Meagan Barnard kept her lymphedema a secret for years

By Gabrielle Olya
Updated February 10, 2016 10:20 AM
Credit: Grinkie Photography, LLC

At the age of 15, Meagan Barnard got the devastating news that she had lymphedema, a rare, incurable disease that caused extreme swelling in her right leg due to damaged lymph nodes.

“Being diagnosed with lymphedema at 15 was extremely hard for me,” Barnard, now 24, tells PEOPLE. “I was at an age where all anyone wants is to fit in. For a very long time, my condition made me feel like I was less of a person, that I wasn’t normal like the other students my age. I felt like I belonged in the circus for the way that I looked.”

Lymphedema not only affected Barnard’s self-esteem, but it impacted her ability to do the things that she loved.

“Prior to having lymphedema, I was a baton twirler, dancer and basketball player,” she says. “I enjoyed being in the spotlight and performing. Lymphedema took that away from me.”

Taking care of her leg is something that requires her constant attention on a daily basis. Barnard wears a compression garment while at work as an administrative assistant, and then uses a pump when she gets home to loosen and move the fluid in her leg. She then puts a compression garment back on, and wraps her legs in sheets of foam at night.

“Managing my condition and taking proper care is required 24 hours per day,” says Barnard. “Depending on the type of day I am having and how swollen my leg is, my activity is limited. Most days, light exercise and walking are the most that I can do.”

Barnard said she was teased throughout high school for her condition, so when she moved from her hometown of Superior, Wisconsin, to Minneapolis three years ago, she decided to keep her lymphedema a secret.

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“I was afraid to go public for a long time, because I felt like people wouldn’t want to be in my life if they knew that I had lymphedema,” she explains. “I fought hard to keep it a secret because I didn’t want anyone to judge me for something that was beyond my control.”

This past summer, Barnard came across a quote that inspired her to share her personal story and struggle.

“In July, I read a quote that said, ‘The world changes in direct proportion to the number of people willing to be honest about their lives,’ ” says Barnard. “I realized that by hiding my lymphedema, I am not benefiting myself or anyone else that is dealing with this condition. I’d like to think that being open and honest about who I am will make a difference to someone with lymphedema or any physical ailment.”

Revealing her lymphedema has given Barnard a new sense of freedom.

“I feel that by opening up about my condition, I am finally able to express my true self,” she says. “I have dealt with the depression, physical exhaustion and self-doubt that came from having lymphedema for the past decade, and I don’t want to go through that for the next one.”

Now, Barnard is raising funds for a series of surgeries that she hopes will alleviate her lymphedema, and change her life for the better. She will need a liposuction procedure, a lymph node transfer and a lymphaticovenous anastomosis procedure (to help drain the lymphatic fluids properly) – costing a total of $44,000 – to correct the swelling in her leg.

“After surgery, the hopes for my life are endless,” says Barnard. “Having this surgery would give me the opportunity to dance again, play basketball without being in pain, and even just the ability to wear a pair of boots to endure the cold winters in Minnesota. Having surgery to correct my lymphedema will give me a whole new life.”