How to talk to friends about a brain tumour diagnosis
We asked members of our Teenagers Instagram Support group what they would like to ask our Young Ambassadors Molly and Amanda about for guidance and advice. Our teens wanted to know more about talking to friends about a diagnosis.
This session was hosted by Jessie who works across both our Young Adults and Children and Families Support Teams; accompanied by Anita who works on our Adults and Safeguarding Support Teams. We asked the Young Ambassadors a series of questions about their lived experiences having a brain tumour diagnosis and their advice for talking to friends about a diagnosis.
Q&A: How to talk to friends about a brain tumour diagnosis
How old were you when you were diagnosed?
Amanda explained that she was diagnosed when she was a baby; she spent a lot of her childhood in and out of hospitals. When she was fourteen there was a change in her tumour, so she had treatment and a lot of time off school.
Molly expressed that she doesn’t know when her tumour first appeared, but that she was told when she was 16 years old.
Was your school supportive?
Amanda doesn’t recall feeling as though she needed specific support in primary school, which will be different for everyone depending on an individual’s symptoms and needs.
In secondary school Amanda had time off school for appointments. The school were quite supportive and had a learning support unit she could go to if she needed space or time out for any reason. Amanda had a lot of time off in secondary school due to treatment at the time of her GCSE’s. She had the support of a teaching assistant and access to an office if she needed to rest or some quiet time. She was able to leave school ten minutes earlier than everyone else to avoid crowds as well as being given a toilet pass, a medical pass and a time out card if she needed to leave a lesson for any reason.
Molly explained that certain aspects of support in school could be difficult at times and her parents persevered to get the correct support measures for her. Molly explained that she doesn’t feel any blame towards the school. She feels that schools don’t always know where to find the right resources to understand a student’s brain tumour diagnosis and the effects these can cause emotionally.
When support was put in place, Molly was given a teaching assistant in every lesson who was very helpful. They would help Molly to read. Molly also was given a toilet pass, so she could use the bathroom whenever it was needed.
At Sixth form Molly had access to the learning support unit for when she needed a quiet space. She had regular check-ins with the head of sixth form. Regular communication ensured Molly’s support was constant and she expressed that this worked well.
The Brain Tumour Charity has developed resources for teachers and schools to help support students both who have a diagnosis and students who are in school or class with someone who has a diagnosis.
Read and download our resources here.
How did you feel before telling your friends?
Molly said that she felt very nervous before telling her friends and the more she put it off the worse her nerves became. Molly compared the feeling to when you lay awake at night in bed because you need a wee and you know if you just get up and go, you’ll feel better, but you can’t bring yourself to get out of bed. Molly describes this as procrastination. Molly became worried about what people would think when she told them and said she imagined scenarios and problems in her head that she thought would happen.
Molly was selective about who she told, she started small. At the beginning she didn’t like saying ‘Brain Tumour’. She told people who she thought she would be friends with for a long time. Molly chose to have one-on-one conversations with each one of her friends rather than telling people in a group. She said this helped her be able to say, ‘Brain Tumour’ and also allowed her to think of how each individual may be affected, some friends may be shocked and upset and some could ask what a brain tumour is. Molly notes that being a teenager is a tricky age.
Some adults don’t know how to articulate themselves and their feelings, so it can be really difficult for teenagers.
Molly
Amanda didn’t tell anybody throughout school, only the teachers knew. When Amanda started having treatment during secondary school, she recalled withdrawing quite a lot. The treatment started not long before the six weeks summer holidays; She came back to secondary school without hair, following treatment, this is when Amanda began to tell people when they asked her questions. Amanda would answer by saying “I have a brain tumour” or “I am off school on Friday because I have a scan.”
Amanda said she didn’t tell people in one day and did this over time, and that this worked for her personally.
Amanda said her secondary school were supportive and offered her a separate room where she could bring the friends that she wanted, to explain to them first what was happening. Amanda picked four of her closest friends and said, “I have a brain tumour and I’m getting treatment for it at the moment, this is why I have lost my hair, this is why I have been distant, and I will be out of school some more.” Amanda noted that some questions she felt comfortable answering and others she didn’t, she would communicate when she wasn’t comfortable, she also shared more with some people than others.
