“Your Lipoedema does not define you. Your body does not define you. YOU define you.”
How would your friends and family describe you?
Passionate, hard working, fun, bubbly, intelligent, a leader, quirky, kind and loving.
When did you first suspect you had Lipoedema?
I have thought I had Lipoedema for maybe around 8 years, give or take. I have always had bigger legs than my peers, and always been so self conscious of them.
How did you first learn about Lipoedema?
A close family member has Lipoedema and she has been open about her diagnosis with me. I went to my GP who knew very minimal information about Lipoedema (but confirmed my suspicions) so, initially, most of my information came from the internet and social media groups for people with Lipoedema. My GP referred me to another GP who specialises in Lipoedema, who confirmed the diagnosis, but was unable to accept any new, ongoing patients. So currently I have no medical support system.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view?
It’s been exceptionally hard to accept that there is nothing that will prevent Lipoedema, and ultimately little that will prevent overall Lipoedema progression.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view?
Health wise, my biggest struggle is sore, heavy legs. Legs that bruise after going to the gym or having a dance on a night out. I’m 26, my legs shouldn’t feel like this. There is also a mental wellbeing struggle which comes from suffering from low self-confidence. I feel really confident about myself generally speaking, but the Lipoedema-affected parts of my body are what keeps nagging at that insecure part of my brain. It’s a struggle to find clothes that fit, that’s often a hard hit on self esteem as I’m 3 sizes smaller in tops than jeans – jeans will fit my waist but not my legs and I can’t wear boots because my calves are too big.
What words of support or hope can you share with women living with Lipoedema?
Your Lipoedema does not define you. Your body does not define you. YOU define you.
What do you wish you knew at the beginning of your Lipoedema journey?
I wish I knew how overwhelming my Lipoedema journey would be. I still haven’t found a GP who is accepting new patients AND who knows anything about Lipoedema. I am also concerned about the costs of treatments. I wish I knew my pain and heaviness would get worse, before I’m even 30, although there is some great virtual support out there via social media groups and pages.
What’s something that people often don’t know about Lipoedema?
There is no cause for Lipoedema – it’s not caused by being overweight, having other conditions or illnesses, or any other reason – except perhaps genetics. Lipoedema hurts and it is hard to live with. Most of us cannot afford to do anything about it because it’s not covered by Medicare, or even private health insurance. This needs to change.
Why do you think it’s important to advocate for awareness of Lipoedema?
There is such little information out there about Lipoedema for both the public and health care providers. For both of those cohorts, there is still fatphobia which impacts opinions on Lipoedema – a condition which treatment should not be based on fact, not opinion. Any woman, no matter their circumstances, including weight or other co-morbidities, can have Lipoedema. We need to make treatment accessible for everyone, this includes massage, compression, surgeries, etc. I am now considering undergoing surgery overseas as it is more affordable than having surgery in Australia, although I don’t want to do this, I don’t see any other option. Surgery for Lipoedema is not cosmetic – it is a necessity to provide a better quality of life.
What do you hope to achieve on your Lipoedema journey from here?
I hope to bring awareness about Lipoedema to both the medical community and the public, as well as advocating for further research and funding.
