How lymphoedema can affect you emotionally

Coping with lymphoedema can be difficult because it changes the way your body looks and can have an impact on your lifestyle. You may find it emotionally challenging to accept these changes. Many people experience different feelings such as:

  • self-consciousness
  • guilt
  • anger
  • low mood.

It’s natural to have these emotions. Talking to your specialist, your friends and family or a counsellor can help. It’s important to explain how you feel to those around you. They’ll be able to provide you with the support you need.

Talking to others who have lymphoedema can also 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’s important to talk to your GP. They will be able to suggest treatments that may help.

Your feelings and lymphoedema

It’s understandable to have a range of emotions about lymphoedema. Although it’s not a life-threatening condition, it changes your body and affects your lifestyle in different ways. It can also be a constant reminder of your cancer experience. Don’t worry too much if you have negative feelings from time to time. These often get easier to cope with as the lymphoedema improves and you get used to managing it.

We have information about the emotional effects of cancer.

Feeling self-conscious

You may feel self-conscious or embarrassed about the effects of lymphoedema on your body and worry that people are looking at you. How you look doesn’t define who you are, and your family and friends will see you for who you are. Although it can take time, lymphoedema can be reduced and you’ll usually find that you become less self-conscious about it. Wearing looser clothes that are still fashionable may help you to cope with the changes to your body.

You might find it helpful to prepare a way of explaining lymphoedema to people who may ask questions or comment about it. Other people who have lymphoedema or your lymphoedema specialist may be able to help you with this. But it’s up to you how much you want to say about your condition.

Our information on talking about your cancer has useful suggestions to help you get the support you need. We also have information on body image and cancer.

Feeling responsible

Some people worry that there’s something they could have done to prevent lymphoedema. The lymphoedema is a result of your cancer treatment or of the cancer itself and you didn’t choose it. We still don’t know enough about the triggers for lymphoedema in certain people. It’s important to remember that it’s not your fault

Feeling angry and resentful

It’s natural to feel angry and resentful at having lymphoedema when you’ve already had cancer to cope with. It may have developed when you thought your life was starting to get back to normal. You may feel resentful about the extra effort and time in taking care of yourself and managing lymphoedema, when others are free to get on with their lives. Try not to bottle up your feelings – talk to the people close to you about how you feel. They can help by giving you the practical and emotional support you need.

As the lymphoedema reduces and you get used to managing it, you’ll usually find you feel more able to do the 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. You may find it helpful to talk to other people who have lymphoedema. The nurses at your hospital can give you information about support groups in your area. Many people find online forums a good place to get support. Try to let your family and friends know how you’re feeling so they can support you. Talking about your feelings isn’t always easy. It’s important to be kind to yourself and not feel guilty about needing extra help to deal with your emotions.

For some people, feelings of anxiety and sadness don’t improve. If you think you may be depressed, 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 enjoyment from, things you usually enjoy
  • feeling helpless or hopeless
  • feeling numb, overwhelmed or out of control
  • constantly worrying.

Your doctor can refer you to a counsellor or psychologist for specialist help and sometimes a course of antidepressant drugs can be helpful. There are other ways you can help yourself as well. Some people find using complementary therapies or taking regular exercise helpful. Talking to other people who are facing similar challenges by joining a support group or using social networking sites may also be helpful.

Talking to others or sharing your experience

Talking about your feelings can help reduce feelings of stress, anxiety and isolation. There are lots of different ways to communicate, and these can all help people to feel less alone.

Support groups

Self-help or support groups offer a chance to talk to other people who may be in a similar situation and facing the same challenges as you. Joining a group can be helpful if you live alone, or don’t feel able to talk about your feelings with people around you. Not everyone finds talking in a group easy, so it might not be for you. Try going along to see what the group is like before you decide.

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