Loving Someone With Lymphedema

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

1. 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.
2. 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.
3. Be patient with pain and fussiness. Part of living with Lymphedema is learning to be uncomfortable most of the time – fabric pooling behind our needs, stockings bunching around our ankles, elastic chaffing our pits, layers upon layers on sweltering days. Being uncomfortable all the time has a cumulative effect, and the end of the day, it can make a person downright crabby (or a raging expletive).
4. Be aware of limitations. Even LE patients with a can-do attitude can get tired and swollen. We all have triggers that can give us swelling flare-ups: long airplane flights, excessive amounts of exercise, poorly-fitting compression garments, alcohol consumption, and more. I went to visit my friend in Germany and we walked a lot, just as we’d always done. But I told her, with LE, I felt like I was wearing heavy firefighter turnouts. By the end of the trip, I felt like if I climbed one more staircase, I would die. Even when we don’t know our own limitations, help us recognize them and be patient when we hit a wall.
5. Help them with comfort. Even when our swelling is under control and life is fine, after a long day or even first thing in the morning, many of us just ache. All the fluid stuck in our joints can make us feel slow, lethargic, and heavy. Bring us a pillow to prop up our feet or arms, give a light massage to help the lymph move and swelling subside, and just be nice.
6. Create safe spaces. Certain extreme activities can cause pain and flare-ups, like extreme heat or inactivity. Help you LE loved one avoid unpleasant situations. Sitting poolside, saunas and hot tubs, cramped theater seats where you cant stretch your legs, events where sitting is not an option, and other extreme situations can make us unhappy. Help us find refuge, better options, or excuses to pleasantly decline.
7. Know we’re not overreacting. Until diagnosis, I enjoyed the heat, shrugged off injury, and thought I was tough. Now, the heat is often too much outside on a warm day, in a stuffy office, or under the covers at night. Any cut or nick that gets infected, no matter the proximity to our lymphie limb, can turn into cellulitis, a bacterial infection that can easily become systemic. Even a bump on the affected limb is unbelievably painful. I don’t know what it’s like when you boys get kicked in the family jewels, but I imagine getting kicked in the LE is similar. It is completely debilitating and shoots through you.
8. Give the gift of time. Self-care is extremely important for LE patients, because often it’s the small things we do that promote our overall health and prevent flare-ups. Life gets busy, but you can help us make time for therapy and massage, time to put on our compression stockings (a daily activity but no small feat), time for exercise because moving our bodies circulates the lymph, decreases swelling, and helps us control our weight.
9. Sometimes you can’t help – accept it. No matter how wonderfully compassionate you are, there will be times you just can’t help. Living with LE is a unique challenge that those of us who have it can understand, but many others can’t. There are communities online and support groups through treatment centers. Allow your loved one the space to form other supportive relationships.
10. Be unconditional. A Lymphedema diagnosis can deliver a critical hit to self-esteem and confidence. It’s tied to weight gain, body image issues, and feeling foreign in your own body. Having to avoid certain situations, swelling, donning compression, and dressing differently can cause isolation. Be there for your LE-affected loved one. Rather than, “I love you even with Lymphedema,” try, “I love you for you, with Lymphedema or without.” For bonus points, say, “You’re beautiful inside and out but seeing you with Lymphedema has shown me your strength and courage, and you amaze me.”

March 6 is World Lymphedema Day. Show your support by signing the petition to the World Health Organization asking that Lymphedema: Awareness and Cures be the 2019 global health challenge initiative.