Having lymphoma can put pressure on your relationships. You are likely to experience changes in some of your relationships, eg with a partner or spouse, some family members, even with your friends and acquaintances. Some relationships may become strained while others may become closer.
As well as coping with your own feelings, you may feel pressure to deal with the emotions of the people around you. Each person’s situation and relationships are unique, but some experiences might be considered universal.
Fear is a natural response to a diagnosis of lymphoma. You face a new, unsettling situation and you are bound to have questions, some of which cannot be answered with certainty. If you are in remission (no evidence of disease), it is common to fear relapse (that the lymphoma will return).
People cope with fear in different ways. You might, for example, withdraw from the people close to you. You might try to protect them and pretend you feel all right. Some people express fear as anger, resentment or irritation.
Anger and resentment
You might feel angry and resentful that lymphoma has become a significant part of your life, especially as you didn’t choose it. It can be difficult to see the people around you carrying on with their lives as normal.
Some people find it hard to accept changes in roles. For example, you may be used to being independent, but now you rely more on a family member for transport. Such changes might sound small but they can add to a general sense of anger, loss and resentment.
The stress of having lymphoma can make relationships difficult. You might feel tired of explaining your situation to others. You may feel irritated by the so-called ‘little things’, leading you snap at the people around you.
People may seem to speak in platitudes or clichés, and you may feel dismissive of their words. You may feel irritated by the well-meant advice of others, for example, about certain diets or the power of positive thinking. Such comments can make you feel distant from the people around you. Keep in mind that they are doing their best to be supportive and helpful.
Feeling that there is a lack of understanding from others
People with lymphoma often say they feel other people don’t understand them. For example, because you look healthy, people around you might not fully grasp that you are in fact unwell. This can bring a range of feelings, including frustration, a sense of isolation and of being unsupported.
Some people tell us that it is a challenge to deal with others’ responses to ‘watch and wait’ (active monitoring of your lymphoma, rather than having treatment straightaway). Family and friends may react with distress or anger that you are not receiving treatment immediately. It can be tiring to explain to them the reasoning behind this approach.
Should this be the case, consider directing people to our website where they can read more about ‘watch and wait’. Let them know that our helpline team are available if they would like to talk about any aspect of lymphoma. You can reach our Information and Support team on 0808 808 5555.
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 been and continue to go through.
Feeling that others are over-cautious
Many people with lymphoma say that others are careful not to upset them. We often hear that people pretend not to see their friends and acquaintances diagnosed with lymphoma, and cross the road to avoid conversation. This is probably for fear of saying the wrong thing. Although these people are not acting out of malice, such behaviours can bring a great sense of loss and isolation.
In all of the above situations, communication is key.
When someone close to you has lymphoma, it can be difficult to know what to do or say. It can be incredibly painful to watch the person you love go through such a difficult experience. You might feel helpless and pressured to somehow make things better. Relationships can become strained.
What you can do to help
Listening is sometimes the best thing you can do. Listen to what a person has to say without interrupting or changing the subject. It can be tempting to say something positive when someone is feeling frightened or upset, but this can create distance. It might be better to say something like: ‘that sounds really tough’ or to say nothing at all and to offer a hug instead.
Try to stay with the person’s feelings rather than urging them to ‘be positive’. Sharing fears and anxieties may help to relieve tension and can bring feelings of connectedness and understanding.
If you’re away from the person, let them know that you love and care for them in whatever way you can. Send a card or email, or get in touch by phone or Skype.
Sometimes, the person with lymphoma may not want to talk about it. They might prefer general conversation about everyday things like the latest TV drama or their favourite sports team. Stay with the subject they raise. If you are unsure what to talk about, be honest. Say something like: ‘I want to say the right thing but if I’m honest, I don’t know what that is’.
Be careful with giving advice. You might be keen to pass on tips, for example, about certain foods you think might help. Remember that everyone’s experience is different. The medical team looking after the person with lymphoma will give them the tailored advice they need.
Learn about lymphoma and its treatments. This can help you to gain an understanding of what lymphoma is and what the treatment involves.
In terms of practicalities, ask what would be helpful. You could prepare meals, do household chores or help with childcare. You could provide transport and company to and from hospital appointments. You could offer to pass messages and updates on to other people to save the person who’s unwell the mental energy of giving the same information several times.
Find out more about the emotional impact of lymphoma. You could read some of the personal stories on our website. You can also watch short videos on our YouTube channel. Although everyone’s experience is individual, autobiographies might help you better understand what the other person is going through. Novels and films that feature a character with lymphoma, or another type of cancer, might also give you some insight into their experience.
Jan talks about her diagnosis of lymphoma and how her daughter, Liz supported her in her personal experience.
Taking care of your own needs
Be sure to take care of yourself as well as the person with lymphoma. You might be tempted to dismiss your own needs, but draining yourself of energy means you have less to give to others. You are in the best position to help someone else if you are fit and well yourself, both physically and mentally.
Some of the things you can do to take care of yourself are:
- Spending time with other people and not only the person who has lymphoma. It is not possible to give all of your energy to one person all of the time.
