When good intentions hurt: Exploring Toxic positivity and conversations about cancer

5 minute read time.
When good intentions hurt: Exploring Toxic positivity and conversations about cancer

While positive affirmations can be uplifting, is it possible to have too much of a good thing? Is ‘always positive’ always helpful? In this blog, we’ll be exploring a concept known as ‘toxic positivity’, and how it affects those facing cancer. We'll also offer guidance on how to engage in conversations about cancer.

What is toxic positivity?

When talking about difficult or upsetting emotions, a natural reaction might be to try and counter those feelings with overly positive responses. Although the intention is to provide comfort, positivity can become toxic when it dismisses valid struggles and negative emotions. Emotions are complex, so we need to embrace the full spectrum of feelings, both positive and negative feelings.

Toxic positivity can be emotionally draining. The pressure to have a positive attitude all the time, can lead to feelings of guilt, shame, and isolation when negative emotions arise. We encourage members to express their emotions authentically and offer support without judgement.

Experiences of toxic positivity

Just over a month ago, a Community member wrote about their experience dealing with toxic positivity. Their partner had recently been diagnosed and they had just started telling loved ones.

After sharing their experience, this member asked the forum if anyone else had experienced toxic positivity and what they had done about it.  This allowed for a healthy discussion to take place, allowing members to share openly about their experiences.

“I am getting that at the moment, people telling me, 'But you look so well!’ Or ‘you will get through it as you are such a positive person’”

“I am still experiencing some toxic positivity almost 5 years on from my original diagnosis.”

“I just wish people would think before they speak and realise you have gone through a life-changing experience.”

“Ahead of me starting chemo, a friend passed on the advice of a friend of hers who has been treated for cancer. The advice was that you don’t have to be positive all the time - the drugs will work anyway. I think I’ll be taking that on board”

Click here if you would like to read the full discussion.

Supporting each other through ups and downs

Authenticity and vulnerability are cherished within our Community. By sharing our true feelings and challenges, we cultivate an environment where members can feel heard and understood. Together, we learn that it’s okay to have difficult days and that seeking support during these times is a sign of strength, not weakness. By talking honestly with others, we can improve our mental health and general well-being.

Have you experienced a form of toxic positivity? If so, you may want to pause reading for now and share some of your story with us in the comments below.

Positive thinking

Toxic positivity can be tough to deal with, for both caregivers and those living with cancer. In addressing this, we are not dismissing having a positive mindset, there is a balance that can be found. The key is being real with how you are feeling each day and considering what kind of support you may need.

In reply to the question about toxic positivity, one of our Community champions made some good points and offered the following advice.

“You will find that the ‘positivity’ language will keep coming along so you just have to have selective hearing. But at other times when you know people well and know that you can be open, do try to educate them in a supportive way…

… As for the positive mindset, there is a place for it. My Respiratory Consultant (I also have asbestosis) is a very good family friend and he maintains that of all the patients he sees those who are glass-half-full people do actually add to their ability to get through their treatment and come out the other end in a better place than those who don’t have that mindset - it’s not scientifically proven, just his observation from many years dealing with cancer patients.” 
Community member, Emotional support forum, Toxic positivity thread

Talking to someone who has cancer

How could you reshape your conversations to offer empathy and understanding to those living with cancer? When talking with someone who is navigating the challenges of cancer, it's important to approach the conversation with empathy. Here are a few things you can keep in mind when talking to someone living with cancer:

  • Do not feel you need to have answers. Listening can be enough. Even if it goes quiet for a time, try not to be afraid of the silence or feel you have to fill it.
  • Try to listen instead of thinking about what you are going to say next. When the person with cancer is talking, pay attention to what they are saying.
  • Try not to say that everything will be fine or encourage them to be positive. It can sound as if you are not listening to their worries. It is better to let people speak honestly about their feelings.
  • It may not be helpful to tell the person about other people’s stories. You may have heard about other people’s experiences with cancer. Cancer is different for everyone. They will get the information they need from their healthcare team.
  • Showing empathy is helpful. If they start to cry as they talk, you could say something like, ‘I can see how upsetting that is for you’. If you are close to them, you could simply sit with them and hold their hand.

For more advice and information, you can follow the links below.

Talking about your cancer diagnosis

It can be tricky talking to people about your cancer diagnosis and cancer treatment. How people react when you tell them about the cancer may depend on different things. Many people have no experience talking to or supporting someone with cancer.

Follow the links below for more information and practical tips:

Who can you talk to?

Think about who you usually talk with about important issues or difficult problems. This is probably the best person to talk to. This may be your partner, your closest friend, your eldest child, another family member, a work colleague, a counsellor or a religious leader. It may be somebody who is going through or has been through a similar experience.

Sometimes it is easier to talk with someone you do not know. You may feel less pressure to act a certain way. You may also feel safe knowing that they will not share the conversation with your friends or family.

If you feel this way, you could:

Anonymous
  •  An interesting topic but I am having difficulty with the term toxic, but I do recognise some of the given examples. My early symptom presentation seems different from the contributors to the Pancreatic forum. It took two months to get referred to RM from October 2022. GI group diagnosed stage 4 pancreatic cancer in January and started Folforinox but with oxaliplatin withdrawn around cycle 9.

