June is Lipoedema awareness month and at Murawin, as a female owned and led consultancy, we want to join the conversation about this condition that affects 11% of women worldwide.
Lipoedema is a chronic, painful, loose connective tissue disorder, occurring almost exclusively in women. It is characterised by disregulated and disproportionate fat growth caused by lymphatic fluid leaking into the healthy fat cells, making them toxic. It is most commonly found in the legs and arms, and less commonly in other areas of the body. Lipoedema is usually exacerbated during times of hormonal change and is resistant to conventional lifestyle modifications. It is progressive and incurable, and when undiagnosed, can also lead to Lymphodema. However, there are management strategies that can reduce symptoms, including conservative measures and in some cases, surgery. (Lipoedema Australia: https://www.lipoedema.org.au/ )
Not only is Lipoedema affecting a large percentage of women, but it is also not widely known about and is not covered by Medicare, which means the management of this condition comes at great cost to those living with it. For some, that means going without treatment, surgeries or other forms of pain management entirely.
Murawin is actively invested in spreading awareness of Lipoedema because one of our valued team members lives with the condition and is a constant ray of sunshine, positivity and joy within our team despite the ongoing challenges she faces.
So as part of Lipoedema Awareness Month we sat down with her to speak about her experiences with the condition, how she manages it and how she remains so resilient, proactive, and positive.
“Whenever I speak from joy or from truth, I always cry, it’s just who I am. But it’s not from sadness, it’s because it’s my truth and this is what happens when I say it.”
“Talking about this is one of those things I have that constant dichotomy about but I want to bring awareness to Lipoedema because people don’t know about it, and it’s debilitating…”
“It is a massive marathon. What I deal with.”
“There isn’t an end game, it will just continue to progress despite all the things I do and will continue to do. It’s a serious medical condition that needs serious management that I must commit to completely. I’ve had four surgeries in the last two years, and I’ve worn medical compressions all day for the last year. You need to always be on a particular anti-inflammation diet because it’s an inflammatory disorder, so you have to have no sugar, no carbs… no flavour (laughs).”
“I had to change my career midway through my life to manage this condition and one of the reasons I enjoy working at Murawin so much is that I can be flexible. I am empowered to manage my condition whilst maintaining a job that I feel has integrity and is shaping Australia and supporting vulnerable people, of which I am one. So, it isn’t just a job to me, it’s important what we do, and I feel like a valued team member. But for me, it’s that underlying purposefulness that is so important.”
“I’ve had to cultivate great mental strength to get through every day, and I do, because you don’t get to give up on yourself. I’m worth it. For me it always comes back to my little mantra:
“If you’re going to be anything, be kind. There’s always more to the story, so just be kind.”
If you’d like to learn more, get support or donate, head to www.lipoedema.org.au
Lipoedema Australia is the national representative body for lipoedema. As a registered charity, they are committed to directing and supporting research and medical recognition of lipoedema, developing a comprehensive treatment/management plan and ultimately finding a cure. They are also dedicated to improving the lives of individuals affected by lipoedema.