For Lipoedema Awareness month, we hosted a very special photoshoot for women with Lipoedema. We photographed ten women from Queensland and New South Wales, ranging in age and stages of Lipoedema, including two mother and daughter pairs. Many of these women confessed they were nervous to participate as they spend their lives trying to hide their legs, with some of their partners not even seeing their bare legs for decades. These women have bravely participated in the Lipoedema Awareness Photoshoot, despite all their fears, simply for the purpose of helping other women with Lipoedema to get better help. Our goal is to celebrate these women! In our photoshoot we aimed to provide them with a space where they could feel nurtured, safe, glamorous and beautiful – because they are! Please keep reading to learn more about these amazing women.
Rhianon and Pauline
Rhianon: “Living with constant pain is not normal” Pauline: “You are the shape you are for a reason and not just because you’re not dieting or exercising enough” How would your friends describe you? Pauline: I had to ask my friend this question and she said: Pauline is a genuine, caring and thoughtful friend who wears her heart on her sleeve. When she counts you as a friend, shes all in and you know you have a friend for life.
How did you first learn about Lipodema? Rhianon: My grandmother has Lymphedema, so I knew a little about the impacts and the symptoms of that but I never found out what Lipoedema was until I came across Shannon Natalia on TikTok. She was talking about her recent diagnosis and the symptoms she has. I started to do some research of my own while following her journey. The more I learnt the more things started to make sense and I came to realise I had a lot of the same symptoms she did. It’s only from others sharing their stories that we learn how common it is and that we are not alone. Pauline: My daughter Rhianon started to look into it for herself. Can you describe what symptoms Lipoedema presented for you and how these may have changed overtime from your first awareness / diagnosis? Pauline: From the time that I was a teenager I was always bottom heavy, I dieted all through high school, but always had these bulges on the sides of my legs. I had liposuction on my legs about 14 years ago but still did not know it was anything other than normal fat pockets. The result wasn’t perfect or even and maybe this was because it wasn’t treated as Lipoedema but normal fat.
Rhianon: Lipoedema is not like normal fat that with living a balanced lifestyle you will be able to rid the body of it. Lipoedema is diseased fat that has no way of leaving the body except for surgery. Surgery is expensive and with the requirement of multiple surgeries for some its unattainable. I hope with more awareness that Medicare reconsider the impact of this disease so that others living with all different stages of the disease can have better access to health care that will significantly improve their lives. I’d also like more women to know that living with constant pain is not normal. I hope with more awareness that other women can learn to stop being so hard on themselves just as I am still learning everyday and that you are not alone. Pauline: In a world that is driven by social media our expectations on ourselves and society are so unrealistic. Even girls that are genetically blessed have unrealistic expectations of what their bodies should look like, let alone women that struggle with their weight and appearance on a daily basis.
Jane and Zara
Jane: “Be kind to yourself, this condition is not your fault - I wish someone had told me this in my early teens.” Zara: "You're not just overweight and the diets aren't just 'not working'. It’s is a condition and with medical support and involvement you can live with it and prevent it from progressing."
How would your friends describe you? Zara: Funny, loud, always willing to help out anyone.
How did you first learn about Lipodema? Jane: My sister is a nurse and has similar legs to me and she told me what she suspected was wrong. However, the symptoms started when I was around 15 years old. It didn’t matter what I did, the lower half of my body never changed. Zara: My mum Jane got a diagnosis and was constantly telling me I that have it to. It wasn’t until just before the photoshoot that I actually received a diagnosis. Can you describe what symptoms Lipoedema presented for you and how these may have changed overtime from your first awareness / diagnosis? Zara: My legs have always been bigger than all my friends, especially my ankles. In high school I could never wear the shoes I wanted as my ankles wouldn’t fit in them. After I had my daughter 3 years ago the bruising and aches seem to be more prominent. A simple knock to the legs and I’m left with a big bruise.
“There is light at the end of the tunnel, don’t give up.”
How did you first learn about Lipodema? From my niece, she did a lot of investigation after trying to loose weight and having no luck. She is athletic and follows diets religiously without shedding any weight around her lower legs, thighs and buttocks. She came upon the Lipoedema Surgical Solution web site and followed through to see Dr Lekich.
Can you describe what symptoms Lipoedema presented for you and how these may have changed overtime from your first awareness / diagnosis? I have been aware of the size of my calves since I was young and put it down to genetics, however, following my niece’s discovery of Lipoedema, I too made an appointment and was also diognosed with the condition. At the same time I was made aware of a hole in my heart, which was in itself was a life saving exercise due to the risk of a stroke, I have suffered from migraines for years and now know the answer. I have since had an operation to repair the hole and have never felt better.