    My symptoms back in October were dominated by Barrett’s Oesophagus but not much else. This condition makes swallowing increasingly difficult but in my case was the only initial symptom. Progressively in the run up to Xmas, I experienced some left side back pain but nothing excessive. My condition deteriorated quite rapidly with inability to eat (not now from oesophagus but form the chemo and presumably from progress of the tumour and its impact on the pancreas) fatigue, irregular bowel movements (frequently in the night). Around chemo3 the impact of the oesophagus constriction rapidly receded but taste and appetite had gone, and weight loss continued.

    After chemo8, I was forced to pause two cycles with a diarrhoeal episode which had me attend A&E where I was prescribed with Creon for the first time. Either it coincided with a change, or it drove that change, but rapidly my bowel issues went away and with the restart of chemo and my appetite and taste slowly returned. I am now at week 6 of return of these changes which is fantastic.

    My main problem today is neuropathy and data. I need to use the data issue to return to the topic of toxic positivity. I am a scientist by background albeit now retired and this is the first illness I have had so it is a bit new. I did spend 3 months as a carer for my sister-n-law in the USA some 8 years back when she had breast cancer which familiarised me with chemotherapy and its’ effects. Our family is mixed race and I’m an atheist and my wife Muslim, so we do have philosophically different views and analyses. The broader family is also diverse and geographically widespread, embracing Europe, India, Africa, and South America.

    So within this diverse and extremely close extended family (and friends), they have rallied around, and we maintain an active WhatsApp group and many of the members have flown in, from as far afield as Vancouver, to provide relief and support. My view on positivity is shaped by the diversity of this group but also those outside this circle i.e. other friends and neighbours etc. We all locate questions and comments and their positivity onto a spectrum that we define as the receivers of them.

    As a data driven atheist, my spectrum relates to pure secularism to religious/faith followers. My rejection of toxicity as a descriptor is largely based on the observation that a) all questions and comments are based on love and caring but are flawed by belief frameworks and a degree of ignorance/inexperience. At the secular end, evidence and data are more dominant in framing questions and comments but they share the same love and caring. I find that I don’t challenge the overly positive inputs, I automatically locate them on my spectrum and kind of switch off but will set out my position based on current data trends and concrete physical conditions. Discussion with my end of the spectrum is simpler and frequently shorter.

    My most interesting, recent discussions was with a relative who is a doctor and not because of a core, cancer related medical discussion but because we have both effectively lost almost a year of what we once defined as normal very healthy lives. His was to a serious bicycle accident and mine was as set out above. It focused on what return to normality (or what that might look like) so he was focused on getting back into cycling and for me to return to being one of the oldest water skiers still trying to master the slalom. He sits on the spectrum as both data driven by training but raised with the Islamic Faith, so I don’t know how to locate him on it, and I suspect he is not alone in challenging my analysis but I’m sticking with it.

  • My Husband has Terminal Cancer - only treatment a Target drug for which we are so thankful, I can see the changes in him.   I have just read the article and have now asked him for his reaction...a man of few words.   His answer :    'I am feeling good and keeping fit, playing Bowls competitive, 3/4 times a week. I don't feel down.  Still doing a bit in the garden, cutting the lawns - large area.  I really feel that I am going to beat this and cannot see any reason why not.  I  have got too much to live for'.     It has in the past,  made me go away and cry because there is no 'give'  or understanding on his part.  He says 'I don't know why you worry'.   I make sure that life is the same as before his diagnosis 7 mths ago.  After reading this blogs out to him and talking about them - He just got up and started whistling and singing,  something he doesn't often do  - and I am hurting.     

  • I think the worst is that almost everyone seems to know someone and either it was the worse outcome or the treatment was nothing.  My husband ended up being very blunt with my mother when I was fighting for my life in ICU and she was still referring to people she knew that had made out the treatment was nothing.  Of course I now know all those people do what I do and smile and say I’m fine even when I feel total rubbish.  

  • Hi  
    Thank you for taking the time to share some of what you have gone through since October last year. It sounds like you have had to go through a lot and Im glad you have had such a supportive family rally around you to provide support and relief. 

    You have made some very good and interesting points in your comment which I have enjoyed reading, thank you.

    I understand where your rejection of toxicity as a descriptor comes from. My understanding of the phrase "toxic positivity" is this. The positivity isn't toxic based on the person or the intention of the person making the comment or asking questions. Even if someone has a degree of ignorance or inexperience, what they say may not impact the other person negatively. Positivity can become toxic when the person effected by the comments feels like they cant freely express there emotions. They may feel like they have to supress there true emotions and feelings which can lead to unhealthy coping mechanisms and isolation. Therefore, the positivity presented can cause unhealth, or be unhelpful, or even "toxic".

    Thanks again, vanderoeck, and I wish you all the best with mastering the slalom:)

    Take care,
    Dylan

  • I love this - I'm going to borrow that line!!