This article was sent to me by Jennifer, she wanted to be able to share her anger and grief at the way Lymphoedema has changed her life. To let people know that we are just men and women trying to deal with a very difficult on going situation. That we are human in our sorrow and anger at what has happened after cancer treatment or because we are born with impaired lymphatics…. We were not prepared nor did we have any insight into what it meant to have Lymphoedema only fellow Lymphies understand that. We can stand like soldiers and be strong and positive but there are times that this is just not possible… There are days that we feel like Jennifer when she wrote this.. Thank you Jennifer for being so honest, I can relate to all you say and I am sure others will too.
Personal commentary – Living with lymphedema
No one really talks about how angry they feel about getting Lymphedema. Well I’m spitting mad.
First, I was incredulous about my condition. I watched as my leg swelled to twice normal size, I struggled with wearing shoes that fit, the edema in my ankle spilling out like dough. My toes ached from being squeezed.
I remember my intense feelings of resentment toward my physical therapist who explained to me what was happening to my leg. Yes, there was a therapy to treat the condition and no, there wasn’t a cure. You will have to live with this.
The first feeling of anger is due to the loss of control to what your body is doing. NO one told me about lymphedema. No doctor ever explained the consequences of my surgery. They let me find out for myself, years later what would happen. Now, thankfully there is a plethora of information on the internet.
I wasn’t really angry at my therapist. She did an amazing job. She was able to restore my leg to a near normal size after 3 weeks of intense therapy. My life as I knew it stopped then. I lived in South Carolina at the time; it was hot in the summer! I remember working in the garden planting and weeding and fixing up an older home on a busy corner in a small town. I was in a pair of shorts and a thick Juzo stocking on my leg. I felt that most intense internal shame looking at my new peach colored heavy knitted leg.
Sometimes, lying on the couch with my Lymphedema leg propped up on the cushion to ‘drain’ and rest it, I would have conversations with my alien appendage. “Why?” Why do you swell? When is it going to stop?” But it will never stop. And, you know that because you have been ‘educated’ about the condition. The therapist smiles and babbles on and tells you how great you’re doing. The therapist is a hero but I hate what she has to say.
…You can’t stay in the sun. You can’t take a hot bath, you can’t get a pedicure, watch out for insect bites, make sure you wear proper protection. Etc., etc….
My leg gets tired. I live in fear of making my swelling worse. If I sit too long, if I stand too long, I can feel the pressure growing in my ankles and knee-joint. I used to like to walk and jog and work-out. Now, it feels like whatever I do, I make it swell.
I have 3 dogs who want to be walked. So I take them. They don’t see the heavy stockinged leg woman; they see only the able-bodied person I once was. So I go. I walk more and more every day, encouraged.
I forget about my leg while I walk. The therapist encourages the exercise. “You want that muscle to contract and push the stagnant lymph out.” But I’ll never walk enough to clear it out completely.
I will speak only for myself, but I’d like to include others in general terms. Please forgive me if I’ve spoken out of turn, but we’ve been stoic about our condition. I just want to express that I am really pissed off about this.
I play a mind game where I go back to the day I had surgery. I try to re-play a different scenario for myself. It’s an endless loop as I know full well that I can’t reach back in time and re-write the ending. I can live with the actual surgery that was necessary to save my life. But I can’t live with lymphedema. Nope, I can’t. I often think that I would prefer to have a condition that had no outward visible signs. Wait a minute! Think about what you are saying. You shouldn’t have to make deals.
I keep on going because I have to, because I am so much more than the edema trapped in the tissues of my leg.
I go into surgery again for a lymph node transfer to try to repair the damage with the faith that I will come out alive and whole. Does anyone really express this fear? We must be brave soldiers, like my mother used to say to me when I was a kid.
There are risks….But I’m a good soldier.
I’m scared witless. Do you understand? Surgery is how I got into this nightmare. Now, surgery is going to correct it? I hope so. Must I sacrifice another part of me to restore myself? So, I’m angry. I put myself in the care of highly skilled surgeons who have taken an oath to do no harm. I believe them.
I know that I am not alone in experiencing the humiliation of having to expose a swollen, wrapped, and compressed in elastic limb in public. People make furtive glances, others stare. I feel like saying, “Did your momma never teach you not stare?” I say nothing and find a small cubby hole way deep inside of myself to hide. Other times I make snarky comments, “Oh, it’s an old injury from when I was a flying trapeze artist in the circus.”
This soldier has taken a major psychological hit. My wounds are visible to all. But I’m not a soldier, I’m a middle-aged woman who struggles through existence trying to compete like everyone else, but I must do it with an enlarged aching limb. I’m left to fight the insurance giants, fight for enough time with a physical therapist, and take a frightening step to have additional surgery to restore maybe 50% of what I had once before.
Someday, maybe 20 or 30 years from now, they will have a better solution for us. People will not have to be such courageous soldiers and bravely walk into the unknown. JEM