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.
When did you first suspect you had Lipoedema? Pauline: When my daughter Rhianon started telling me about the symptoms and some of them resonated with me.
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.
Do you recognise these symptoms in your family members? Pauline: My mother has always been a bigger lady and also bottom heavy, I assumed that I just had my mother’s genetics when it came to weight and shape. As she has gotten older, she is now having a lot of trouble with Lymphedema and fluid build-up in her legs. She has to wear stockings all the time now, and has physio once a fortnight to help move the fluid from her legs. What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? Rhianon: Living with the constant pain in my joints, not being able to sit for very long before my hips ache. Swelling and pain in my legs from being on my feet for a short or long period of time depending how they are that day. My arms becoming fatigued easily and painful while doing anything overhead. Pauline: Trying to keep my weight down has been a constant battle. Lifestyle choices has helped as I have gotten older. But I have also learned to love myself as well. What words of support or hope can you share with women living with Lipoedema? Pauline: Knowing that you are the shape you are for a reason and not just because you’re not dieting or exercising enough. What’s something that people often don’t know about Lipoedema? Rhianon: Lipoedma is triggered by hormonal changes so it may first appear at puberty, pregnancy or menopause. Pauline: That you can be any size and have it. Why do you think it’s important to advocate for awareness of Lipoedema?
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.
When did you first suspect you had Lipoedema? Jane: I first found out about Lipoedema about 5 years ago. Zara: Probably about the last two years as that’s when my mum Jane got diagnosed.
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.
Do you recognise these symptoms in your family members? Jane: My nan, mum, sister, cousin, and daughter also suffer from Lipoedema. Zara: Yes, although my mum Jane was the first person in the family to receive a diagnosis, we suspect that my nan and aunty also have Lipoedema. What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? Jane: I struggled to find clothes and boots, I dieted, starved, exercised and punished myself. Nothing made any difference. Zara: I have always had bigger legs than my friends. I can’t wear certain types of boots because they don’t fit my ankles. My legs are always covered in bruises. I just don’t have much confidence in wearing short skirts or anything that doesn’t cover my legs What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view? Jane: Many drs over the years told me I was fat and needed to eat less and exercise more - so I did to extremes I couldn’t sustain and would give up and then pile weight back on. Then I would go back to extreme diets and exercise, it has been a cycle my entire adult life. I got bigger everytime. I hated myself, I suffer from very low self-esteem. Every pregnancy made my legs get bigger. Over the last 5 years the tops of my arms have begun to get bigger. What words of support or hope can you share with women living with Lipoedema? Jane: My advice for anyone with this condition is be kind to yourself, it’s not your fault. I wish someone had told me this in my early teens. Zara: Get the diagnosis and find out what you can do to support yourself. Why do you think it's important to advocate for awareness of Lipoedema? Zara: So that people know there is help out there. 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.
Gillian
“There is light at the end of the tunnel, don’t give up.”
How would your friends describe you? Outgoing When did you first suspect you had Lipoedema? Earlier this year
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.
Do you recognise these symptoms in your family members? I do now that I know what to look for, also in other people that I see on the street. What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? I use to be active either bush walking or just going for long walks, over the last few years I have scaled back due to the discomfort and heavy feeling in my legs, more so when I walk up stairs. What words of support or hope can you share with women living with Lipoedema? That there is a cure that is available. My niece suffered mentally with the thought she would be overweight for life, however, this is not the case and there is light at the end of the tunnel, don’t give up. What do you wish you knew at the beginning of your Lipoedema journey? I wish I had learned about Lipoedema a lot earlier, there is just not a lot of information out there regarding Lipoedema and the symptoms to look out for. This lack of information may be responsible for a lot of mental anguish amongst young women who don’t understand why the weight is not falling off their lower body whilst the top half is perfectly proportioned. Mentally, it is quite dibilitating and may have resulted in undue suffering from not only the woman but their families as well. What’s something that people often don’t know about Lipoedema? Of its existence. Why do you think it’s important to advocate for awareness of Lipoedema?
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.
Renee
“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.”