- Doing enjoyable and relaxing activities.
- If you are a full-time carer for someone with lymphoma, take time each day for a break – go for a walk or spend some time reading.
- Respecting the boundaries of the person with lymphoma. Although you want to help, remember that their space and independence is important and how much help they want may vary from day to day.
- Eating well and getting enough rest and sleep.
Talk to people close to you for emotional support. You might also find it beneficial to gain support through others who can relate to your situation from personal experience. Lymphoma Action’s support groups, online forums and Facebook page offer ways to connect with others who are caring for someone with lymphoma.
The charity Never Alone also offers an online support community for people who are caring for a loved one diagnosed with an illness.
Carers UK also offer support groups, forums and a helpline.
Relationships often become strained when misunderstandings arise. If things are left unsaid, it can create an uncomfortable sense of distance.
Tempting as it might be, try not to withdraw from the people around you. Although you are coping with challenging feelings, the people around you want to help. Talking and letting people know how you feel (even if you feel confused about how you feel) can be beneficial. Conversations provide an opportunity to connect – to understand what others are thinking and feeling or why they’re acting in a particular way. It also gives you an opportunity to be understood. This mutual appreciation can be extremely valuable to your relationship and to your mental wellbeing.
Although relationships can be challenging at times, research shows that people with cancer manage better when they are supported through strong relationships. The benefits include:
- reducing stress
- enhancing mental wellbeing
- encouraging you to pay attention to wider health and wellbeing needs.
Adjusting to life with lymphoma is challenging. At times, you and your partner might be in different frames of mind, mentally and emotionally. Perhaps you prefer to quietly process new information after a hospital appointment. Your partner might want to do a lot of research and find out as much as possible.
You may have different ideas about what is best for you, for example, in terms of your level of daily activity. Your partner might ask you to ‘take it easy’, fearing that you overdo it. You might find this restricting and want to carry on with your daily routine as much as possible. Such differences can lead to a sense of frustration and distance between you and your partner.
If communication becomes strained, you may find some of the tips outlined below helpful in improving communication. You can also apply many of these to other relationships, such as friendships.
Be honest about how you feel
This might be different to how your partner feels. You may find it an emotional experience to talk so honestly. Set aside time where you are free from interruptions and can really listen to each another.
Recognise the effect lymphoma has on your relationship and family life. Be open to talking about these issues. You may find it helps to write down the main things you would like to say to your partner. You could start by saying something like: ‘Although it’s hard, it feels important for me to tell you how I’m feeling. I’d really like to hear how you’re feeling, too’.
Although others want to help, you may sometimes feel as though they are overstepping the mark into your personal space and independence. Set boundaries you are comfortable with. Let them know, for example, if you want to be left alone and that you will contact them when you are ready to.
Use ‘I’ statements
‘I’ statements can be a helpful way of expressing yourself while lowering the risk of angry, hurt or defensive responses. ‘I’ statements focus on you and your feelings, as opposed to the other person’s behaviours. Using ‘I’ statements can take blame out of your communication.
- ‘You always get up and wash the dishes straight after dinner. Why don’t you ever just sit with me for a while?’
Rephrased using ‘I’ statements: ‘I know when you get up and wash the dishes straight after dinner you are trying to be helpful. I sometimes feel quite alone, though. I’d really like if we could sit for a while longer together, just to sit and chat.’
- “It really annoyed me yesterday when you told me to sit down and rest. You really don’t understand me at all! Sometimes I just want to carry on with the everyday tasks”.
Rephrased using ‘I’ statements: ‘I know you care and don’t want me to overdo it. I’d really like to do some of the household chores sometimes, though. It helps me to get a sense of normality back. I’d like you to trust me to tell you when I feel tired and need to rest.’
Explain what you need
Tell your partner how they can support you. This includes paying attention to your emotional needs. For example, you may want your partner to give you the opportunity to talk about your anxieties. At other times, you may want time alone.
It is important to take time away from your illness doing enjoyable things together, such as a shared hobby. Some people have ‘non lymphoma days’, where they agree not talk about their lymphoma. Your partner might also help with practicalities such as preparing meals and doing household chores. Attending hospital appointments with you can be helpful, both practically and emotionally.
Consider sexual intimacy
Sexual difficulties and lack of desire or loss of libido are common when you have lymphoma. They can present 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 may cause temporary impotence in men. Sometimes your partner might worry that having sex can harm you.
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 in your relationship. Be open with your partner. Talk to them about how you feel in relation to sex.
Macmillan Cancer Support offer information about sex and cancer. You may also find it helpful to talk to your hospital specialist or GP. This might seem embarrassing to you, but doctors are used to such conversations and want to support you.
You might find it beneficial to talk with the help of a psychosexual counsellor, who specialises in relationship and sexual difficulties. You can find out more about psychosexual counselling on NHS Choices. Your doctor may be able to refer you to a psychosexual counsellor on the NHS.
