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My mobility has always been a problem since childhood. I have severe hypermobility, osteoarthritis, chronic asthma, fibromyalgia and Lipoedema. My Lipoedema story started during lock down of 2020. My life was fading fast and I'd given up on living, to be completely honest, the pain I was in was so bad - I wanted to go to sleep and not wake up. I had gained so much weight that I was virtually immobile and was totally dependent on high strength pain medication - that barely took the edge off the pain. My weight was increasing rapidly and I had become so morbidly obese that I couldn't even carry out the basic of self care.
My first ‘lightbulb’ moment occurred while scrolling social media and accidentally clicked on a research article highlighting images of Lipoedema. I'd never heard of the condition and was was amazed that despite my education-based knowledge in health studies, I had still never come across Lipoedema. I subsequently took the bull by the horns and arranged a consultation with my GP, who diagnosed me with stage 3 Lipoedema. The worst part of the diagnosis was that I never received any advice or support relating to Lipoedema. I have been offered no medical support or intervention since diagnosis and continued to struggle with the concept that not one professional had picked up on me having Lipoedema over the years, despite having numerous referrals surrounding the pain in my legs.
My second ‘lightbulb’ moment was when I noticed a photo of my sisters’ swimming in the sea. They convinced me to get up and try, and with a lot of support, I took that first step and finally experienced a huge relief from the pain that had burdened me for so long. The only way I can describe the experience as I submerged in the sea is that I finally felt free. I was free from a big black fog that shadowed my thoughts constantly. The pain of the cold north UK sea was nothing compared to what had weighed upon me for so long, my negative state of well being drifted away and for the first time in over twenty years, positive thoughts started to creep in.
As a woman with Lipoedema, I have been told that I was just obese, and was put on so many strict diets with no results. Even though I would lose weight on the scales, from the waist down I just continued to look bigger. Living with Lipoedema is not just about the pain, it’s about the negative aspect that is inflicted upon self-love. I have despised being me and have been so physically ashamed of how I look for too long.
Swimming in the sea has been so incredibly inspiring, at first I struggled massively and changing swimsuits was horrendous. Gradually though, my mobility continued to improve, fast forward a few more months and there I was on my local beach in a bikini. To my surprise there were no awkward glares or stares, only compassion, understanding and sheer admiration. I will not pretend it’s all good though, as there are moments where I have been made to feel disgusted by others opinions. However, my personal persona and demeanour has become so much more positive, so now I don’t allow negativity to knock me down.
Wearing a bikini was a huge step for me, and a statement that Lipoedema no longer defines my mindset. When a photograph was taken of me in my bikini, my sister encouraged me to post it. At first, I thought the best thing to do would be to crop it from the waist down, but my sister urged me to be proud and so I posted the unedited image on social media. I prepared my self for trolls to hound and body shame me, what came next though was amazing - I received the total opposite and the positivity was incredible. Reading through the comments warmed the very heart of me. Having a background in health, I knew how much my post could empower positivity and promote wellness and change.
In October of 2020 I decided to raise awareness using my own journey to promote a positive mindset and acceptance to embrace who you are. I now only swim in a bikini or costume and share my journey world wide via social media. Open water swimming saved my life and helped me accept myself, Lipoedema and all. I’ve lost over 20 stone (127kg) by swimming in the sea. My legs have some improvement, however, I do still struggle with the pain and their appearance. The biggest change is that now I do not let it stop me from being free. I wear whatever I like now, not what others think I should. Covering my legs is not an option anymore, I am just me. My journey is still at the start as I intend to continue to improve. Treatment options are limited for me as I’m unable to afford surgery, and compression would prevent me from swimming in the sea and having relief from the pain.
The best guidance that I could offer anyone with Lipoedema is to embrace yourself, and I mean all of you. We all come in different shape and sizes, so be proud you are a Lipoedema warrior and don’t let others change your mindset. Cold water swimming is incredible for me, I know that it’s not for everyone though, so live your life doing everything you would choose to if you never had any condition. Pave through the pain, a little is more than doing nothing. That first step is not easy and will come slowly so please don’t let this bog you down. Patience is a virtue and change is definitely better than giving up. Life is too precious and too short to not give it your all. Thank you for reading my Lipoedema story.
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