As many as 200 million people worldwide suffer from Lymphedema, but diagnosis can often leave patients feeling alone and stranded. If you love someone with Lymphedema (LE), there are a few regular habits you can establish to help them feel comfortable, understood, and loved.
LE is a dysfunction of the Lymphatic System – the body’s network of filters that helps the Circulatory System clear bacteria, infection, and by-products of blood circulation. Lymphedema can be primary (genetic) or secondary, as the result of trauma or damage to lymph nodes, often as a result of cancer treatment. Fluid back-up in the limbs makes patients especially susceptible to inflammation and swelling. It’s a disease without a cure that many health professionals know nothing about, and insurance often doesn’t cover.
When I was diagnosed just over a year ago, after trying everything to ease my pitted swollen feet for four years prior, it felt like a death sentence. The first step to get the swelling under control was complete decongestive therapy (CDT) – multilayer bandaging. Basically, a therapist wraps you in layers of gauze, liner socks, thick foam, and velcro, making it painful to bend your knees and ankles, and impossible to fit into just about any shoes. You wear these layered bandages 23 hours per day for at least two weeks (some people only ever wear these) to try to control the swelling. If you’re lucky, you graduate to heavy, scratchy stockings or sleeves that are as cozy as burlap – night and day, forever.
I know now it’s not a death sentence, but a test of strength and will, and a testament to our ability to survive and thrive. Lymphedema patients can do just about anything if we’re determined enough, and there are lots of us. But if you care about someone with Lymphedema, how are you supposed to help?
10 Habits for Loving Someone with Lymphedema
- Develop empathy. You probably won’t know what it’s like to walk a mile in our shoes, and we wouldn’t want you to. But everyone has a thing – or at least everyone over 30: swollen limbs, heart disease, GERD, impaired hearing. Lymphedema is worn on the literal and figurative sleeve and it’s easy to judge, but what are you struggling with that maybe we can’t see? Connect to your sense of empathy. Ask us how we feel? Take time to learn about LE, and ask questions.
- Be an advocate. It’s difficult to find a good medical team that understands Lymphedema. Help us, be there for us when we’re frustrated, and encourage us until we find the right team. Don’t let us settle. Be a bridge to others around us. Your family and friends won’t understand. Rather than making us tell our story over and over, speak up on our behalf.