Don’t feel obliged to answer people’s questions because you don’t have to.
Amanda
Amanda says that she condensed information for her friends and told others the very basics. Amanda says that people would ask her, ‘When did you find out you had a brain tumour?’ and she would say, ‘I’ve had it all my life’ and they would ask, ‘why didn’t you tell me?’ And she would say, ‘You didn’t need to know; I’m only telling you now because I’ve lost all of my hair.’
How did you feel after telling your friends?
Molly felt a definite sense of relief and that a weight had been lifted off her shoulders. Molly said that she looked physically unwell, and that people could see that. Rumors in school started to form about this before people knew she had a brain tumour. Molly thought she could either let the rumors continue or address them. Molly addressed the rumors and said, “If this were to happen to me now, I might just have let them carry on, because me and my close friends knew the truth.”
Some people did withdraw from her at first but after a while some of them came back and apologised. They explained that they needed time to process, Molly said that she understood because she needed to process before telling them. However, when they did withdraw this could be very upsetting and some of the relief of telling friends turned into regret which then turned into guilt because she felt like she had done something wrong for them to withdraw. Molly felt like it was her fault that the friendship had ended. She held that guilt for a long time but deep down she knew logically that it wasn’t her fault for the breakdown of the friendship.
Molly said that she did, however, feel a huge sense of relief once her friends knew. Her mum told her ‘A problem shared is a problem halved.’
Molly recalled that some people treated her exactly the same way as they did before knowing about her diagnosis, and she personally liked this. She said she was walking slower, struggling with fatigue, looked different and could only come to school for half days so she thought everyone would see her differently but liked it when she was treated the same.
On the other hand, Molly recalled others being really helpful, which was also appreciated. People offered to help her down the stairs, opened doors for her, and there was a sense of community.
Question from teen: “What do I do if my friends just seem to brush off how much I have been through?”
Molly noted that peers and friends might not have met somebody else with a brain tumour before, so they might not know how to react, process, or understand. People might put up a wall to protect themselves. It can be difficult to have conversations and communicate your needs.
There are some fantastic resources available in accessing support to understand brain tumours. This could be parents reaching out to a charity whether it’s on behalf of a child with a diagnosis or a child who has a friend with a diagnosis, speaking to a trusted member of staff at school or school counsellors to gain a better understanding.
Communication could look like saying to a friend “I’m angry, I’m upset”, “I know I can have fun and seem okay sometimes, but that doesn’t mean I’m all better”, “I would like some validation.”
Molly expressed acknowledgment that these conversations can be difficult. As teenagers, we don’t always have the emotional abilities to express and receive how we’re feeling to friends out of fear of conflict. A person’s first reaction to the news might not be their final reaction; they might need some time to process. Once they have taken a breath and had some time, they might have a different, kinder reaction down the line.
Amanda suggested asking a trusted member within the school to help explain to your friends and peers if this is something you would like assistance with. You could also confide in a trusted member or staff about how you’re feeling. It could be helpful to get involved with your local brain tumour community if there is one, such as volunteer groups or support groups which offer peer support; they can offer advice.
A thought from Jessie: Explaining changes you’ve experienced as well as what you have been through and may still be going through can be really challenging to explain as well as helping people understand. Especially when you may be processing what is happening and the changes yourself.
Here is an example of something you could say if it feels suitable for you: “I’ve been through a lot, I know it may be difficult to relate to. It means I might sometimes feel tired or emotional and need some more patience from others. I’m happy to answer any questions you have. Thank you for being my friend.” You can include any side-effects you may experience that you’re comfortable sharing when talking this through with friends.
Did you have a friend or friends who were very supportive? If so, what did they do?
Amanda said that her preference was to be treated the same as she was before people knew about her diagnosis. She recalled that she and her friends would always take the micky out of each other, in a funny way and it was never mean. When she returned to school following her treatment without her hair, one of the first things her friend said to her was a joke about her shoes. The friend said nothing about Amanda’s hair loss, just like it was before, and Amanda said that it was so nice.
Once everyone had gone to class, the friend asked Amanda how she was and checked if everything was okay, asking if she needed anything. ‘Normal conversations’ were the best ones. When she had been sick or hadn’t slept for twenty hours, Amanda said it is nice when people ask, ‘Have you seen this movie?’ ‘What music are you listening to at the moment?’ Amanda recalled these as some of the best relationships and friendships.
