The impact of lymphoma on relationships

Changes and challenges within relationships

Whether you are the person with lymphoma, or you are supporting someone through, or caring for someone who has lymphoma, there are likely to be some changes and challenges within your relationships. These could be short or long-term, and it can take time to adjust to them.

You might experience changes in relationships with friends, colleagues or acquaintances. Likewise, if someone you work with is affected by lymphoma, you might feel unsure about how to deal with this and what to say to them. If you or your partner are diagnosed with lymphoma, it’s very likely that there’ll be an impact on this relationship too. For example, you might need to make some temporary changes to who does what in terms of household tasks. It can take some time to adjust and adapt to the ‘new normal’.

Very often, at the centre of tensions and relationship difficulties is a misalignment (‘mis-match’) of feelings and expectations. Misunderstandings can arise and lead to hurt feelings. 

Although it can take time and patience, many people adjust well to changes in their lives. Some describe a greater sense of connection in some of their relationships. 

What can help with challenges in relationships?

In general, effective communication can greatly benefit relationships. Research suggests that people tend to cope better with change if they are supported by strong relationships.

Mental Health Foundation produce information about healthy relationships. They also have a summary report on relationships in the 21st century. This outlines how relationships can benefit emotional wellbeing and sets out key steps to improving relationships:

• Time: set aside time to connect with friends and family.
• Presence: be fully ‘with’ the person or people you’re with, rather than trying to multitask or thinking about what you’ve just done or are going to do later.
• Listen: focus on the person you’re talking to and really pay attention to what they’re saying.
• Be listened to: talk with honesty and let yourself be listened to.
• Recognise healthy and unhealthy relationships: choose to spend time with the people who have a positive impact on your mental wellbeing, and limit the time you spend with the people who have a negative impact on how you feel.

Think about your life is a website that offers free, downloadable ‘thinking tools’ to help you live well. This includes a relationships map and a communication chart.

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If you are the person with lymphoma

We often hear that people feel others don’t really understand that they’re unwell if they look well. This can bring a range of feelings, including frustration, a sense of isolation and of being unsupported. 

You might have a sense that others expect you to get back to ‘normal’ soon after treatment. This can feel insensitive and frustrating. You might feel as if they have no idea what you are going through.

Some people feel that friends and acquaintances seem to avoid conversation, possibly because they worry about upsetting them. It might feel difficult knowing how to deal with work and colleagues, for example, if you need to take time out or change your hours or responsibilities. It might help to reassure people not to worry about saying ‘the wrong thing’. Let them know that you’re still you and encourage them to be as natural as possible with you.

Some people tell us that it’s a challenge to deal with others’ responses to their situation – for example, it can be hard to have to go over your diagnosis and to explain what certain medical words mean. Many people don’t know much about lymphoma before they, or someone they know, is diagnosed. 

It can be difficult to manage others’ emotions and questions about lymphoma. For example, friends and family might worry if your medical team has recommended active monitoring (‘watch and wait’), where you don’t start treatment straightaway. They might think that this will have a negative impact on your outcome, even though this is not what the evidence suggests. You might find it helpful to signpost them to our books and information. You could also let them know that our helpline services are also available to help support them.

We often hear that friends and family find it difficult to understand active monitoring (watch and wait), where you don’t start treatment straightaway. We’ve got information to help explain this approach, and we’re here to help you to make sense of things.

Sharon, Lymphoma Action Helpline team member

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If someone close to you has lymphoma

If you are caring for someone who has lymphoma, you might feel that others don’t understand the range of possible challenges it can bring. For example, those around you might not grasp the emotional impact of the diagnosis on you. This could include the person who has lymphoma, particularly if you are trying to protect them from your feelings or to present a ‘positive’ and optimistic outlook. Lymphoma can be especially impactful on partner/spouse relationships, presenting various challenges as you both adjust to living with and beyond lymphoma.

If you work, you might have changed your working hours to help you care for the person. Colleagues might not realise the level of support you provide and how much energy this can take. Think about what you’re comfortable with others knowing and what you might say to the people you work with. Consider talking to your HR department or line manager for support with this. Remember that we’re here for you too. 

