“It’s not your fault. You can’t stop it. You can’t fix it. It’s a real disease that genuinely destroys lives. I feel sometimes people think we are crazy and are making it up.”
How would your friends and family describe you?
Before my Lipoedema worsening, leading me to seek a diagnosis, they would have said I was a loud, bubbly, curvaceous but petite woman who is always upbeat and never stops working hard. Now, I think they would say I have become more reclusive, quiet, and feel as though I am defeated a lot of the time. Not how I used to be.
When did you first suspect you had Lipoedema?
I first suspected around age 9-10 when I gained a lot of weight and my legs went from ‘normal’ size to large. Kids and even family started teasing me about my big legs and bum well into highschool.
How did you first learn about Lipoedema?
I always knew something was going on with my body. I asked doctors many times – only to be told it was just my body type. Once, I lost a lot of weight and got down to 42kg and my body shape still hadn’t changed. I started googling, researching, trying to find what it could be. I came across Lipoedema via a google search and from then on I looked into support groups and medical pages. I knew I had always had this disease the moment I laid eyes on those pages.
Can you describe what symptoms Lipoedema presented for you and how these may have changed over time from your first awareness/diagnosis?
My first symptoms as a child were stress related weight gain. I can track my first noticeable change to being 8-9 years old when my little brother had cancer and my parents had a nasty separation. From then on I was the chubby kid. I couldn’t get boots, pants, anything to fit and I felt out of place. Over time I started to accept that this was my body. I wasn’t too worried about it as a child or teen until I was picked on and bullied for my body. I started noticing my hands and feet would swell while exercising or at high altitudes. I noticed that no matter how much I changed my diet or exercise I always looked like this and was always in pain. Fast forward to 2019 I found myself in an abusive relationship while pregnant, this is where it really got worse for me. While pregnant I started swelling in weird places now too like the back of my neck and my eyelids. This never went away. I still have a puffy neck hump and lymphatic issues in my face now. After leaving that relationship with a newborn baby I went through COVID lockdowns and home schooling my older child all on my own. Lost my job. Didn’t eat the right foods. High stress. I gained 20kg and my Lipoedema EXPLODED. I have definitely found a direct correlation with stress and with eating a lot of inflammatory foods like wheat, sugar and dairy.
Do you recognise these symptoms in your family members?
I believe all of the women on my mothers side. It makes sense now that some of us who were very into gym and eating well still could never lose weight on the arms and legs or the little belly pouch.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view?
The more trivial issues are that I have never been able to wear boots or strappy heels because they don’t do up over my huge ankles. I Haven’t been able to buy skinny jeans or anything tight even as a child. Until I gained weight in lockdown my waist was a size 6 and my legs were a size 14. It looked weird and I was never able to dress myself because I have always struggled clothes shopping. I feel self conscious everywhere I go, knowing my body doesn’t look right, feeling as though people are judging or making fun of me. It changes your self confidence and it’s a constant daily battle.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view?
I’ve never been able to go for a run, jump on a trampoline, even climb stairs without pain. Even as a child. This has greatly impacted my efforts trying to stay fit and healthy. I developed an eating disorder and became very restrictive at around age 22. Seeing foods as either ‘good’ or ‘bad.’ I banned myself from eating bread, pasta, anything from an animal or anything processed. I did lose a fair bit of weight and swelling but that mental state has stayed with me ever since and I still see good in that way. It means that even though I eat a very clean Mediterranean based diet and nothing processed I am still gaining weight and my disease is worsening while I see others eating junk food and staying slim. The way that makes you feel on the inside is indescribable. You feel jealousy, hopelessness and anger.
What words of support or hope can you share with women living with Lipoedema?
The only hope we have is one another. It feels as though no matter what we do for our Lipoedema, there will always be pain and struggle and mental health issues. We will always have this support network of amazing women and medical professionals though, who are so kind and understanding. If you think you or someone you love may have Lipoedema I urge you to find a support network as this disease is excruciatingly painful, depressing and lonely at the best of times. There are treatments you can do to help, however they are costly. I personally have not been able to have any yet due to having children on my own and being on a low income. I prioritise my childrens diet and health now so that they don’t struggle as much later.
What do you wish you knew at the beginning of your Lipoedema journey?
I wish I knew how many women REALLY suffer with this. At first I thought I was alone, but there’s thousands of us.
What’s something that people often don’t know about Lipoedema?
It’s not your fault. You can’t stop it. You can’t fix it. It’s a real disease that genuinely destroys lives. I feel sometimes people think we are crazy and are making it up.
Why do you think it’s important to advocate for awareness of Lipoedema?
It’s important for me personally because I never knew. So many women never knew and that frustrates me. Even though we beg for help and answers we are constantly turned away and gaslit and told we are just fat or eating too much salt or that it’s our natural body type. Each turn I took hoping this would lead to an answer I found that nobody I saw cared that a young woman was experiencing pain or felt like something was wrong in her body. They still don’t. The medical world is notorious for minimising womens issues. It’s important that this next generation don’t find out after it’s too late. I see some women who can’t walk, they are wheelchair bound or even bedridden due to Lipoedema. It shouldn’t have to get to that point. Somebody should have helped them. Thanks to Dr. Lekich and his team Aussie women now HAVE someone who will listen and help us. They need to know this help exists.
What do you hope to achieve on your Lipoedema journey from here?
I hope to connect with other women with Lipoedema so we all have a support network full of people who truly understand us. I hope that one day I can afford therapies and surgery and this disease will be recognised by Medicare so that I don’t need knee and hip replacements or lose my mobility. Currently you can get weight loss surgery and cosmetic breast surgery covered by Medicare but you cannot get assistance for removal of fibrotic Lipoedema tissue. I hope to show other young women what Lipoedema looks like because you may not even know you have it. I hope that one day I can find a journey for myself that leads to a long and healthy life and not one full of pain and suffering because my current mental health has been destroyed by trying to manage this every day. I hope that I can raise awareness and share my story with the world and that the stigma of being fat and lazy is no more. I hope that my two daughters can look at their mothers changing body and believe that she is still beautiful. I hope my girls don’t have Lipoedema, but if they do, I hope that one day the world is kinder to them than it was to me…and that they know they are beautiful, strong and supported.
