March is Lymphedema Awareness Month, but raising awareness continues all year for the people affected by this condition. “There isn’t enough widespread understanding about lymphedema,” says athlete and Lympha Press therapy coordinator Lindsey Sosovec.
“Lymphedema looks different for everyone, but we all have to fight and advocate for ourselves,” she says. Adventure and athletics have defined Sosovec’s life. In her 20s, she traveled the world, played soccer professionally, and worked on a PhD in human biomechanics.
Lymphedema After Cancer
At 35, Lindsey received a cancer diagnosis and had a radical hysterectomy. Treatment also included the removal of several lymph nodes. Removing nodes can impact the flow of lymphatic fluid in the body, resulting in the fluid buildup and swelling typical of lymphedema.
While on a multi-country adventure two years after cancer, Sosovec was in Mexico canyoneering and noticed swelling in her right leg. Not knowing the cause of the swelling, she tried to elevate her leg as much as possible and continued to Indonesia.
There, the swelling became too dramatic to ignore. Sosovec cut the trip short and flew home, where she received a lymphedema diagnosis. “No one told me I was likely to get lymphedema after lymph node removal,” she says. “I didn’t even know what it was.”
Compression and Pumping Became Daily Activities
Committed to her health, Sosovec learned everything she could about lymphedema and created a daily treatment routine. “I have worn a compression garment on my leg every day since my diagnosis,” she says. “I also learned how to do manual lymphatic drainage (MLD) massage on myself.”
Two years after learning she had lymphedema, she got a Lympha Press pump, which helped tremendously with swelling. Pumping became part of her daily activities, too.
Adjusting to Life with Lymphedema
“I’ve had to modify what I do, and it hasn’t been an easy adjustment,” says Sosovec. “It’s hard to adjust to a different level of activity than I was used to.”
She also started accepting life with lymphedema. “I had to admit I have a disability. There are days I can go skiing, but other days, I can hardly walk,” she says. “But I’m an optimistic person, and my goal is for the progression of my condition to be almost unnoticeable.”
Pumping, or pneumatic compression therapy, was one of the biggest adjustments:
Pumping in Public
At first, Sosovec didn’t want to use her Lympha Press in front of anyone. “It was two years before I pumped in front of my roommate,” she says.
However, her roommate and friends were supportive, joining in with self-care activities when Sosovec brought out her pump. That led to her feeling bolder about using her Lympha Press.
Using a Lympha Press All Over the World
“I use my Lympha Press everywhere,” she says. “I’ve taken it with me to Burning Man, on a yacht, in an RV, and in a helicopter.”
Instead of feeling embarrassed, she decided, “I want to promote public acceptance, reduce apprehension, and make medical devices less intimidating to people.”
Being Active with Lymphedema
Sosovec continues to lead a very active life despite past knee injuries that sometimes cause challenging lymphedema flareups. She skis, surfs, hikes, and travels with lymphedema, but she acknowledges her body isn’t always ready to go as hard as she’d like.
“I have a surfing vacation coming up, but I’m struggling right now and not sure I’ll be able to surf,” she says. “That’s okay, though, because I know I will surf again at some point.”
We’re All Climbing Our Own Everest
“Everyone’s lymphedema is different,” says Sosovec. “To most people, I probably don’t look like I have a problem, but I deal with this every day.”
“With lymphedema, we’re all trying to climb our own Everest. Everyone’s dealing with something difficult, and everyone’s mountain looks different. I have a lot more empathy for other people now.”
She recommends these actions for people newly diagnosed with lymphedema:
Give Yourself Grace
“Giving yourself grace is so important,” she says. “That means not comparing yourself to others and not comparing yourself today to how you used to be.”
She always reminds herself that she has to evolve with her body. “You just have to know that it’s going to look different every day.”
Do What Works Best for You
“Most mornings, I wake up optimistic, but I do have days when I wake up feeling frustrated, angry, or isolated,” she says. That’s when she turns her focus to what she can do rather than dwell on the limitations of lymphedema.
For Sosovec, living well with lymphedema means:
- Being an advocate. “I’ve had to become an expert on this condition,” she says. “I enjoy supporting and inspiring others through my work and social media.”
- Eating an anti-inflammatory diet. “I enjoy eating healthy and always have, so that makes it easier.”
- Using compression. “I wear compression garments and pump every day.”
- Keeping moving. “I never sit for too long and try not to be in a car longer than an hour at a time.”
- Watching for signs of infection. “Infections are dangerous for people with lymphedema,” she says. “An infection can turn into cellulitis, which can become a staph infection.”
Reach Out and Find Your People
“There’s someone out there who’s similar to you,” says Sosovec. “I met a Paralympic skier with lymphedema in his leg, and he and I had so much in common. We shared ideas about ski boots, what kind of socks to wear, and how they work with compression garments.”
She says it is vital to find people in your life to relate to. She suggests listening to lymphedema speakers, connecting with others through social media, and attending Lympha Press patient roundtables.
Sosovec invites others with lymphedema to reach out to her on Instagram at @sosovecl or find her on Facebook by searching her name.
For answers to commonly asked questions, watch the video Lymphedema Diagnosis Explained: What You Need to Know.
As industry leaders, our goal at Lympha Press is to make life better for as many people as we can. We’re dedicated to providing comprehensive lymphedema education and equipment that helps people thrive while living with lymphedema.
Header image of Lindsey Sosovec paragliding provided by Lindsey Sosovec.