There might be a gap between what you’d like to know about the health of the person you care for and what they’re willing to share. This can be stressful and cause tension within the relationship. Consider possible reasons behind the person’s choice not to involve you more. For example, they might be trying to keep a sense of their independence and control, taking time to process information on their own, or guarding your feelings. Show that you’re willing and ready to talk if and when they’d like to, but accept that there might still be a difference between your wishes and what they’re comfortable with sharing. 

Communication can sometimes feel difficult – we’ve got tips you might like to try in our separate information on communicating with the people around you. You might also be interested in our book for family and friends, which provides practical tips and emotional support.

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You and your partner

Lymphoma can have a significant impact on a relationship between you and your partner. For example, there might be changes in terms of everyday tasks, such as who does the food shopping. You might have different ideas about the best approach. For example, you might prefer to quietly process information after a hospital appointment while your partner has lots of questions to ask your medical team and prefers to find out as much as possible.

If your partner has lymphoma, you might want them to rest as much as possible and keep their physical activity to a minimum; however, this might clash with their wishes. If you take on additional tasks, your energy levels might be affected, which can in turn affect your emotional wellbeing.

If you are the person with lymphoma, you might struggle emotionally and feel frustrated in taking time out of doing all the things you usually do, even if this is short-term. You might feel reluctant to ask your partner for help with the things you ordinarily do.

Such differences can lead to frustration and a sense of distance between you and your partner. Small changes can build up to be a lot to adjust to, and can affect how you feel individually, and as a couple. Although it can take some work, it’s important to find ways of communicating effectively.

It’s also important to spend time together as a couple, away from thoughts about lymphoma. You could share a hobby together, go for a meal, or even just a walk, agreeing that you won’t talk about lymphoma during this time.

My wife was affected by non-Hodgkin lymphoma. For us it was important to understand lymphoma, and to communicate openly. From a carers’ perspective, I think it’s vital to understand your own feelings, as well as those of the person who’s been diagnosed, and to offer as much support as possible.

David, whose wife was affected by lymphoma

Sexual intimacy

Although you might need to take extra precautions during and after chemotherapy, physical intimacy can enhance your wellbeing and build emotional connectedness. However, sexual difficulties and lack of desire (libido) are common when you have lymphoma. They can happen for various reasons including changes in body image and lowered self-confidence, heightened stress, anxiety or feeling fatigued and feeling generally unwell. Some types of chemotherapy can cause temporary erectile problems (impotence) in men. Ask your medical team for advice if this affects you.

If your partner has lymphoma, you might worry that sex could harm them. Rest assured that it is generally safe, although it’s best to check with your partner whether their medical team have told them about any precautions they should take.

Talking about sex

Let your partner know how you’re feeling and ask them if they, in turn, could let you know how they’re feeling. Sex and intimacy can feel uncomfortable to talk about but can become easier once you get started. 

You and your partner might find it helpful to talk with the support of a psychosexual counsellor, a professional who specialises in relationship and sexual difficulties. You can find out more about psychosexual counselling on the Let’s talk about it website. If you’re interested in speaking to a psychosexual counsellor, you could ask your doctor if they’re able to refer you on the NHS.

You might also consider paying for help, for example, through Relate, a charity that offers couples therapy. You can use online search tools to find a private therapist in your area through the College of Sexual and Relationship Therapists (COSRT) and the British Association for Counselling & Psychotherapy (BACP).

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Working with someone who has lymphoma

If you work with someone who’s been diagnosed with lymphoma, it can be hard to know what to say to them. As with most topics, it can become easier to talk once you start. You could start by saying just that – that you’re unsure what to say.

You might like to read some of our basic tips on effective communication. Our helpline team is also available if you’d like to talk about how you’re feeling or about any aspect of lymphoma.

If you are the employer of someone with lymphoma, Macmillan Cancer Support offers a range of information, resources and training to help you support the person at work.

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