The emotional impact of living with lymphoma

Living with and beyond lymphoma can bring many adjustments. This information outlines some of the feelings people often describe if they, or someone close to them, are diagnosed with lymphoma. However, each person has their own, individual experience of lymphoma.

We have separate information if you are caring for someone who has lymphoma. This includes information about taking care of yourself and getting emotional support.

On this page

Feelings after a lymphoma diagnosis

Coping with difficult feelings

Where can I get support with how I feel?

Finding a 'new normal'

Feelings after a lymphoma diagnosis

You’re likely to experience a mix of feelings and emotions after learning of a lymphoma diagnosis – there’s no typical way to feel. We offer a range of Helpline Services to support anyone affected by lymphoma, including family and friends of those diagnosed.

If you are the person with the diagnosis, an important part of the role of your medical team is to support your emotional wellbeing. 

It takes adjustment; however, most people adapt well to living with and beyond lymphoma. Over time, many people describe finding a ‘new normal’.

I have probably experienced every emotion relevant to a cancer diagnosis (except for depression) and I have watched my family and friends go through it all, too.

Debbie, diagnosed with follicular lymphoma

The feelings below cover some of the responses to a lymphoma diagnosis we hear about. You might not feel all of these, and they won’t necessarily be in a particular order or at set times. They might also come and go.

• shock and disbelief
• denial
• feeling scared and fearful
• anxiety
• helplessness and loss of control
• anger and irritability
• low mood and sense of loss
• guilt
• withdrawal or isolation
• questions about life or spiritual beliefs.

Feelings in relation to a lymphoma diagnosis are very individual; there is no one, or right way to feel. Shock, fear, anger and grief are only a few of the different emotions that come through on our Helpline; we’re here for anyone, however they’re feeling, and without judgement.

Lymphoma Action Helpline Team

Shock and disbelief

Shock is a common reaction to a lymphoma diagnosis. Some people say they feel numb or as though it isn’t real. It might take a while before you feel ready to even start to process the news.

If you are in shock or disbelief, you might not want to talk about the situation. It can be an added challenge if family and friends are asking lots of questions. You could explain that you need some time to process the information you’ve been given. You could also tell friends and family that we have information about lymphoma. Our Helpline Team is available to support them too.

Denial

Feeling overwhelmed can sometimes lead to denial. You might try to carry on with your day-to-day life as if nothing has changed. 

In the short term, denial can be a protector from the emotional pain of a difficult situation. It can give you time to process distressing information at a more manageable pace.

If denial goes on over time, however, it could stop you from:

• developing healthy ways of coping with difficult feelings
• being actively involved in making important decisions about your health care
• taking good care of your general health and wellbeing, including seeking medical advice when you need to.

Feeling scared and fearful

A lymphoma diagnosis is unfamiliar and affects both your physical and emotional wellbeing – a natural reaction to this is fear. Many people feel scared and struggle to listen to anything the doctor says after hearing ‘lymphoma’ or ‘cancer’.

When you are ready, finding out a bit about lymphoma might help to take away some of the power of the unknown. Your medical team can answer specific questions you have about your individual situation. Our Helpline Services Team is also here to support you. 

I had never heard about lymphoma before my diagnosis, so it was very new to me. My cancer nurse recommended Lymphoma Action, and said the charity gave lots of really useful information, including tips for coping with lymphoma. I found the stories shared by people who had experiences with lymphoma themselves to be the most helpful. It was nice to know I wasn’t alone with feeling very up and down, and questioning why this was happening to me.

Laura, diagnosed with Hodgkin lymphoma

High levels of anxiety

Heightened anxiety can feel very uncomfortable and overwhelming. You might experience anxiety as:

• a feeling of unease, worry or dread
• feeling more irritable
• difficulty concentrating
• difficulty sleeping
• muscle tightness (tension)
• a ‘racing’, fluttering or pounding heart (palpitations)
• dizziness
• quick breathing.

We often hear that people feel high levels of anxiety while waiting for the results of tests and scans, and before hospital appointments.

Active monitoring (watch and wait), where you don’t have treatment straightaway, can also increase anxiety levels. If you are the person who’s been diagnosed with lymphoma, ask your medical team to explain why they are recommending this approach. 

If you’re feeling very anxious, speak to member of your medical team for support to help you to manage it – if you have one, a clinical nurse specialist is often a good person to approach. 

If you are caring for someone who has lymphoma, ask your GP what support they can offer. We are also here to support you. 

I hadn’t heard of lymphoma before Roger was diagnosed. I ended up reading a lot of statistics and numbers. I think that just revs up the anxiety though because, ultimately, each case is very different.

