While researching for my website, I have come across many inspiring and compelling stories about those living with lymphedema. I’d like to share some of these stories with you for encouragement and inspiration, and let you know that you are not alone. One such person is Alexa Ercolano. You may know Alexa through her social media and/or her blog, The Lymphie Life. If you are not familiar with her and her work, let me tell you a little bit about this inspiring young woman.
Alexa has had symptoms of lymphedema since birth. Although her parents took her to several specialists at the time, no one could explain why her leg was swollen. Like so many others who are not diagnosed or misdiagnosed, she was untreated for fifteen years.
When Alexa first heard the word lymphedema associated with her leg, she quickly began to research what that meant. As a teenage girl coming across pictures of advanced lymphedema and elephantiasis and the possibility of what her future held, it frightened her. This led to a ten year battle with anorexia – her belief being if she could control her weight, she could somehow control the size of her leg.
Even after she got a proper diagnosis and found a lymphedema therapist to treat her condition, she was still a teenage girl and rebelled against the requirements needed to control her lymphedema. “It was really tough for a really long time. I felt out of control of my body because of the lymphedema,” said Alexa. “The eating disorder was a way to kind of harness control, but in the wrong way and in that I lost control of everything.”
COMING TO TERMS WITH LYMPHEDEMA
Going through the recovery of her eating disorder helped Alexa come to terms with her lymphedema and the self care required to maintain her disease. Alexa realized that it is not a one and done kind of condition, but something that needs to be dealt with on a daily basis. Every day you need to get dressed, and every day you need to manage your lymphedema. She realized her health was in her own hands. It was her responsibility to manage her lymphedema and that no one could do it for her.
THRIVING WITH LYMPHEDEMA
When Alexa came to the conclusion that her health was in her control and that she ultimately was responsible for it, everything changed for the better. This motivation, along with creating her blog “The Lymphie Life,” helped her to come to terms with her condition.
Eventually she got to the point where the health of her leg became much more important to her than what others might think. She learned not just to manage her lymphedema, but to also manage the critics – both external and internal. Though hard fought she got to a place of self acceptance and self love.
One thing Alexa did was change the words she used to talk to herself and to talk about herself. “I don’t like to say that I’m suffering with lymphedema. I say I’m living with lymphedema, like I live with my twin sister,” she says. Changing your words can change your attitude about the way you think – not only the words you use to talk to yourself, but also the words you use to speak up for yourself and your needs. Although it may be challenging to ask for that seat on the bus to take care of your leg, sometimes your body’s needs have to come before your ego’s needs.
“You are your own best advocate when it comes to living with lymphedema, as far as your treatment and the medical attention you get. You have to speak up for yourself even if that’s to yourself,” said Alexa. “If you’re having days where you’re feeling like, ‘God I don’t want to wear this compression garment and I don’t want to do my pump,’ you’ve got to tell yourself, ‘hey, I’m running this show.’”
“You have the choice to do what you know will help and make you feel better or you can make the other choice. Even though the other choice is a little easier, it’s not always the right one and it’s tough. I think being accountable to oneself is one of the most important things one can do. We’re in charge of our own destiny when it comes to lymphedema. Just remind yourself how bad it feels when you go a whole day without wearing your compression. Why do that to yourself? You have to love yourself and love your limb. A happy lymphie limb is a happy lymphie.” Self care has to become a priority.
CONNECT WITH ALEXA AND THE LYMPHIE LIFE
Alexa has been running a blog post, The Lymphie Life, for ten years now. It is dedicated to uplift and elevate those living with lymphedema. Her website is full of information and resources about lymphedema from someone who’s lived with lymphedema all her life. It’s also a way to connect with others who are possibly going through the exact same things you are today. Reach out, you are not alone.
How do you “Stay Elevated”?