Communicating with the people around you about lymphoma

Lymphoma can affect relationships with family, friends and colleagues in different ways. This information offers tips to help you communicate well with the people around you, whether it’s you, or someone close to you, who’s been diagnosed with lymphoma. We have separate information about the impact of lymphoma on relationships, talking to children if you have lymphoma and caring for someone who has lymphoma.

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Communication challenges

How effective communication can help

Communicating effectively

If you or the other person doesn’t want to talk


Communication challenges

Lymphoma can have an effect on relationships, which can bring challenges to communication within them. Sometimes, this can lead to strains or tensions. For example, you might be hesitant to say things because you don’t want to upset, anger or frighten the other person. You might feel worried about becoming emotional and so avoid conversation. 

In reality, when things go unsaid, it can create an uncomfortable sense of distance and isolation. Assumptions and misunderstandings can arise, which can feel hurtful and cause relationship difficulties. 

A further challenge might be that true feelings are often ‘disguised’. For example, sadness and loss might be expressed as anger and frustration.

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How effective communication can help

Talking with honesty can greatly help your relationships, which, in turn can enhance your emotional wellbeing. It gives you, and the person you’re talking to, an opportunity to feel understood and emotionally connected.

Taking time to talk about how you’re feeling can also be particularly helpful where emotions are expressed in other forms. For example, fear and worry might be expressed as frustration; feeling hurt or rejected might be expressed as anger, ‘sulking’ or ignoring the other person.

Although relationships are not always easy, people cope better with challenges when they are well-supported by those around them. The benefits of strong relationships can include:

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Communicating effectively

It’s common to notice differences in your relationships when you’re affected by lymphoma – whether it’s you or someone close to you who’s been diagnosed. There might be times when you feel unsure how to talk to one another, about lymphoma or about anything else. There’s no right or wrong way, so try to be guided by your instincts. We give some tips below that you might like to consider. 

Below, we outline ‘I statements’, which can be a helpful tool to help you to express yourself.  

Listen

The value of listening is often underestimated, particularly if you feel there is nothing you can do to ‘fix’ a situation. Acknowledge that you are unable to make it go away. Suggesting solutions to someone, particularly straightaway, can feel dismissive of their feelings. Sometimes, even if the person isn’t usually someone who likes to talk about their emotions, they might choose to share a bit about how they feel if they’re given the opportunity.  

  • Take time to really listen to what the other person has to say.
  • Let the person speak without interrupting or changing the subject.
  • Give the person space to express how they feel rather than trying to fix or lighten the situation. You could say something like: ‘that sounds really tough’ or say nothing at all and offer a hug or place your hand on their arm.
  • Acknowledge the person’s feelings rather than telling them to ‘be positive’. Sharing fears and anxieties can help to relieve tension and bring a sense of emotional connectedness and understanding.
  • Repeat back in your own words (paraphrase) what the other person says. If you’re not sure what they mean, ask. This gives you a chance to check that you’ve understood and can help show the other person that you’re really trying to understand them.

Relate has more information about why it’s important to be a good listener and tips to help you to be a good listener.

Be honest about how you feel

Not everyone feels comfortable with talking openly about how they feel. It can be an emotional experience and might feel daunting, especially if it’s not something you’re used to. There might be cultural differences to consider too. This might include, for example, what is ‘normal’ within families (‘subcultures’), as well as in how people from different ethnic backgrounds feel comfortable with expressing themselves.

If you are the person who’s been diagnosed with lymphoma, think about what information you’re comfortable with sharing. You could send a group email with your news to save you repeating your updates and having similar conversations. Another idea is to have a key contact to share information with groups of colleagues and acquaintances for you. 

  • Recognise the effect lymphoma has had, and continues to have, on your relationships. Think also about the impact it’s had on other areas of your day-to-day life, as this can affect your relationships. For example, if you’re no longer able to do the work you used to, you might feel more reliant on your partner financially. It can be more difficult to deal with these changes if you haven’t given yourself an opportunity to process these changes and how you feel towards them. 
  • Respect other people’s feelings and approaches to dealing with their emotions. Even if you find someone else’s reaction difficult to understand, be respectful of it. You can acknowledge it, too, for example, by saying something like: ‘it sounds as though that was really frustrating for you’, or ‘I can see that you feel angry when…’.
  • Set aside some time to talk. Find a time where you are free from interruptions and can really listen to each another. You might find it helps to write down the main things you’d like to say. You could start with something like: ‘Although it’s hard for me, it’s important to tell you how I’m feeling. I’d really like to hear how you’re feeling, too’.
  • Consider using ‘I’ statements, which can be a helpful way of expressing yourself while lowering the risk of hurt, angry responses.
 