Mimi, whose partner was diagnosed with diffuse large B-cell lymphoma

Helplessness and loss of control

A lymphoma diagnosis is a significant life change, over which you’ve had no control. Some people describe feeling passive in their lives, as though things are ‘happening to them’. People often want to find a reason for things, which can make lymphoma difficult to accept – most of the time, there is no known cause of lymphoma.

You might not fully understand the reasons for all the tests and scans you’re having. You might be unsure why a particular treatment plan is recommended. Getting the information and support you’d like can help you to regain a sense of control. 

Anger and irritability

You might feel angry about the disruption that lymphoma causes to your life and plans. Some people feel angry with the cancer itself or towards their medical team. 

People often question why lymphoma has happened to them or someone close to them. It can feel unfair and as though it doesn’t make sense. Some people have deep questions about life and its meaning (existential questions). Some people have questions related to their spiritual beliefs.

With all the feelings you are experiencing, it is also common to feel irritable with the people around you. You might resent that they can carry on with their lives while you have to make changes to yours. It can feel irritating to receive well-meant advice from family and friends. For example, people might tell you to ‘be positive’ and to ‘fight’ your illness, or to eat certain foods they think could help. 

Changes in mood can also be a side effect of steroid treatment. For some people, this includes feeling short-tempered and irritable.

If someone close to you has lymphoma, you might feel a sense of pressure to be positive for both of you. However, it’s only natural that there will be times when you don’t feel positive or motivated. You might also feel emotionally distant from people who encourage you to be optimistic. It can seem as though they don’t understand, which can feel isolating.

These challenges can put a strain on relationships with family and friends. We have separate information about the impact of lymphoma on relationships, and about communicating with the people around you.

Low mood and a sense of loss

Whether you, or someone close to you is the person with a lymphoma diagnosis, you might feel a sense of loss. You might feel sadness with the uncertainty about whether you can continue with your day-to-day life as you have until now, and the possibility of changing future plans. Memories and feelings about other losses you have had in your life could also be triggered.

It can bring great sadness, too, to know that family and friends are likely to be coping with challenging feelings. 

Guilt

Some people feel guilt after a lymphoma diagnosis. They wonder if they could have caused it or stopped it from happening. It’s human nature to look for an explanation. In most cases, however, the cause of lymphoma is not known.

Some people also question if earlier medical attention would have made a difference. The symptoms of lymphoma can seem like those of other, milder illnesses or conditions. Some people assume that they are related to other factors in their life – for example, assuming that tiredness and difficulty fighting off infections is because of a particularly busy time at work. Although lymphoma is often at an advanced stage at the point of diagnosis, there is often effective treatment.

I started to get unwell. I was getting colds that were just not shifting. I was also coughing a lot and pulling muscles. I have asthma and I wondered if I was having an allergic reaction to something. I had never heard of lymphoma before I was diagnosed.

Joel, diagnosed with Hodgkin lymphoma

Withdrawal or isolation

It can feel very lonely to be living through a difficult situation when others around you are not – you might feel that they don’t really understand. Some people pretend to feel OK even when they don’t really feel this way. 

The time after treatment can also bring mixed feelings. People might expect you to feel overjoyed once treatment is over, particularly if you are in remission. However, we often hear that people don’t share this feeling. For example, some people feel that it is an uncertain time, and that they feel unsettled by seeing less of the medical professionals they have been supported by. 

It’s understandable that you might want to be alone from time to time. However, healthy relationships with family and friends can be an important source of support. They can have a significant positive effect on your mood. In turn, this can motivate you to take good care of your general overall health and wellbeing. 

During times when you’d like to be on your own, you could politely let the people close to you know that this is the case. Being honest might help to prevent them from feeling hurt, or worrying that they have upset you. We have more tips about communicating with the people around you, including about times you don’t want to talk.

If you feel that you want to withdraw from others all or most of the time, this could be a sign of ongoing low mood and depression. If you think you might be experiencing depression, there is a range of support available – speak to your GP or your clinical nurse specialist for advice.

Questions about life or spiritual beliefs

Feeling that life has meaning is an important part of mental wellbeing. Research has found a link between people who feel that life is meaningful and satisfying, and those with lower levels of anxiety and depression. 

A lymphoma diagnosis can prompt deep questions about the purpose and meaning of life. This might include questions about spiritual or religious beliefs.

Positive changes

Over time, some people diagnosed with lymphoma shift their focus away from their cancer. They concentrate their attention more on other aspects of their life, such as family. In turn, this can have positive impacts on their emotional wellbeing. 

After seeing how things change from one moment to the next, I find it very important to be a little more aware of the good things in life. For example, I try to just be very thankful about having what I have, and things like just being out with a friend and sitting in the sun.