When did you first suspect you had Lipoedema? I was taking part in Sam Wood’s 8 week challenge, trying to get some exercise within the COVID lockdown period (end of 2020), and we had to provide a before photo shot of ourselves at the start. It was embarrassing, but I couldn’t take part without it; and thank goodness I did, as one of the lovely participants brought my attention to this condition called Lipoedema and that she thought I had this condition! I started researching the disease and immediately recognised myself as a candidate of lipoedema.
Do you recognise these symptoms in your family members?I have always wondered why my body (but more specifically my thighs) looked this odd shape and I couldn’t find anyone else that looked like me. When I found out about Lipoedema and started researching more about it, I was drawn to some memories of my grandmother who always wore these oversized dresses and had these little legs and wide hips. She became bed-ridden towards the end of her life because her little feet (just like mine) could not carry her weight – even after losing heaps of weight on Weigh-Less, she just couldn’t lose the weight from her hips. That made me realise that my grandmother suffered from Lipoedema her whole adult life, and I think several of my aunts and great-aunts had the same condition. And they didn’t know about this condition, so lived with this for their entire lives. What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? My husband is an avid walker and enjoys doing Parkrun. I wanted to support him and do the course/s with him. Initially it was easy enough and I got used to the walk, but over time it got harder as the Lipoedema grew so did the pains in my ankles, heels and legs, to the point where it was just too difficult to walk long distance without being in so much pain. Besides that, it is very hard to find correct fitting clothes, because everything has to fit over my hips/thighs, so everywhere else it is too big! Sitting in chairs with arms in restaurants was a no-go, and I would always choose a restaurant/café that didn’t have those types of chairs, or change the chairs around. Or even flying was not fun, as the armrest could not come down past my hips! Even love-making sometimes became uncomfortable and awkward! This condition truly affects so many parts of our lives that we are unable to live a ‘normal’ existence with it. Why do you think it’s important to advocate for awareness of Lipoedema? If it wasn’t for someone telling me about this condition, I would not have heard about it or known about it. I was able to tell my family about it, and hopefully they can share that too. I now see so many women that may possibly have this disease, and if we do not make them aware, they too may end up bed-ridden due to the unnecessary weight they have to carry around with them to the end of their lives. And the more women realise that this is a disease and not a weight issue, the better they would be able to help themselves and others suffering in the same way.
Stacey
“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”
How would your friends describe you? My friends would describe me as generous and organised.
Do you recognise these symptoms in your family members? I definitely see Lipoedema symptoms in my mothers side of the family.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view?Constant inflammation, fluid retention and pain in my legs makes daily activities exhausting. What do you wish you knew at the beginning of your Lipoedema journey? Discovering Lipoedema years ago would have helped my mental health immensely. I have lots of body image issues and have struggled with these issues since my late teens (looking back I started noticing tell tale signs of Lipoedema then, but wasn’t aware of the condition). What’s something that people often don’t know about Lipoedema? I want people to understand that women with Lipoedema are not lazy or advocating for obesity (as it is often viewed). We want people to understand that this is a painful, chronic condition that is completely out of our control. The daily mental battle is hard enough, not feeling “normal” or struggling to find clothing to fit correctly from the waist down is hard enough, we don’t need comments, stares and humiliation. I also wish people understood how painful the condition is. My legs are constantly covered in bruises and even just having my toddler climb on me is excruciating 90% of the time. Why do you think it's important to advocate for awareness of Lipoedema?
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.
Sophie
“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.
What’s something that people often don’t know about Lipoedema? Lipedema can cause a lot of other health issues. I missed my final high school exams and nearly graduation because I was in hospital with a common complication from Lipoedema, I even had nurses coming to treat me in my own home at 16! I also think people aren’t aware that Lipoedema can cause some pretty nasty body dysmorphia. I think if more people were aware of Lipoedema and how common it actually is, it could maybe be normalised one day and treatment options will be more accessible via medicare.
Jamie
"Love yourself you deserve it."
How would your friends describe you? Kind, genorous, outgoing, patient, passionate. A very warm and loving person. I’m a kid at heart.
