Really, I think Lymphedema is like dealing with any devastating news, especially a degenerative illness.
You go through the 7 stages of grief:
- shock and denial
- pain and guilt
- anger and bargaining
- the turn around
Make peace with it and strive for the acceptance phase.
Lymphedema is as damaging psychologically as it is physically. Or it can be. Sooner of later you realize you either let it take you or you fight back with all your prayers, faith, power, and might.
Let’s talk about coping with Lymphedema. Whether you are primary or secondary, the one thing that goes through everyone’s mind is “How am I going to live with this for the rest of my life?” You just did an internet search and are horrified.
What do you mean it’s incurable?
Why didn’t anybody tell me?
If you have had it for awhile, you think about the stares and the comments.
Common comments I have heard:
“Oh, you’re just lazy.” “You look normal to me.” “You’re faking it.” “You just need to lose weight.” “It’s all in your head.” “It’s just a little swelling, no big deal.” “Why are you wearing that stocking or sleeve in this heat?” “Does it hurt?” “Did you know your legs are swollen?” “God is punishing you for something.” “Why don’t you amputate your legs?”
Hmmm.. Really? I mean, seriously, really? This is just the tip of the iceberg. Opinions are like you know what, and everybody has one on how to solve your Lymphedema. You might lose friends and family over these comments. I say, “Good Riddance!”
I think it was partly due to these comments that I spent a lot of time dwelling in stages 1-4 of my grief process. Grief over what I was told I could no longer do. Grief over feeling disfigured. Losing things that I loved to do like travel and dance. Who wants to live with constraints? Nobody!
Toxicity has no place in your life. It is already pooling in your lymphatic system physically. Fatigue is a symptom of Lymphedema because our immune systems are constantly turned on and fighting the swelling. Why allow psychological toxicity in your life? It’s easier said than done, but hold your head high. You are part of a community that is 10 million people strong. They understand what you are going through, even if your neighbor doesn’t. Check that, even if your own family doesn’t.
The best advice I can give anyone newly diagnosed with Lymphedema is to make peace with it as soon as you can. Strive for the acceptance phase in the grief process. Sooner or later you realize you can either let it take you or you fight back with all your prayers, faith, power, and might.
Stay Lymphie Strong!