Where it all began.

Can you relate?

Discovering you have lipoedema in your late 40’s can feel like someone has suddenly turned the lights on in a room you’ve been standing in for decades. Everything that once felt confusing, frustrating, or unexplained begins to make sense. You stumble across the word “lipoedema” and almost instantly the pieces start falling into place. The Facebook groups have practically diagnosed you already. You scroll through photos and stories and your legs look exactly like hundreds of other women’s legs. Their stories could be your story.

At first there is an overwhelming sense of relief. Finally there is confirmation of something you have known deep down all along — your legs aren’t just fat. That realisation alone can feel validating in a way that is hard to explain. But almost as quickly as the relief arrives, another wave follows. It’s a strange mixture of grief, anger, sadness, and recognition that seems to move through all the stages in a matter of seconds.

Your mind starts replaying every conversation you’ve ever had with a GP. You remember asking questions like “Why am I putting on weight and my legs are getting bigger despite eating reasonably well and exercising?” You think about the times you asked “Why is it when I go for a run I come home feeling thicker and heavier in my legs — and if you actually measured them they would probably be bigger?” There were the strange symptoms too: “How come when someone presses my skin it stings for ages afterwards?” and “Why do I seem to bruise like a bruised thing?”

The blood tests always came back “normal.” Maybe there was the occasional raised inflammatory marker, or a comment about a fatty liver, but nothing that seemed to explain what you were experiencing. Instead you were asked things like “Have you been unwell lately?” or “How much alcohol do you drink?” The implication always seemed to circle back to lifestyle, as though the answer must somehow lie there.

You remember asking your friends strange questions over the years too. “How come you don’t have cellulite on your calves?” or “Why don’t your forearms have dimples like this?” You might have looked at your sister and said half jokingly, “How come you got the spaghetti arms?” or “It’s not fair — when you exercise you can actually see your calf muscle!”

Somewhere in the back of your mind you already suspected there was a family connection. You weren’t the only one with this body shape. There were aunties, mothers, sisters, cousins — all with a similar silhouette.

Then your memory drifts back to high school. You remember being tiny, with a minuscule waist, yet your legs seemed disproportionately large — almost tree-trunk shaped in comparison. At the time you didn’t question it. You were active, sporty, and healthy. But looking back now, it becomes obvious that your teenage body shape was simply a smaller version of the adult body you would grow into.

Clothing suddenly takes on a new meaning too. You think back to all the trousers that gapped at the back of the waist. To fit over your hips and thighs they had to be too big for your waist, and you convinced yourself it was because you had a sway back. Knee-high boots were always a nightmare. You could never zip them up, no matter how many stores you tried. Eventually you would find a pair that almost fit, but then your knees would bulge over the top like a couple of Portabello mushrooms. You wore them anyway, hiding them under long skirts or trousers and pretending you hadn’t noticed.

Shorts? What shorts. You haven’t worn shorts since you were a child. And when you try to find boardies to wear over swimmers, you wonder why they are all cut like Daisy Duke hot pants.

Once you have the word lipoedema, the obsessive deep dive begins. Suddenly you are learning that you need compression tights and probably should be wearing them 24 hours a day. You discover that you should follow an anti-inflammatory diet, or perhaps keto, and add intermittent fasting for good measure. You read about vibration plates, rebounders, and exercising in a pool. Manual Lymphatic Drainage (MLD) appears everywhere, and before long you are convinced you should be having MLD regularly and probably learning to do it yourself every day.

Then come the investigations. You read that you need a leg vein scan, a metabolic screen, maybe genetic testing. The rabbit hole keeps getting deeper. Maybe you have the MTHFR gene. Perhaps MCAS. Maybe hypermobility. Maybe even Ehlers-Danlos Syndrome. Now you are thinking about specialists — an endocrinologist, a rheumatologist, and a GP who understands the condition well enough to refer you to a plastic surgeon for liposuction. But first you should probably find an ALA practitioner to guide you through it all.

And then comes the moment that really stops you in your tracks. None of this is covered under Medicare. Suddenly the questions shift from medical to practical. How the hell are you going to afford all of this? How do you explain to your partner that you’re not lazy and you’re not simply overweight? And perhaps the biggest question of all — where the f&*k do you even start?

All of these thoughts, feelings, and experiences are perfectly normal. Discovering lipoedema can feel overwhelming, confusing, and isolating all at once. But it is important to know that you are not alone.

Rubenesque Lipoedema Clinic was born from these very real experiences, thoughts, and feelings. One day, after yet another deep dive into research and rabbit holes, I turned to my wonderfully supportive husband and said, “Well this disease is sh!t.” Then another realisation followed quickly behind it: “If I find it overwhelming — and I have medical knowledge, can afford most things, and I have you — how the hell is someone who doesn’t have those things supposed to navigate all this?”

It felt ridiculous that women were expected to figure it out alone. So I made a decision.

I’m going to build a clinic.

Welcome to Rubenesque Lipoedema Clinic.