors entrusted with the care of the patient and not the 9 o’clock news. Besides, perhaps the patient doesn’t want to speak about cancer 24/7. Don’t forget that the patient was a person before becoming ill and has many interests besides the disease. 

"But we all forget things"

When someone having treatment tells you they are forgetful or have “chemo brain,” don’t say, “But we all forget things.” Trust me; it’s different from what “everyone else” experiences. I found “chemo brain” to be quite unnerving, and most of the time, extremely upsetting. It was as if chunks of my day went missing, and there was absolutely no recall. I estimate that over the course of my treatment, this added up to many hours. Yes, we all do forget things, but this was like an unrelenting assault – so much so that I started to think there were gremlins in the house making cups of tea and leaving them for me to find, sometimes in the oddest places. The frustration I felt is indescribable. I would snap when somebody said, “We all forget things.” I also expected “chemo brain” to disappear once I had finished the intravenous treatments. It didn’t. It persisted for some time. So, just stay aware of this, and don’t try to make light of something that is truly serious and horrendously disconcerting.