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
  • a low mood.

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

Talking to other people 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

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. 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 and worry that people are looking at you.

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 may help you to cope with the changes in your body.

You might find it helpful to prepare a way of explaining lymphoedema to people who may ask questions or comment about it. But it’s up to you how much you want to say about your condition or whether you want to 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’s something they could have done to prevent lymphoedema. The lymphoedema is a result of your cancer treatment or of the cancer itself. 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 and that lymphoedema can still develop in people who do everything they can to reduce their risk.


Feeling angry

It’s natural to feel angry about 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 angry 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.

Finding ways to help you relax and reduce stress can help with anger. 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 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. Try to let any family and friends know how you’re feeling so they can support you.

Some people feel low because they don’t have enough support. For some, family and friends may live far away. It’s normal to have times when you want to be left alone to sort out your feelings. But if you find you’re avoiding people a lot of the time and feelings of anxiety and sadness don’t improve then try to 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.

You may find it helpful to talk to other people who have lymphoedema. It 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. Some people find joining a support group or online community helpful. The nurses at your hospital can give you information about support groups in your area.


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.

If you need more help

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. These feelings can be very difficult to cope with and sometimes people need more help. This happens to lots of people and doesn't mean you're not coping.

If you feel anxious, panicky or sad a lot of the time, or think you may be depressed, talk to your doctor or nurse. They can refer you to a counsellor or psychologist for specialist help and 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 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.

We have information about cancer support groups across the UK.

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 where you can 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.