Mimi, whose partner was diagnosed with lymphoma 

Some people experience ‘post-traumatic growth’, where they feel that something significantly positive has come out of their experience. This might be described, for example, as:

• feeling more personal strength
• a greater appreciation of life
• being open to new possibilities
• re-thinking what the most important things in their life are
• closer relationships with others.

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Coping with difficult feelings

An important part of wellbeing is allowing yourself to feel your emotions. Although this can be difficult, it can help your short and longer-term wellbeing, and there is support available. 

In general, following a healthy lifestyle can help with your overall health and wellbeing. 

There are lots of things you could try that might help you to manage difficult feelings. We outline some of these below.

Self-help strategies

Different people find different strategies helpful. Examples include spending time in nature, doing something creative, or practising a meditation such as mindfulness or yoga.

Think about what you can and can’t control

A lymphoma diagnosis can bring a sense of lack of control. It can be helpful to think about what is realistically within your control, and what is beyond it. For example, while you cannot change the lymphoma diagnosis, you can control how you prepare for consultations with your medical team – for example, by thinking about the questions you’d like to ask.

Find out a bit about lymphoma

When you are ready, finding out a bit about lymphoma can help you to feel that you understand the situation more. Your medical team can answer questions specific to your situation. You might be interested in our suggested list of questions you might like to ask them about lymphoma.

You can also find lots of information and resources on our website. Our Helpline Team can also help you to find out about any lymphoma and offer emotional support.  

Getting the balance right for you

Although it can be helpful to understand a bit about your lymphoma and its treatment, having lots of information all at once can be overwhelming. Make sure that any information you read is from a reputable source. One way of recognising trustworthy information is to check whether the organisation producing it is an accredited Patient Information Forum (PIF) TICK member. This shows that they have been awarded with a health and care information quality mark by an independent organisation. 

If it feels daunting to find out about lymphoma, you could ask a family member or friend if they could help you by researching the things you’d like to know about lymphoma. They can then summarise this and tell you just the key points.

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Where can I get support with how I feel?

Your medical team should offer personalised support with all aspects of your physical and emotional wellbeing. This includes giving you information about other support services available to you.

From my experience, feelings and emotions can fluctuate. You might feel OK one moment, but then the next hour, day or week, you feel back to square one. I think this is all perfectly normal.

Pam, diagnosed with splenic marginal zone lymphoma 

We have a range of Helpline Services to support anyone diagnosed with lymphoma, their family and friends. This includes putting you in contact with others who have personal experience of lymphoma.

Counselling and other talking therapies

You might consider trying a talking therapy, such as counselling. For some people, counselling provides an opportunity to express the things they feel unable to with others.

There are lots of different types of counselling. There are also therapists who can work with you in ways that don’t necessarily use words as their main way of exploring feelings. Instead, you could express yourself creatively, for example, through art, dance or music.

Counselling aims to give you a safe and non-judgemental place to feel understood and to explore your feelings. It can help you to consider:

• your thoughts and feelings
• how lymphoma affects your life, for example your work, studies or relationships
• what is important in your life
• how you usually respond to people and things, relating this to your current situation
• what the people and things in your life mean to you
• your feelings of resilience and sense of ability to cope
• ideas and strategies to address challenges.

If you would like support in adjusting to living with and beyond lymphoma, speak to your GP or a member of your medical team. They might be able to refer you on the NHS, or they might know of other wellbeing services in your local area, including those that you can access by phone or videocall. You can also see our emotional wellbeing section of our useful organisations listing.

Macmillan Cancer Support has a free audiobook about the emotional effects of cancer – you can download it in sections or listen to the whole book.

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Finding a 'new normal'

It can be challenging to adjust to life with and beyond lymphoma. Some people feel a pressure to continue with their day-to-day routine in the same way as before their diagnosis. 

Remission can impact on mood too. I found this to be the case particularly in adjusting to having ongoing treatments, and needing to deal with side effects or consequences of previous ones. 

Chris, diagnosed with mantle cell lymphoma

Try to give yourself permission to make some changes. For example, you might need to make some short or longer-term changes to your day-to-day life. Many people describe finding a ‘new normal’ and adapt well to a different routine. 

You might be interested in our Live your Life peer-led self-management programme. This is designed for people who have just finished treatment or who are on active monitoring (watch and wait). A key aim is to help you adjust to life with and beyond lymphoma.

My experience of lymphoma has had both positives and negatives. I am far more aware of things in life, and it has made me slow down and focus on making life as positive as it can be.

Joel, diagnosed with Hodgkin lymphoma 

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