Emotional Effects

Lymphedema can affect your self-image, interfere with your routine activities and what clothes you can wear, and remind you of the disease you thought you'd overcome. Your arm may feel heavy as lead, an appendage that is somehow "you" but "not you."

Your arm may also ache, feel tired or uncomfortable, or feel tight or painful. It may look swollen and unattractive. Strangers may ask you why your arm or hand is swollen, or why you're wearing a compression sleeve or bandages. Adding insult to injury is the continuous medical care and expense of treating this unpleasant condition.

Most cases of lymphedema aren't disabling or terribly uncomfortable. But once you do have an episode, the condition tends to persist or recur, varying in degree. The lymphedema may go away on its own, or it may clear up only if the cause is treatable (and treated quickly).

Episodes may last for days or weeks. If your swelling lasts for months, it's likely to be permanent, but remember that even the most severe cases can be substantially improved with ongoing treatment. Severe cases of lymphedema can cause thickening of the skin, stiffness and hardness of the arm and hand, and leakage of fluid from minor injuries. Fortunately, such severe cases are unusual.

People have different emotional responses to developing lymphedema, and all of them are perfectly normal. You might be angry that you weren't adequately warned about the possibility of developing lymphedema.

Even if you were warned, you might still feel angry because lymphedema is a chronic condition that you will need to manage in some way for the rest of your life. It's common to be frustrated with treatment, since it can require a large commitment of time, effort, and money. Other emotional responses include depression and feelings of helplessness.

Whatever your feelings about lymphedema, it's important to talk about them with friends, family, and health professionals. It can help to know that you have choices about how to manage your lymphedema. An occupational or physical therapist can explain your treatment options and help you decide which is best for you. It takes a lot of patience, and trial and error. Not every treatment option works for every person.