Watch our webinar, where carers and healthcare professionals talk about the role of family, friends and carers in supporting someone who has lymphoma, the impact on them and support available.
Adjusting to a life with lymphoma can put pressure on your relationships. You are likely to experience changes to some of your relationships; for example, with a partner, husband or wife, some family members, and friends and acquaintances. Some relationships may become strained while others grow closer. Being honest about your feelings and finding ways of communicating effectively can be deeply beneficial to your relationships and emotional wellbeing.
Although each person’s experience is unique, some feelings are widely experienced; we outline some of these below. You might also find our separate page about the emotional impact of lymphoma helpful.
Fear is a natural response to a diagnosis of lymphoma. You face a new and unsettling situation. You’re bound to have questions, some of which can’t be answered with certainty. Even in remission (no evidence of disease), many people fear that the lymphoma will return (relapse).
People cope with fear in different ways. You might withdraw from the people close to you. You might try to protect them and pretend you feel fine. Some people express fear as anger, resentment or irritation.
Although it can be difficult, it often helps to be honest about how you feel, even if that means saying something like, ‘I don’t really want to talk about it in depth at the moment, but I’m scared and I’m not sure how to deal with that’.
Anger and resentment
You might feel angry and resentful that lymphoma has become a significant part of your life. It can be difficult to see the people around you carrying on with their everyday lives.
Some people find it hard to accept changes in roles. For example, you may be used to your independence, but now rely more on a family member for transport. Such changes can add to a general sense of anger, loss and resentment.
You might feel more stress, and less patience and tolerance than before your lymphoma diagnosis. Perhaps you’re tired of explaining your situation and feel dismissive of others’ words, particularly if they seem to speak in common phrases or clichés.
Often, people mean well, for example giving advice about certain diets or the power of positive thinking. However, these sort of comments can make you feel distant from them. Keep in mind that they are trying to be supportive and helpful. If you feel able to, gently let them know that you appreciate their kindness and warmth, but that you are receiving the information you need from your doctors.
Feeling that there is a lack of understanding from others
People with lymphoma often say they feel others don’t understand them. For example, they might not fully grasp that you are unwell if you 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 be frustrating and feel as if they have no idea what you have, and continue, to go through.
Some people tell us that it’s a challenge to deal with others’ responses to being on active monitoring (watch and wait) where you don’t start treatment straightaway. Family and friends might be distressed or angry that you aren’t being treated immediately. It can be tiring to explain the reasoning behind this approach. You might find it helpful to direct people to our information about active monitoring. Our Information and Support Team is also available to you, your family and friends to talk about active monitoring, or any other aspect of lymphoma.
Feeling that others are over-cautious
People with lymphoma often say that others seem very careful not to upset them. Some feel that friends and acquaintances pretend not to see them and cross over the road to avoid conversation. This is probably for fear of saying the wrong thing. Although these people are not acting out of spite, it can still feel isolating. It might help to reassure people not to worry about saying ‘the wrong thing’ and to encourage them to be as ‘normal’ and natural as possible with you. You might find that getting this out in the open feels a relief to you both.
You might have different ideas from the people close to you about what is best for you. For example, people might urge you to ‘take it easy’, fearing that you could overdo it. You might find this restricting and want to carry on with your daily routine as far as possible. Try to be honest about how you feel – if frustration builds up, it can add to your level of stress and put strain on your relationships.
At times, you and your partner might have different states of mind. Perhaps you prefer to quietly process information after a hospital appointment while your partner does further research to find out as much detail as possible.
You might have different ideas about what is best for you, for example, in terms of your level of daily activity. Your partner might encourage you to slow down or try to do things for you. Although there’ll be times when it’s a good idea to accept help, you might want to carry on with your daily routine as much as possible. Such differences can lead to frustration and a sense of distance between you and your partner so it’s important to find ways of communicating effectively.
It’s important, too, 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.
Watch Sue and Neville talk about their experience of caring for each other through Sue's diagnosis of follicular lymphoma.
This video was created when Lymphoma Action was called the Lymphoma Association. The content is still up to date.
Healthtalk.org shares personal experiences of the effect of cancer on relationships with a partner, husband or wife.
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, feeling stressed, anxious or fatigued, and feeling generally unwell. Some types of chemotherapy can cause temporary impotence in men. If this is the case, ask your medical team for advice.
Although you may need to take extra precautions during and after chemotherapy, physical intimacy can enhance your wellbeing. It can also build feelings of emotional connectedness. Be open with your partner and talk to them about how you feel about sex.
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).
If your partner has lymphoma
If your partner has lymphoma, be aware of some of the sexual difficulties they might experience. Some people worry that sex could harm their partner. 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.
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.
Where can I find out more?
- Macmillan Cancer Support offers information about sex and cancer.
- Relate offers relationship support. They have tips on how to talk to your partner about sex.
- The Dana-Farber Cancer Institute also have information about sexual intimacy during cancer treatment.
- The National Cancer Institute website has information about adjusting to cancer in your personal relationships, as well as about self-image and sexuality.
People are often unsure how to respond to the news of a cancer diagnosis in someone they know. Some people withdraw, while others want lots of information. Responding to questions can be tiring and might, at times, feel as though people are in your personal space.
Think about what information you’re comfortable with others knowing. You could then 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. You might also be interested in our information about effective communication and about working after cancer.
Working with someone who’s affected by lymphoma
If you work with someone who’s been diagnosed with lymphoma, it can be hard to know what to say to them. You might like to read some of our basic tips on effective communication. Our Information and Support Team is also available if you’d like to talk about any aspect of lymphoma.
If you are the employer of someone with lymphoma, you might be interested in Macmillan Cancer Support’s Macmillan at work programme. This allows you to sign-up to receive a free toolkit and access to expert training, resources and advice to help you support staff affected by cancer.
Many people find it helps to speak to others who are affected by lymphoma. Even though your experience won’t be the same as someone else’s, it can be comforting to speak with someone who can relate to you from their own experience of lymphoma.
Lymphoma Action runs a Buddy Service and may be able to put you in touch by telephone or email with someone in a situation similar to yours. You can also use our online Community Forum or social media to be in contact with others affected by lymphoma.
If you prefer to meet others who are affected by lymphoma in person, we run support groups around the UK. Use our online search tool to find your nearest group, or get in touch with our Information and Support Team.