In Brain News

Here, brainstrust co-founder and head of policy and services Helen Bulbeck discusses why it’s OK to not be OK, and the dangers of toxic positivity when living with a brain tumour.

At brainstrust we want you to be better than OK. Our support will take you to a space where you feel more resilient, less alone, better resourced, more involved with your care and part of a community, because you deserve to feel better than OK – you deserve to thrive.

But it’s important to know that there will be times when you don’t feel better than OK. And this is OK too. In fact, if you understand why it is important to acknowledge that there will be times when you feel less than OK then these moments will pass more quickly and you will be better able to deal with them. So in the bigger picture, embracing your bad days is all part of the process of being better than OK.

Living with a brain tumour during a global pandemic

During this COVID-19 pandemic, we all have more than enough reasons to not feel OK. And this is on top of the fact that our worlds have already collapsed at some point with hearing the words ‘You have a brain tumour.’ Not being OK is a space we’re used to living in. Sometimes it feels better to have this acknowledged, rather than hearing what people think we want to hear – so the pep talks, the affirmations, the ‘sending sunshine your way’, the ‘everything will be alright’. Maybe, just this once, it won’t be OK.

We need to hear too that it is OK not to be OK. Acknowledging this gives us space to breathe, and allows us to feel our emotions, instead of suggesting we bury them, where they can fester and undermine us.

Toxic positivity

There is a phrase for these ‘positive vibes only’ – it’s called toxic positivity.  It has been described as:

‘The assumption, either by one’s self or others, that despite a person’s emotional pain or difficult situation, they should only have a positive mindset.’[1]  Dr Jaime Zuckerman, clinical psychologist and cognitive behaviour therapist.

Whilst there’s nothing inherently wrong with positivity (it can be a force for good that helps motivate you) it can also become harmful when it’s insincere, forced, or devalues real feelings of anxiety, fear, sadness, or hardship. It invalidates our genuine feelings and encourages avoidance, which can do more harm. It suggests that we are somehow wrong to be feeling the way we do and that we should move on. This in turn can make is feel guilty, ashamed or embarrassed that we shared how we felt.

So not only it is OK to not be OK – we need to acknowledge this. In fact – it is essential. We can’t just choose only the emotions we want to have – that would deny what it means to be human. It simply doesn’t work that way. Feeling all of our feelings, painful or not, keeps up grounded in the present moment. It is a normal human emotion to be anxious during a pandemic and/or a serious illness. ‘Anxiety is a very normal response to a very abnormal situation. We are currently experiencing a shared trauma. No one is alone in this,’ Zuckerman says[2]. So, she adds, “It is important to remove the expectation and goal of feeling positive.” Instead, accept whatever genuine feelings come up, sit with them, and then let them pass on their own. Acknowledge how you feel, and feel all your emotions, good or bad. Avoiding how you feel will only prolong the discomfort and can cause physical distress such as rapid heartbeat, poor sleep, depression. You might want to read more about acceptance commitment theory here.

How we talk to others

Think too about how you respond to others in distress. How often have we told someone “you’ll get through this, it will be OK, it could be worse, you don’t want to think like that”.  This suggests that the person is incapable of handling their emotions. Instead use phrases that acknowledge what the person is feeling, phrases that show you are listening:

  • It’s OK to not feel OK– these feelings are valid.
  • You wouldn’t be human if you didn’t feel this way.
  • Take your time. I am with you.

You don’t need to be part of toxic positivity either as a giver or a receiver. Feel your emotions, sit with them. It’s OK to be not OK.



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