The Psychological Effects of Lymphedema

Lymphedema can cause social inhibition, distress, depression, sexual dysfunction, physical disability, embarrassment, disfigurement, cosmetic problems and many life style changes for both men and women. The impact of lymphedema is not fully understood by health professionals and members of society. Patients struggle with their pain, loneliness, helplessness, humiliation, and anger each day. This anger must be addressed in a supportive environment such as a support group, or through psychotherapy. The successful use of these interventions can help improve the quality of life for people with lymphedema. They can turn the negatives into positives -- and help anyone suffering with lymphedema live a happier and more productive life.

If you have ever expressed any of these feelings, you may benefit from professional help, or by joining a support group.

"I felt sorrow at the enforced changes in my life."

"My lymphedema has not really altered my life activities, but it has made me self-conscious about the appearance of my arm. I wear a lot more long sleeved shirts."

"I am only 26 and am still active. It has really put a damper on things."

"I used to be a dancer, now I have difficulty lifting my leg in & out of a car."

"I felt helpless and not knowing what to do, no where to turn and out of control of my life, after cancer treatment. I was greatly relieved to know that I could control this disfiguring disorder."

"At first I did not realize that treatment was a life long commitment."

"Cancer itself is traumatic enough, but now I am reminded of it everyday because of the lymphedema. I've been hospitalized twice because of infection and I know any one of these infections could be deadly for me and I sometimes get depressed but go on."

"Yes I did and imagine I always will! There is almost mourning over the loss of being 'normal,' of having a huge amount of spontaneity lost, of having to constantly be aware of this problem."

"I have to get up earlier to get in the manual lymph drainage or the exercises for my leg done. It takes extra time to dress because I have to put on the compression garment and fit the foam pad behind my knee to eliminate binding. Sometimes it goes right on, but sometimes I have to pull it down and start over again. After work I get to spend half an hour re-rolling my bandages and another half hour bandaging my leg. This is after I drive home, change clothes and grab a bite to eat. If there is time and I don't fall asleep where I sit, I should do the massage (if I did exercises in the morning) or the exercises (if I did massage in the morning.) Thee are times when I wake up with my leg numb or a terrible pain in my foot so I have to pull off all the bandages and foam. I have a closet full of shoes I can't wear (especially the high heels) and a drawer full of jeans I can't wear because the right leg doesn't fit. Even on days I get a pair on, if I am on my feet for any length of time (like grocery shopping) before very long, the right leg is tight. I can't drive like I used to because my leg can't take being in that position for very long. It's a four hour drive to my mother's house and I haven't been up to see her since August because of the pain. It's very awkward to bandage every time I want to go someplace. You look like an easy victim in rest areas and shopping malls. Lymphedema has taken over my life in more ways than one."

"I felt frustration by the lack of information."

"The fact that some doctors didn't even recognize it as lymphedema was frustrating. When I was told there was no cure and that was the end of the discussion on the doctor's part. Little do the physicians realize how devastating it is to the patient to be told that there isn't a thing that can be done."

"Oh, do I ever AGREE! Actually, it's incredible. The ignorance is incredible to me."

"Every doctor I go to says that there is nothing they can do. I am trying to prevent the situation from getting worse when I get older."

"I can not believe that in this day and time that very few in the medical community know or lack of wanting to know about this condition. that is why I started a support group to help spread awareness to patients and medical community."

"While doctors seem to know the term lymphedema, they do not have an appreciation for the complications involved or the range of treatment options. I was told by a vascular specialist that I had lymphedema (I already knew that) and that while it was 'inconvenient' I should just get used to it. Also that it is in no way disabling or painful, just a problem with vanity."

"Physicians need to be better educated and need to talk to patient BEFORE the condition appears. If anyone mentioned it to me I sure missed the discussion."