1 in 5 people we spoke to experienced communication difficulties caused by a brain tumour diagnosis.
It’s important to remember that not everybody who is affected by a brain tumour will experience communication difficulties.
For those that do, the symptoms and severity can differ from person to person, so you may not have the same problems as someone with a similar diagnosis and treatment plan.
What communication difficulties might someone with a brain tumour experience?
There is a range of different communication difficulties that you may experience:
- language impairment (also known as ‘aphasia’)
- speech difficulties
- cognitive difficulties can lead to communication difficulties due to forgetting words, losing the thread of a conversation, or not knowing when to talk and when to listen during a conversation.
Track your journey with BRIAN
BRIAN’s quality-of-life tracker lets you monitor how you’ve been feeling and better understand your ups and downs. You can then share this with your loved ones and healthcare team to show them how they can best support you.
What causes communication difficulties?
Position of the tumour
Whether and how a brain tumour affects your communication skills will depend largely on where it is in the brain. Each section or lobe of the brain is responsible for different functions, some of which are involved in communication.
For example, the frontal lobe is involved in language production and the temporal lobe is involved in understanding language. As a result, if your tumour is in one of these lobes, pressure from the tumour itself, swelling around it or treatment directed at that area may have an effect on your communication skills.
The brain is also divided into two hemispheres – left and right. The side on which your tumour is located, as well as the lobe, can affect the type and likelihood of communication effects. If your tumour is located in the left hemisphere, you are more likely to experience language and speech difficulties, as this is where the language areas are generally found. (It is important to note that for some people, the language areas are found in the right hemisphere.)
Brain tumour surgery can also cause communication difficulties, if the area of the brain operated on is involved in communication. These effects may be temporary and reduce with recover, but some effects may be more permanent if that area is removed or damaged.
Oliver Highway, diagnosed with a glioblastoma in 2012
“After surgery to debulk my brain tumour, I was told I had dysphasia (partial loss of my ability to speak and write), caused by the tumour and the surgery. I couldn’t remember words and often wrote gibberish. I had speech therapy and did improve, but it’s an ongoing effort to keep it at a good level.
“When your communication is affected, it can cause awkwardness and misunderstandings. I’ve learnt it helps to support the people you’re talking to. I pushed myself to keep speaking to people, and, if I got something wrong, I’d ask for help,
“I didn’t feel embarrassed because I started with friends first. This gave me confidence to speak to people when I went into town. And now I’ve also done speeches. If I forget a word, I ask the group to help and make it into a fun game.
“The most important thing I’ve learnt is to keep looking forward. Things might not go back to how they were, but the one thing you can do is crack on and be positive.“
Join one of our Online Support Communities for more stories and tips about coping with a brain tumour diagnosis from people who know what you’re going through.
Coping with communication difficulties
The ability to communicate is something we often take for granted. When communication difficulties occur, they can make us feel frustrated, angry, embarrassed and isolated.
But, it’s important to remember that communication is a two-way process. As well as strategies that make communication easier if you’re living with a brain tumour, there are ways for family and friends to listen better and speak more clearly.
We’ve spoken to people affected by brain tumours and healthcare professionals to collect tips that make it easier to cope with communication communication dfficulties.
Difficulties communicating can place a huge amount of stress on even the healthiest relationship. In our Losing Myself report, 2 in 3 people said a brain tumour diagnosis had a negative impact on their relationship with their partner.
By launching our free Relationship Support Service in partnership with Relate, we hope to support couples as they manage the extra strain on a relationship that can be caused by a brain tumour diagnosis.
Ed from Kent was diagnosed with a Grade 4 glioblastoma in June 2018 after he collapsed at work. He and his wife have recently been using the relationship service the Charity offers in partnership with Relate to help support him as a husband and father.
“My wife and I had been together for 10 years when I was diagnosed. Until then, our relationship had been so carefree. From day one, we knew that we had a long-term future together and we had a good grasp of what we both wanted that to look like too. However, my diagnosis threw all that into question overnight. We did still get married just nine months later and we soon welcomed our first child after going through IVF.
“The diagnosis really changed how I viewed myself and how I felt that other people saw me too. All of a sudden, I needed help and support to complete what should be really simple tasks. I thought that I had become a burden – someone who needed caring for – and it really knocked my confidence. This resulted in a total lack of interest in the physical side of a relationship.
“The relationship service with Relate was so empathetic. I quickly built a rapport with a professional ear which gave me the confidence to discuss in detail the emotional and practical barriers which were creating the issues in my relationship. We talked openly and real effort was made to understand my situation, offer practical solutions and also understand that sometimes maybe I didn’t want to talk.
“If someone is looking for practical or emotional relationship advice, I can’t recommend it highly enough to help navigate the tricky ways in which a brain tumour diagnosis can impact on a relationship.”
Tips from our community
“Asking my partner to describe things to me helps when they’re having difficulty finding their words.”
“At the start you think you’ll never get back to normal, but it seems to happen without you even noticing – patience is key! I’m now very honest with people if I’m struggling with my communication and reassure them that I’m not thick, I’m just a brain tumour survivor!”
“I always remind my partner that what they’re trying to say is important, not how they say it. I encourage them to use gestures, do a drawing or write it out, rather than stressing too much about forgetting words.”
“I struggle to follow conversations when more than one person is talking at the same time. I warn people about this now because it can seem like I’m not interested in the conversation.”
Join one of our our Online Support Communities for more tips about coping with a brain tumour diagnosis, from people who truly understand what you’re going through.
Download our factsheets
If you're finding communication more difficult because of a brain tumour diagnosis, you may find our factsheet about cognitive difficulties helpful.
Our coping with cognitive difficulties factsheet is packed full of tips to lessen the impact of any cognitive effects caused by a brain tumour.
If your communication difficulties are caused by issues around speech and language, you may find this factsheet helpful.
Discover a wide range of tips and advice on how to cope when you're experiencing speech and language difficulties.
Support and Information Services
You can also join our active online community.
In this section
Know the Signs and Symptoms
Although brain tumours are rare, if you or a loved one are experiencing two or more of the signs and symptoms it’s important that you speak to your doctor to rule out a brain tumour.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
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.