Beauty Is The Beast
From a young age, we learn that “Beauty is pain”! Through many different sources, children adopt a false truth of what the standard of beauty is and learn that it is often not set by them. Evidently, some people buy into this while others don't, causing them to either chase what is often not attainable, or spend an insatiable amount of time redefining what beauty means for them.
Those of us who manage to choose the latter have victories where we attain titles such as fashionistas, style bosses, and/or gain the distinction of being uber-stylish. But, what if you’re fat? Silence. A big pause. Even when genetics is on your side, affording you glowing skin; healthy hair; sparkling eyes; pearly whites that make a smile mesmerizing; and a heart of gold, somehow achieving a standard of beauty that makes the masses less uncomfortable with you can become a mission impossible.
Depending on the culture, when you’re considered fat you learn quickly to cover up or show just enough skin to not offend anyone. Some of us, make it out of the confines that this mentality has, but not without scars! Because when you enjoy taking pride in how you look, but feel trapped in a body that repeatedly defies everything you do to look healthy, the quest for beauty takes on a life of its own, and inevitably beauty becomes the beast! Immediately, the world makes you feel that if you look fat, you must be contributing negatively to this outcome. After my cousin, Elise Sasso, shared her story with an incredible level of courage and transparency, I was able to gain awareness about two medical conditions that leave those suffering with lipo-lymphedema feeling fat, looking obese, and at a physical disadvantage in many aspects of life.
In an effort to bring further awareness about the impact of these two medical conditions, I interviewed the extraordinary Elise Sasso, who is also the creator of Beauty Is The Beast.
What is Beauty Is The Beast and why did you create it?
Beauty Is The Beast is a platform I created to build a support system to enhance the value of the lives of those affected by lipoedema and lymphedema through advocacy, motivational speaking, and promoting awareness.
Please describe both conditions that you are diagnosed with?
lipoedema a painful, chronic condition that causes an abnormal accumulation of fat in specific areas of the body. This fat is accompanied by fluid swelling (lymphedema) and other changes. In some cases, like myself, when you have both it's then called lipo-lymphedema.
What were the symptoms that you had which led to being diagnosed with both conditions?
My symptoms for the lipo-lymphedema didn't become noticeable until after each of my pregnancies. My symptoms included: disproportionately large lower half and column-like legs; bruises on my legs; swelling in legs and feet; tenderness in the legs; and biggest of them all, having no ankles.
How old were you when you got diagnosed with lipo-lymphedema?
I was in my late 20s when I was properly diagnosed (2010). However, My journey with this chronic condition became slightly noticeable in my early adolescent years, where my lower extremities were always much larger than the rest of my body (specifically my calves and ankles). After having children, my weight increased drastically with each one; at the age of 23 I weighed a whopping 410 lbs. Even at my heaviest, I remained active and had a notable social life. At that time, I even worked full-time during the day and attended school in the evening all while caring for my family. Having swollen feet and ankles was my norm... I rarely complained or noticed unless it was just completely unbearable, and even then, I would just take something for the pain and crawl into bed. This quickly came to an end after my second visit to the ER for cellulitis in both legs, which started a series of events that led me to a doctor who referred me to a specialist off-island. At THAT visit, and for the first time in my life I heard the terms “lip(o)dema and lymphedema in reference to MY LEGS!! Since then, I have been on a medical roller coaster with no end in sight.
Is lipo-lymphedema hereditary? If so, are you aware of any other family members who suffer or have suffered with both conditions?
Yes, this condition is hereditary. And based on my knowledge and personal experiences with this condition, I am very positive that I inherited it from my mother who is no longer with us.
What is the hardest part about living with lipo-lymphedema?
The hardest part about living with lipo-lymphedema is not knowing what's next. Over the years, I have gained the strength and courage to accept my condition, With that acceptance, I was able to cultivate “Beauty is the Beast”.
There’s no doubt that you are an EXTRAordinary individual! How do you maintain being EXTRAordinary despite the challenges that you face daily?
Through prayer, strong faith, and love of family (my children). I also make time to be creative. Since I enjoy doing hair and makeup, they’ve become an outlet for me to focus my time and energy. Being creative keeps my mind active and I’m also able to use my talents to bless others.
Whenever we are faced with challenges, we get to learn more about who we are deep down in our core. What is the most important thing that you have learned on this journey?
The most important thing that I have learned from this is to not be judgmental. Ask questions and never assume.
What advice can you give to someone who may be newly diagnosed with either health condition?
I never give advice. I only share experiences, and from my experience with having lipo-lymphedema, I would tell anyone to enjoy your days and live life to the fullest: Do not allow this dreadful condition to set boundaries for you!
Outside of sharing your story, how else can we support your mission?
Continuous sharing is always necessary! This can help expose me to medical officials that specialize in my condition. Donations and/or sponsorship towards my brand and educational experiences is definitely needed and much appreciated. This help allows me to attend seminars for education, networking and motivational speaking. It is my goal to deliver as much information and motivation to any and everyone who I come in contact with.
After learning more about Elise’s journey and her amazing spirit, I hope that you are encouraged to follow Elise on all social media platforms to learn more about lipo-lymphedema and her journey. Go be inspired by the way her extraordinary spirit teaches us that we can define beauty and learn to love ourselves despite our physical appearance! Many of us have a difficult time learning to love the healthy body that we were blessed with while Elise is challenged everyday to love the body that lipo-lymphedema is trying to conquer. Her strength and will serves as an example that we can find purpose in our imperfections if we choose to.
With this in mind, the next time you assume that someone is “just” fat, consider that they may be suffering from one or both of these conditions. Ultimately, offering encouragement rather than judgement is always the best option. Continue the conversation on our EIMO Facebook Page.
Elise R. Sasso was born and raised on the beautiful island of St. Thomas in the United States Virgin Islands and now lives in Atlanta, GA with her fiancé and three beautiful children. She created Beauty Is The Beast to build a support system that enhances the value of the lives of those affected by lip(o)edema and lymphedema through advocacy, motivational speaking and awareness.