How lymphoedema can affect you emotionally

You may feel a range of emotions about lymphoedema. It changes your body and can affect your lifestyle. It can also be a reminder of your cancer experience. Many people experience different emotions, such as feeling:

  • self-consciousness
  • responsible
  • angry
  • low.

Talking about your feelings is not always easy. It can help to let your lymphoedema specialist know how you are feeling. They may be able to help you, and they can tell you about support groups in your area.

Talking to other people who have lymphoedema can be a great source of help. You can do this through support groups or online forums such as the Macmillan online community.

If you feel very sad or anxious a lot of the time and think you may be depressed, it is important to talk to your GP. They will be able to suggest treatments that may help.

Your feelings

You may feel a range of emotions about lymphoedema. Although it is not a life-threatening condition, it changes your body and affects your lifestyle in different ways. It can also be a reminder of your cancer experience. Any negative feelings often get easier to cope with as the lymphoedema improves and you get used to managing it.

Feeling self-conscious

You may feel self-conscious or embarrassed about the effects of lymphoedema on your body.

Although it can take time, it is usually possible to reduce lymphoedema. As this happens, you may become less self-conscious about it. Some people find wearing different types of clothing, such as looser styles, helps them cope with changes in their body.

It may be helpful to prepare a way of explaining lymphoedema to people who ask questions or make comments. It is your decision how much you want to say about your condition, or whether you say anything at all. Other people who have lymphoedema, or your lymphoedema specialist, may be able to help you with this. Some people find our Online Community a helpful way to find support from others in a similar situation.

We have more information about coping with changes to your body image.

Feeling responsible

Some people worry that there is something they could have done to prevent lymphoedema. The lymphoedema is a result of cancer treatment or of the cancer itself. We still do not know enough about why lymphoedema develops in certain people. It is important to remember it is not your fault. Lymphoedema can still develop in people who do everything they can to reduce their risk.

Feeling angry

It is natural to feel angry about having lymphoedema when you have already had to cope with cancer. It may have developed when you thought life was starting to get back to normal. You may feel angry about the extra time and effort to take care of yourself and manage lymphoedema. It can help to talk to others about how you feel.

Finding ways to help you relax and reduce stress can help with any anger you might feel. This can include:

  • talking about, or writing down, how you feel
  • gentle exercise
  • breathing or relaxation therapy
  • yoga or meditation.

As the lymphoedema reduces and you learn to manage it, you may feel more able to do things you enjoy. Or you may find new activities to replace the things that are now harder to do.

Feeling low

Lymphoedema is an ongoing problem, and at times you may feel low or depressed about your situation. Try to let family and friends know how you are feeling. This can help them support you.

Some people feel low because they do not have enough support. For some people, family and friends may live far away. It is normal to have times when you want to be left alone to cope with your feelings. But if you avoid people often, and feel anxious and sad for a long time, talk to your doctor or nurse.

Some of the emotional signs of depression can include:

  • feeling low in mood most, or all, of the time
  • having no interest in, or getting no enjoyment from, things you usually enjoy
  • feeling helpless or hopeless
  • feeling numb, overwhelmed or out of control
  • always worrying.

Talking to others or sharing your experience

Talking about your feelings may help reduce feelings of stress, anxiety and isolation. There are lots of different ways to communicate, and these can all help you feel less alone. Some people find joining a support group or our Online Community helpful. The nurses at your hospital can give you information about support groups in your area.

If you need more support, you can contact the Macmillan Support Line. You can talk to one of our cancer support specialists.

If you need more help

Talking about your feelings is not always easy. It is important to be kind to yourself. You should not feel guilty about needing extra help to deal with your emotions. These feelings can be very difficult to cope with, and sometimes people need more help. This happens to lots of people and does not mean you are not coping.

If you feel anxious, panicky or sad a lot of the time talk to your doctor or nurse. You should also talk to them if think you may be depressed. They can often refer you to a counsellor or psychologist for specialist help. Sometimes, a course of anti-depressant drugs can be helpful.

We have more information about the emotional effects of cancer. This includes the feelings you may have and suggestions for coping with them.

Support groups

Self-help or support groups offer a chance to talk to other people who may be in a similar situation. They may be facing the same challenges as you. Joining a group can be helpful if you live alone. Or they may be helpful if you do not feel able to talk about your feelings with people around you. Not everyone finds talking in a group easy. You can go along to see what a support group is like before you decide to get involved.

We have information about cancer support groups across the UK. Your lymphoedema specialist may also know about groups in your area.

Online support

Many people now get support through the internet. There are online support groups, social networking sites, forums, chat rooms and blogs for people affected by cancer. You can use these to:

  • meet and keep in touch with other people affected by cancer
  • chat in real time
  • share your experiences and feelings
  • ask questions
  • give advice based on your experience to other people.

Our Online Community is a social networking site. It lets you talk to people in our chat rooms, blog about your journey, make friendships and join support groups. You can share your own experiences and feelings, and get support from others.

It can help to stay positive and get out and about when you can - the best thing for me is company.