I felt like something had flipped a switch in my head – telling me to give myself time and accept the changes in my life. It is at this point that my art making changed, and I turned to writing. I felt a complete freedom in writing, and documenting my experiences was very empowering. Writing felt immediate and completely private, and I found being creative in a different way incredibly cathartic.
Sarah, diagnosed with Hodgkin lymphoma

‘I’ statements

‘I’ statements can be a helpful way to talk honestly. They focus on you and your feelings instead of another person’s behaviours and actions. They can help you express yourself while lowering the risk of angry, hurt or defensive responses and the perception of blame. 

When using ‘I’ statements, think about: 

  • how you feel or felt and why
  • how you’d like things to be different, possibly with an idea for how this could happen.

Examples of ‘I’ statements are given below.

If you are the person with lymphoma:

  • Statement: ‘You’re always telling me to rest’
  • Rephrased using ‘I’ statements: ‘I felt frustrated yesterday when you told me to rest – I had a bit more energy and really wanted to help clear the dishes after dinner. I like to be able to do these ‘everyday’ things. How about we make an agreement – you let me help out and I’ll let you know if I’m tired. How does that sound?

If someone close to you has lymphoma:

  • Statement: ‘Why don’t you ever tell me what’s going on? It’s not fair to leave me worrying when you go for appointments.’ 
  • Rephrased using ‘I’ statements: I’d like it if you could tell me a bit about your upcoming appointments so that I can support you. At the same time, I respect your boundaries and that you might not want to talk about them. Maybe you’d consider telling me what you’re comfortable with telling me, either before or after your appointments? You could also let me know what I could do to help you.

You’ll find a section about relationships, including effective communication in our Living with and beyond lymphoma book. We also have a book for family, friends and carers: When someone close to you has lymphoma.

Relate has more about communication challenges and tips.

You might also be interested in the resources available on the Think about your life website. These are free to download and include ‘thinking tools’ to help you live well, including a relationships map and a communication chart.

Let the other person know what would help you

Generally, people want to help, although they might not know quite how. Support can take a range of forms, practically and emotionally.

If you are the person who has lymphoma, let others know how they can help you – for example, by preparing meals or organising something fun. It might be that you’d like someone to go with you to healthcare appointments for emotional support or to help remember what information you’d like to get from them. 

If you are caring for someone who has lymphoma, talk to them about how you’re feeling. Although you might feel that your priority is what they want, it’s also important to acknowledge your own feelings too. You could try using ‘I statements’ to help. You can also ask the person what they would like from you. Be aware that this might include giving them some time alone and respecting their independence. We have separate information that gives suggestions on offering emotional support and practical support if someone you love has been diagnosed with lymphoma. 

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If you or the other person doesn’t want to talk

Although talking can bring great benefits to relationships and emotional wellbeing, there might be times when you don’t want to talk or the other person doesn’t want to talk.

There might be times when you feel your relationships are strained. It can help to acknowledge this, for example, by saying something like: ‘I feel like things have changed but I want you to know that I care about our relationship. I often feel unsure what to say – it’s as though we’re both finding our way through this’.

What if I don’t want to talk?

An awareness of your emotions, and connecting with those around you, is an important part of mental wellbeing. However, there might be times when you don’t want to talk about how you’re feeling – let the people close to you know if this is the case. If you just want to talk about everyday things or to do something fun together, tell them this. 

Instead of giving updates about your health, you could consider giving people just brief information, or writing a blog that you give them access to.

You might find it easier to talk to someone who isn’t close to you. For example, you could talk to:

 
I was diagnosed with diffuse large B-cell lymphoma (DLBCL) and found the Lymphoma Action Closed Facebook Support Group and charity’s helpline, which were a huge help for me along my journey. Whenever I had a question, or just needed a moan, someone was always there to listen.
Melinda, in remission from diffuse large B-cell lymphoma

What if the other person doesn’t want to talk?

Sometimes, the person diagnosed might not want to talk about lymphoma. They might prefer to have a general conversation (‘small talk’) about everyday things like the latest TV drama or their favourite sports team. It can be helpful to take time away from thinking about lymphoma to do something fun together, such as a shared hobby. Some people have ‘non-lymphoma days’, where they agree not talk about lymphoma.

 
A lot of the time, in my experience, it is a simple look of understanding from your partner that will acknowledge how you are feeling and how much energy you might have.
David, diagnosed with low-grade B cell skin lymphoma
  • If you are unsure what to talk about, say so. You could say something like: ‘I want to say the right thing but in honesty, I don’t know what that is’.
  • Take care with giving advice. You might be keen to give tips, for example, about certain foods you think might help. Remember that each case of lymphoma is different. Doctors will give tailored advice based on the needs of the person with lymphoma.
  • If you’re away from one another, find ways to express your love and care. Send a card or email, or get in touch in other ways, such as by phone or video call.

Relate gives tips about getting a partner to ‘open up’ about their feelings.

It can be difficult to deal with emotionally if you want to talk but the person with lymphoma doesn’t. Our helpline team are here to support you. They might also be able to put you in contact with a buddy who has similar lived experience of having someone close to them who’s been diagnosed with lymphoma.

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Further reading