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Seven ways that talking about your brain tumour diagnosis can help!

Dr Katherine Carpenter shares seven reasons why starting those important conversations, and opening up about your feelings and experiences early on, really can make a significant difference to your wellbeing.

Dr Katherine Carpenter, Consultant Clinical Neuropsychologist and Chair of The British Psychological Society's Division of Neuropsychology, shares seven reasons why starting those important conversations, and opening up about your feelings and experiences early on, really can make a significant difference to your wellbeing and the wellbeing of others.

Receiving a brain tumour diagnosis is a huge shock, so it's no surprise that everyone will handle it differently.

For some, talking through fears and worries can feel a natural and helpful step. But for many, these conversations can be incredibly difficult. You might not feel comfortable opening up or want to worry those around you.

You might not have even acknowledged how you're truly feeling to yourself. But if you are able to find someone that you feel comfortable talking to, it could be very beneficial to your wellbeing…and to theirs.

Here, Dr Carpenter explains why…

Talking strengthens relationships

A lot of people in our community have told us that talking honestly to family or friends following a brain tumour diagnosis, helped them to cope and feel better understood by their loved ones. But it isn’t always easy.

Dr Carpenter explains: “Sometimes because people with a brain tumour feel so alone, it perversely makes them push loved ones even further away, just at a time when they need their support most. They may also be worrying about the other person’s reactions or capacity to cope. Obviously, there is no ‘one size fits all’ and people vary in their willingness and capacity to open up, but generally it is helpful to be able to share how you really feel. This enables you to feel heard and listened to and helps your loved ones to really understand what it is that you want and need from them. In fact, the very act of trying to explain your feelings can help you process what you’re going through. This is not only helpful for you, but helps strengthen your relationships with others by giving them a deeper appreciation of what you’re really thinking and feeling.”

Talking motivates us

Being diagnosed with a brain tumour is extremely daunting. You may also suffer from fatigue, and suddenly doing the things you used to in everyday life can seem overwhelming.

Talking to supportive friends and family can really help if you're feeling overwhelmed because it keeps you connected and reminds you that you don't have to do everything on your own.

Friends and family can help you plan enjoyable activities, make sure you're eating and sleeping OK and help keep you doing some of your normal day-to-day tasks. They can encourage you to bother with the little things that give you pleasure such as having a candlelit bath, putting on make-up or going for a walk.

When we're feeling low, having someone else keeping an eye on our emotional and physical wellbeing can make a huge difference. In fact, talking about one's diagnosis has been shown to help people take care of themselves better, feel more empowered and stick with their treatment régimes.

Talking helps us to address our true fears

When we're facing an extremely difficult situation, it can be tough to process all the different thoughts and emotions we're experiencing and know how to best move forward.

When we're feeling worried, it can be useful to work out what is at the real root of it. And sometimes, people are in such a blur of anxiety that it takes someone else to help them process exactly what it is that they are worrying about.

For example, it might be that you're feeling anxious because deep down you're feeling worried about how a treatment will affect you, about experiencing pain, or of being too unwell and missing something incredibly important to you such as your daughter's upcoming wedding.

Talking about one's diagnosis, whether that be to a friend, relative or professional, may help you to identify specifically what it is that is really bothering you, so that you are then able to take appropriate action. You could, for example, find out more about the likely treatment you'll need, talk to your team about pain relief or have an honest conversation with your daughter about bringing her wedding forward.

Talking helps manage anxiety and depression

A brain tumour diagnosis can lead to feelings of anger, sadness and fear. People may experience feelings of being out of control, and of hopelessness or helplessness.

All of these reactions are perfectly normal and entirely understandable but may be hard to manage on one's own.

Talking to one's treating team – the clinical nurse specialist, for example – can help to reduce feelings of anxiety. Conversations like these help one understand what has happened or may be likely to happen and this can be of great comfort.

Of course, sometimes people not only experience the natural feelings I've mentioned in response to their diagnosis, but may tip over into clinical depression or anxiety. This is essentially when such feelings are much stronger and go on much longer.

If you're suffering from depression, talking about how you're feeling is known to be beneficial and can also enable others to guide you to the proper treatment or therapy if that's likely to be helpful.

Talking improves sleep

Alongside fatigue, feelings of anxiety and depression can upset your sleeping pattern. But talking through your worries and tackling underlying feelings may help.

If the reason you're struggling to sleep is because your mind is racing, it might be that you are blocking out your worries in the day and so they are surfacing at night.

If this is the case, it might be useful to schedule a set worry period in your day where you allow yourself time to talk to someone about your how you're feeling. Knowing you'll have the opportunity to address your worries in the day, might help you to park them better at night.

It might be that talking helps your worries pass for a while but then they come back. But if going over your fears helps you, don't be afraid to keep talking about them. Sometimes talking over the same worries again and again can help us come to terms with them quicker.

Talking reduces feelings of isolation

If you're struggling to open up to a loved one, you might find it easier talking to someone going through a similar experience.

In my experience, people can often feel very isolated and alone following a brain tumour diagnosis, but some of our darkest and most frightening thoughts can seem less overwhelming when spoken out loud.

You know the saying, 'A trouble shared is a trouble halved'? Well, that is certainly true here – sharing experiences and talking to others in the same situation can help a great deal. Not only does it normalise your own experiences but it also models coping by showing you how others are managing, which can be invaluable.

Sharing our experiences helps others

Brain tumours are relatively rare and, as such, frightening and not well understood. In fact, I've come across some relatives who thought that brain cancer was infectious. Talking about your own experience with a brain tumour can definitely help educate and enlighten others about the condition and about what life is really like living with a brain tumour.

Sharing your experience, and how you have coped, can also greatly help those in similar situations because it instills hope, which is enormously important in the management of and recovery from physical illness.

Helping others can also bring us comfort too. I've certainly come across many people who have themselves benefitted hugely whilst trying to support someone else.

I think the skill is not to assume that everyone's experience is going to be the same as yours, to be open and honest but also responsive and respectful of where the other person is at. Simply letting others know that they are not alone in what they're going through, can provide great comfort.

About the author

Katherine Carpenter is a Consultant Clinical Neuropsychologist and currently Chair of The British Psychological Societys Division of Neuropsychology. She was previously in clinical practice for over 30 years and led the clinical neuropsychology service at Oxford Radcliffe Hospitals NHS Foundation Trust for 20 years, with specialist clinics in neuro-oncology, epilepsy surgery and deep brain stimulation. Her brother-in-law was diagnosed with a brain tumour in 2016.

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