A thought from Jessie: It is important to note that while Molly and Amanda both preferred to be treated the way they were before people knew about their diagnosis, this might not ring true for you, a young person with a diagnosis. You may feel what you have been through has been ignored and your friends aren’t showing care. In some cases, friends might act like nothing has happened because they might think this is what you want. This is why it is so important for both parties to communicate. This can be extremely difficult for anyone of any age and can feel daunting. Hopefully the advice within this piece can help with this.
This isn’t about blame or accusations but about sharing how you feel. If you express how, you feel and your needs from a friendship and the other person doesn’t understand, this isn’t your fault, and it might not be theirs either, as we are all growing and learning.
Molly recalled that she met her best friend through learning support. The friend first approached Molly asking if she would like to play scrabble, Molly said yes. Every day following this Molly wanted to go to school because she knew her friend was going to be there and that they’d play Scrabble. It made her feel like ‘Molly’ because scrabble has nothing to do with brain tumours.
Molly acknowledged that everyone is different so maybe it is about finding a balance. Some people might want a friend they can be upset with; some might want a friend who acts like nothing’s happened and other people might need both.
When you felt like people didn’t understand or weren’t supportive, what was your approach in dealing with this situation?
Amanda advised that some people are only meant to be in our lives for a short period of time. It doesn’t have to be fall outs and break ups. You can sometimes look back and enjoy the time that you had with people and move on to the next section of your life. You will make some more amazing friends. It’s great when you’re a child and you think that these friends are going be in your life forever. Sometimes that might be the case, and other times it won’t be; and that’s okay. Amanda added that being a teenager and having a diagnosis as well is difficult; Amanda questioned her responses, thinking “was that an ‘Amanda’ response?” or “was that a response because of my diagnosis?” or “was that a response because I’m a teenager?”
Molly recalled that when people weren’t supportive, she didn’t do or say anything in response to this but wishes that she had. When it came to negative friendships, Molly continued these friendships and would feel sad and blame herself. Molly reflected that when we are teenagers, we’re still growing, we forget that and the pressures of school and of being a teenager are difficult as it is. Molly said that we need to be kind to ourselves.
What would you recommend to friends of someone with a diagnosis on how to be supportive with certain symptoms?
Amanda said that it’s great to still include your friend with the diagnosis. They might not be able to come along to everything, but it is important to still invite them to make them feel included. They might be able to come, even if it’s for an hour. If there’s a sleepover, they might not be able to stay over, but they might be able to come for a couple of hours.
Molly spoke about emotions and personality changes and recalled that certain things made her feel upset and angry; for example, one time she was asked to read out loud and she couldn’t and that this didn’t feel nice. Molly often felt tearful or angry and some of her peers didn’t understand why she was having personality changes or being emotional, which was difficult. Therefore, it is important to be kind and understanding if someone is seeming more emotional than usual or acting differently to consider the reason and offer communication.
We here in the support team are here to support anyone affected by a brain tumour diagnosis. Please do not hesitate to contact us. Our telephone number is 0808 800 0004 and our email address is support@thebraintumourcharity.org We are available Monday-Friday – 9am-5pm.
Special thanks to our teens within our teen Instagram support group for feeding into this work and Molly and Amanda two of our Young Ambassadors, for offering their advice and guidance. You can find out more about our Young Ambassador programme here.
Join our Teenagers Instagram Account
If you’re aged 13-17 and living with a brain tumour diagnosis, our private Teenagers Instagram Account is a safe place you to share your thoughts, feelings, and any questions you have.
Support and Information Services
Research & Clinical Trials Information
You can also join our active online community.
In this section
Supporting you
Our Children & Families team offers support to children, young people and families affected by a brain tumour diagnosis. We’re here to help with any information you might need, answer your questions, listen and provide support.
Let’s talk about Brain Tumours Podcast.
The Brain Tumour Charity Podcast, Let’s talk about Brain Tumour’s is about those who have been affected by a brain tumour diagnosis. They share their experiences and raise awareness. The topic of Episode 45 Mummy has a lump: is about talking to children about a parent’s diagnosis.
Share your experiences and help create change
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.