My name is Sarah Jouanny and I am the creator of MyLymph. In this editor’s note, I share with you how our positive people project came to life, #ChronicallyMotivated.
My personal journey with Lymphedema (LE) started in 2013 during my first pregnancy. At three months pregnant, my leg started swelling and doctors couldn’t tell me why. Like many people who first encounter LE, I was misdiagnosed and given little support from my local medical providers. They simply didn’t know anything about the condition or how they could assist me. I was told that there was nothing I could do except wear compression garments and have manual lymphatic drainage! This seemed outrageous to me- no solutions?! Seriously?! Without anyone to ask for help, or knowing where to turn to get proper care; I started to feel very isolated and helpless.
It was during one of my lowest periods that I decided to search on Instagram the hashtag #lymphedema. To my surprise there were a small number of people publicly sharing their LE journeys. It was a moment of pure relief to finally find other people who had the same problem! Until this point in time, I genuinely thought I was the only person my age who had Lymphedema. Being able to connect with others, to learn from their experiences, to be guided and supported in ways that not even my doctor was capable of doing was just priceless.
Connecting with other ‘lymphies’ allowed me to learn about custom compression, surgery, bandaging, lifestyle hacks and tips and tricks to manage the swelling. By talking, problem solving, ranting (!), listening and sharing within a patient community, I was able to draw on a bank of knowledge to manage my Lymphedema better. Without this online family, I would have been completely lost and clueless!
As more and more lymphies joined the Instagram movement, I noticed two major trends emerging in the community. Firstly, there was an overwhelming appreciation for finding fellow patients. Realising that we were not alone mattered. I saw a shift in mentality emerging amongst people. Many (including myself) would arrive in a depressed manner but as time went on and more dialogue was shared, attitudes started changing. Many people were sharing how they lived their lives with Lymphedema and not against it. Professional athletes, dancers, lawyers, moms and dads, triathletes, doctors and body builders- all these people had LE and were actually kicking butt in life! Connecting with these people made us all think, ‘Hey! Maybe I can kick butt too!’
Secondly, there was a huge resentment and dismay for the lack of information and support from the medical community. Why couldn’t our doctors tell us the things we were discovering online? Why did we have to search so hard for information about Lymphedema? Subsequently, this dismay helped create a strong appreciation for the support and information that was being offered by regular folk all around the world living with LE.
People power: Changing the way we live with Lymphedema
Chronically Motivated was born from the realisation that there was an urgent need to provide the Lymphedema community with an online space, that would drastically evolve our current ways of thinking and living with the condition. The secret to this was people power.
The literature on Lymphedema labels it as a condition that is restrictive, hopeless and limiting. These ideas are embedded in the minds of caregivers, doctors, our friends and family who don’t understand- and even in the minds of us who live with this condition. The problem is, however, a lot of us don’t feel like this! – despite how we have been conditioned to believe we should feel.
In order to break this negative mental cycle and change perceptions of Lymphedema, I decided that people needed to see more positive examples of living with the condition. Examples that we could all relate to- men, women, children, primary and secondary lymphedema’s, from all walks of life! We needed a platform to share our stories and give real voices and faces to LE.
Empowering each other through shared experiences
Sharing our stories is empowering. It gives power to the people who are reading as they are motivated to follow the same example. It also gives power to the person who is sharing- we want to be heard, we want to share our struggles and our victories and how we have come to this point in our lives where we live harmoniously with Lymphedema. It shifts the focus from our own struggle and we become part of other people’s support system.
Ultimately, through being a positive example, we inspire others to start thinking and living the same way.
Rome wasn’t built in a day!
The amount of positive feedback we have received for the #ChronicallyMotivated project has been nothing short of incredible and we will continue to share stories, inspire and motivate everyone to live better lives with Lymphedema.
Chronically Motivated a way of existing. It is a way of thinking, feeling and acting. It is something we can all strive to be!