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.
You might find it useful to look at our section on the emotional effects of cancer.
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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 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. 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.
We have more information and advice about talking about your cancer which you might find helpful.
You may also find our section on body image and cancer helpful.
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
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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.
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 (see next page).
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
feeling helpless or hopeless
feeling numb, overwhelmed or out of control
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 someone or sharing your experience
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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.
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 more information about local support groups which you might find helpful.
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
give advice based on your experience to other people.
Our online community is a social networking site where you can chat to people in our chat rooms, blog your journey, make friends and join support groups. You can share your own experiences and feelings, and get support from others.