There are other options although you will need to pay for sessions. Relate, for example, offers couples therapy. Both The College of Sexual and Relationship Therapists (COSRT) and the British Association for Counselling & Psychotherapy (BACP) have online search tools where you can look for a private therapist in your area.
It is very common to feel uncertain about how to talk to children about lymphoma. It is natural to want to ‘get it right’. You might worry that you may scare or upset them. You may also feel you have little emotional resource and energy to cope with their responses.
Research indicates that children cope better if they understand what is happening. Even very young children pick up on anxieties and frustrations within their home. This can be very troubling for them if they don’t know why these tensions are there.
Help your child understand the situation by being honest and using age-appropriate language. This encourages expression of fears and anxieties as opposed to making them feel they mustn’t talk about ‘it’ for fear of upsetting you. For children, trying to cope with difficult feelings alone can heighten their fear as they begin to imagine various scenarios, including the worst outcome. Talk about your lymphoma to help your child feel more secure and trusting of you.
Giving young children information little and often can be preferable to giving lots of information at once – they may not be able to process it all, which could overwhelm them. Let your child know that it is all right to come back and ask questions and talk to you as often as they want to. Reassure your children that there is nothing they have done that has caused your lymphoma. Tell them that they cannot catch lymphoma from you.
You know your child best; trust your intuition and be guided by how much or little he or she wants to know. In general, being as specific and honest as possible is helpful. You may find our storybook, Tom has lymphoma, useful in explaining lymphoma and its treatment to younger children.
It can be helpful to tell children how you are feeling (for example, that you are tired or in pain). Prepare them for changes such as hair loss as a side effect of treatment. Reassure them that their routines and activities will stay the same as much as possible, but that there may be changes to their day-to-day life. For example, there might be some days when a classmate’s parent collects them from school if you need to attend a hospital appointment. Let your children’s school know about the situation, so that they can offer support.
You may like to read Sue’s story, in which she talks about the impact of her husband’s lymphoma diagnosis and treatment on family life.
Who will be there?
Consider if someone else will be there when you talk to your child about your diagnosis and treatment, eg a partner, family member or friend. Some hospitals may have a suitable member of staff who could be with you, such as a nurse or social worker. You might prefer not to include anyone else in the conversation.
If you have more than one child, talking to them at the same time can help to create inclusivity. If you speak to children separately, one might worry that the other knows more than they do. You know your children best, so trust your instincts.
Where and when?
Choose a time when you’re feeling fairly calm and when you feel emotionally able to deal with questions. Give some thought to the conversation but try not to overthink it. Aiming for the perfect conversation will put unnecessary pressure on you.
The information will be a lot for children to take in. Revisit it from time to time to give them an opportunity to ask questions and talk about how they feel.
Macmillan Cancer Support also have advice on talking to children about cancer including how to tell them about your diagnosis, treatment and its side effects.
They also publish a booklet called Talking to children and teenagers when an adult has cancer, which you can download free of charge or order online.
Talking to children about lymphoma if your diagnosis is terminal is one the most difficult things you ever do. Macmillan Cancer Support and Winston’s Wish have collaborated to produce a booklet called Preparing a child for loss. It gives practical advice to guide you in these conversations.
The Marie Curie website also has information on talking to children about your illness.
People are often unsure how to react to the news about a cancer diagnosis in someone they know. Some people might withdraw. Others may have lots of questions. Responding to these can be tiring. You may find it helpful to ask someone to be a key contact. This person can pass information between you and groups of friends or colleagues. Another suggestion is to send a group email with your news and updates. This can save you from repeating similar conversations.
Lots of people want to help but do not know how – the situation is new for them, too. Offer guidance on how they can help. You could, for example, ask for help with:
- transport to and from hospital appointments
- housework, food shopping or preparing meals
- organising social activities for when you feel well enough.
Listening can also be deeply beneficial. You could tell friends and colleagues that you would appreciate being able to talk openly with them about how you feel. Reassure them they do not need to feel pressured to do or say ‘the right thing’ – conversation flows much more easily when people are not worrying.
Many people find it helps to speak to others who are affected by lymphoma. Even if another person’s experience is not exactly the same as yours, it can be a relief to speak with someone who has been through something similar.
Lymphoma Action runs a buddy scheme and may be able to put you in touch by telephone or email with someone in a situation similar to yours. You can also visit our online forums to get in touch with others affected by lymphoma. You might also like to post messages on our Facebook page.
You may prefer to meet others in person at our support groups. There are a number of support groups around the UK for people with lymphoma. You can use our online search tool to find your nearest group.
Further information and support
Cancer Research UK has information about sex and cancer if you are single or starting a new relationship.
Carers UK offers information, advice and support to anyone who is caring for someone who has an illness. They also run a helpline and online forums.
College of Sexual and Relationship Therapists (COSRT) is a national organisation that specialises in sexual and relationship issues. They have information about sex after a cancer diagnosis and an online directory of therapists.
Macmillan Cancer Support offers a range of information and resources, including videos and booklets, to help you in your relationships.
Relate offer counselling, support and information for all relationships, including family life.