A woman who was diagnosed with lymphedema in her legs when she was just 12 years old says she spent decades hiding away from people – while undergoing more than 10 surgeries to try and reduce the swelling in her legs.
Monique Samuels, 35, from Atlanta, Georgia was diagnosed with lymphedema, also known as lymphatic obstruction, as a child; the condition causes excess fluid to collect in tissues, prompting swelling and edema in the legs.
It also causes the professional organizer and master’s student pain in her joints.
Proud: Monique Samuels, 35, was diagnosed with lymphedema – which causes severe swelling in the legs – at age 12, and has only recently found the confidence to bare her limbs in public
Agony: The Atlanta native discovered she had the condition when she sprained her ankle as a tween, and from there it continued to become more severe
Difficult: Monique says she spent years isolating herself from the world for fear of what people might say about her appearance
As a consequence, Monique has undergone numerous surgeries to help improve her condition, as well as getting manual lymph drainage therapy every year to help reduce the size of her legs.
Sadly, there is no cure for her lymphedema, meaning that Monique will have to live with the condition for the rest of her life.
For years, Monique isolated herself from others to avoid stares and comments, feeling self-conscious about her appearance.
‘When I was 12, I sprained my ankle, and shortly after, my right foot and leg started to swell up,’ Monique told Jam Press.
‘After going to several hospitals, I was referred to Lerner Lymphedema Center by an ER resident and that is where I was diagnosed – after about six months of hospital stays, MRI scans, blood tests and ultrasounds.
‘I was very self-conscious about my appearance once the condition developed… no one was ever unkind to my face but I would hear things from others or just stares from people in public.
‘I used to stay away from going out or doing certain things to avoid stares or feeling like I was dependent on others for help, when my legs were at their biggest.
‘A lot of the time, I had to roll my legs in wraps and it just took away from any fun I wanted to have.
Throwback: Before being diagnosed with the condition, Monique was a happy and confident little girl, however after she began developing lymphedema that all changed
Fear: ‘I used to stay away from going out or doing certain things to avoid stares,’ Monique (pictured before her lymphedema diagnosis) said
Symptoms: Initially, Monique (pictured left at age 17 and right at age 18) only experienced minor swelling, however her legs continued to grow over the years
‘I let the condition control my life and my decisions.
‘I used to base all my life choices on how it would affect my legs or limit myself because of it.’
The lymphedema particularly affected Monique when she was a teenager, as she stopped participating in sports like track, field, and swimming as she felt insecure about her body.
The rare condition also caused frequent cellulitis, a potentially serious bacterial skin infection that causes the skin to become swollen and red.
As a result, Monique was often sick, sometimes to the point of being hospitalized.
However, she says the hardest part of her condition was the constant self-imposed isolation.
After years of suffering alone, Monique decided that enough was enough – and got to work improving her self-confidence.
She said: ‘I was just tired of being sick and tired.
‘It took time but I was happy to push through that thought process by doing life coaching.
‘I used to always get comments from people saying that I was pretty but my legs were so big, and it used to bother me when I was younger but now I know I’m beautiful because of my legs.
Painful: Monique’s condition caused a bacterial infection called cellulitis, which can be deadly, and she regularly had to seek hospital treatment for it, and have her legs bandaged up
Difficulty: ‘A lot of the time, I had to roll my legs in wraps and it just took away from any fun I wanted to have,’ she explained
Proud: Now, Monique says she refuses to be limited by her condition – and she even candidly documents her struggle with lymphedema on Instagram and YouTube
‘There is so much more to me than my condition, I’m proud of who I am and who I am becoming.’
Monique even started documenting her life with lymphedema on Instagram and has received lots of support from her followers.
She added: ‘There are so many supportive people out there.
‘It always warms my heart to read my comments, there are millions of people like me out there and even if their condition is not the same, they too can relate to hiding who you are and everyday struggles.
‘I used to think the only people with lymphedema were old white women, because that is all I saw on manuals, brochures and videos.
‘Then, when social media grew and hashtags became a thing; I saw so many people living with it that it made me feel a part of a larger community of men and women, young and old, of all races and backgrounds.
‘You have the power to live the life you want, we are all a choice away from something different, so if you want something else, choose that! Be brave.’
Monique also runs a YouTube page called Chronicallymoni, where she regularly shares details about her life and surgery updates.