If it improves the health and self esteem of one girl, then it would be worthwhile. An awareness program which could reach multitudes and improve lives is a worthwhile goal and should be pursued. Promoting it to the political level and to have surgery made available to people without having to access their superannuation accounts to fund the procedures would be ultimate goal.
“The more women that realise Lipoedema is a disease and not a weight issue, the better they would be able to help themselves and others suffering in the same way.”
“Awareness brings the body image “shame” to light and hopefully helps eliminate it. We don’t shame people who have cancer, asthma or arthritis so why shame a person because they have Lipoedema”
Do you recognise these symptoms in your family members? I definitely see Lipoedema symptoms in my mothers side of the family.
Awareness of Lipoedema is important for many reasons. To help it become Medicare funded/rebated for removal via surgery. To inform and educate everyone about the condition and let women know that they are not alone in their struggles with the condition. It’s a lonely world when you aren’t represented in the media/advertising etc. Awareness brings the body image “shame” to light and hopefully helps eliminate it. We don’t shame people who have cancer, asthma or arthritis so why shame a person because they have Lipoedema.
“After my diagnosis, I have found managing the pain a lot easier.” When did you first suspect you had Lipoedema? I remember when I was about 14 years old (and a tiny 46kg!), looking at the cellulite in the mirror feeling so disheartened it was there despite doing sports, exercising, going on runs and eating healthily (and probably not enough). As I got older (16/17), my friends would always compliment me on my thighs and hips because it seemed to be the trend to have an hourglass figure at the time. I continued going to the gym 5-6 times a week and noticed the cellulite was travelling further down my legs and all the way to my ankles and felt sore and heavy. This is when I knew there was something and I must have the disease they call Lipoedema.
How did you first learn about Lipodema? I first learned I had Lipoedema after seeing Dr. Lekich in Miami. I had pondered about going in for the for diagnosis for about 12 months, half because despite knowing I had this disease, having a specialist confirm it makes it feel more real. Can you describe what symptoms Lipoedema presented for you and how these may have changed overtime from your first awareness / diagnosis? The first symptoms I noticed of Lipodema was the cellulite and swelling of my legs. I started noticing that my legs were larger than my peers and my pants and jeans would no longer fit my legs, despite being able to fit my waist. As I continued to ignore my symptoms due to the fear of diagnosis, I noticed bruising, sensitivity, pain, and heaviness. I found even walking without compression would cause pain as the swelling would ‘wiggle’ with each step I took. I stopped running due to the pain and even avoid certain machines at the gym that press on my legs. I even experience significant dizziness! After my diagnosis, I have found managing the pain a lot easier. I now wear compression which has halved the amount of heaviness I feel in my legs and even helped reduce the dizziness. I also bought the LX-9 pump which has been a massive game changer, if I do something I know will exacerbate the pain such as drinking or standing for long periods of time I will use the pump and it resolves it! Do you recognise these symptoms in your family members? Yes, my aunty is also a patient of Dr. Lekich and has recently undergone surgery.
"Love yourself you deserve it."
Can you describe what symptoms Lipoedema presented for you and how these may have changed overtime from your first awareness / diagnosis? When I first found out, I knew my legs were large and very heavy. Even as a young girl, my legs were heavy to walk in. Even though I was a twig, my feet and legs were heavy, and with the change of weather I would get aches and pains. I was told that was growing pains. Over time it was easy to think that I was gradually putting on weight, but if I knew about it before hand, early intervention would have made a big difference. Being at stage four now, having known earlier would have made the world of a difference on the social aspect of life, mental health, all of that. It all gets compromised as you go on to the later stages.
“If lipoedema was well known and treated, I could have started conservative management twenty years ago and experienced the last two decades very differently. It’s important that other people never have to suffer needlessly because this condition exists in the shadows. Let’s bring it into the light where it belongs!” How would your friends describe you? My friends inevitably describe me as bright, cheerful, bubbly, fun loving, life of the party, colourful. However, they only really see the surface part of me, which really is that way, I’m not saying I don’t feel all of those things, and a lot of the time! But I’m also shy, anxious, a chronic over thinker, constantly second guessing myself, and listening to an inner soundtrack of negative self talk that takes most of my energy to fight. Being diagnosed with Lipoedema relieved me so much that I’ve cried with joy many times. Having a medical professional like Dr Lekich confirm that I have a medical condition, and that I truly am not lazy or worthless has been invaluable to me! My diagnosis was very recent, so I’m still fighting the damage that a lifetime of body shaming has driven into me, but now I have the knowledge to help me fight.