Joi-Louise is a fashion designer with experience in fashion PR and marketing. Her fashion brand Joi-Louise The Label is for curvy and plus-sized women. She was born with Lymphedema and is partnering with Juzo to help raise awareness of lymphedema and compression, while motivating others facing struggles similar to hers. Watch Joi-Louise’s YouTube video and follow her on Instagram @joi_louise.
When and how did you learn you had Lymphedema?
My mother developed Lymphedema when she was pregnant with me, and I have grown up watching her battle this condition. As a child, I had an ankle that was bigger than the other, but no one diagnosed me with Lymphedema. Things got more serious when I turned 18. My shoes wouldn’t stay snapped around my right ankle. I was devastated and cried for a while. How was I going to be able to express myself if I couldn't dress the way I wanted? What was this condition, and why wasn’t it going away? Years later, my primary physician diagnosed me with Lymphedema.
I think I developed a fearless and unapologetic attitude from my mom when it came to this condition. My mother always took care of her nails and her eyebrows were always groomed. She would bandage her leg every night. Sometimes, I would help her roll the bandages. She never complained, or felt sorry for herself. She owned it! Before I discovered that there was a physical therapy option in my area, my mother taught me all I needed to know about this condition – including that it couldn’t change who I am. That helped me to hold onto my love of fashion and self-expression. I own this condition; it doesn't own me. I can either choose to cover it in baggy sweatpants, or throw sequins on and keep struttin.’
Why do you want to help advocate for those with Lymphedema?
I have felt self-conscious about my condition – like everyone was looking at me wondering what was wrong with my leg. I want people to know that there is nothing to be ashamed of. There is no fault in this condition. Whenever I feel down about my ankle, I keep reminding myself that I have both of my legs, and that I can walk. Looking at the bright side is all too necessary. That is not always easy, but it is rewarding once you have the hang of it. Gratitude is a huge part of how I live with this condition. Through my social media content and my love for fashion, I will show others like me why they are fiercely stunning.
What should people understand about Lymphedema?
I am often surprised by how many people know someone that has Lymphedema. Whenever I talk about it on my Insta Stories, people always say “I know someone that has that condition.” I want them to know that we are here and that they shouldn’t feel sorry for us, but should encourage us in any way they can. Had any of my peers in college or high school known what to say to me when I was going through this, I think I would have found my gratitude and confidence much sooner. My first day at therapy, there was a 16-year-old boy in the bed next to me that was a stage or two higher than me. I wanted to say to him “this won’t define you, you decide who you are.” However, we aren’t allowed to interrupt other sessions while in therapy, and I regret not saying something to him. Who knows what it would have meant? For those who have been recently diagnosed, there is a way to live with this condition, embrace it and choose to take care of yourself. Mind and body. We’re in this together!
How do you stay positive?
I play dress up! I love to get dressed and transform myself. I grew up on Disney, so becoming that princess is such a joy to me! I choose to do things that will put me in a place of positivity. I also enjoy creating content. Whether it’s posting on Instagram, uploading a video on Youtube, or more recently being super silly on Tik Tok, being creative is my positive world. It’s time to celebrate life and encourage others to do the same.
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