When did you first suspect you had Lipoedema? I actually wasn't aware I had Lipoedema. It was because of a caring Manual Lymphatic Drainage therapist that took passion in her work to educate me that I first became aware that I could have this condition.
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.
Do you recognise these symptoms in your family members?What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? Yes, my sister has now also been diagnosed with Lipoedema, with stage two and three. My mother might have had it, she may have had stage three and four. I also have a lot support workers and can see it in some of them,however, I can tell these people that this is happening to you. We can share these tears. If it changes one persons life, that they can find out about it at an earlier stage then it’s worth it. What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? I’m no longer able to work again in my life, I’m in a wheelchair. Saying that and living that is a completely different thing. When I want to go to an appointment, meet a friend for coffee, my wheelchair doesn’t fit through their front door. You disappear. People don’t invite you to come hang out anymore. You loose that social aspect of your life. People don’t see you, they see me in a wheel chair and then talk to my support worker. You don’t have a voice. I don’t have a relationship, as I have 24/7 care. So it impacts my close relationships and my lifestyle. As you come to the later stages it actually impacts your health. My nerves and organs are being compressed by the Lipeodema. Having lung, liver, kidney and joint problems. The amount of fluid can take over your body and can restrict your breathing. What words of support or hope can you share with women living with Lipoedema? It’s not your fault. You didn’t do this to yourself. Enjoy the small things in life. Through self care, love yourself-you deserve it. Get in to conservative management as soon as you can. What do you wish you knew at the beginning of your Lipoedema journey? That this is what life could be like. I wish I knew what the worse case scenarios would look like day to day. What’s something that people often don’t know about Lipoedema? People assume that you’re fat, that’s how they look at you. People don’t know how to not judge. Why do you think it's important to advocate for awareness of Lipoedema?
There are so many women out there believing that they are fat, believing that they have caused this upon themselves because people are telling them that. I have had doctours tell me that this is just an “internet disease” -but it’s not. Lipoedema is a condition that needs medical support, and it’s important because that one person’s life could be changed. My friends often tell me that I’m brave, but I don’t think it’s bravery, my advocacy comes from just trying to stop women from being in my condition.
Rachael
“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.
When did you first suspect you had Lipoedema?
Never! I had never heard of it. I was being treated by a pain management specialist who noticed that poking me in my arms and legs was a lot more painful for me than it should be. He asked if I had ever been diagnosed or treated for Lipoedema, and when I said I had never heard of it, he gave me the Lipoedema Surgical Solution flier and offered to refer me to Dr Lekich, which I accepted, but in all honesty I had so much going on with the condition which was causing my pain (the reason I was seeing a pain management specialist in the first place) that I didn’t really do any research, and showed up to my first appointment almost completely clueless!
How did you first learn about Lipoedema?
I first learned about Lipoedema from Dr Lekich at my first appointment – when he did my ultrasound and gave me my initial diagnosis and referral for further testing. I think he was a lot more aware of how Lipoedema had affected my life, especially my mental health, than I was at that point, and he made a lot of helpful suggestions such as emphasising the help that informed mental health support, and taking conservative treatments seriously would be for me in the long run.
Can you describe what symptoms Lipoedema presented for you and how these may have changed overtime from your first awareness / diagnosis?
I’m still early in my journey, so for me it’s more a case of recognising things that I always dismissed as normal (such as a gentle poke in the arm actually being really painful) and connecting them back to my diagnosis. I keep finding myself asking people if certain sensations or feelings are normal for everybody, because I spent so many years just dismissing the feelings of pain and heaviness as something that everyone felt, and I’m only now realising how many of the things I have taken for granted are actually not experienced by pretty much everyone else I know!
Do you recognise these symptoms in your family members?
Yes, I recognise Lipoedema symptoms in some of my famiy members.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view?
It’s virtually impossible to get a date with a man if you’re carrying any extra weight. Even if you have Lipoedema, my experience has found that the average dating prospect is more concerned with how they would look showing up with someone who wears my size of clothing on their arm, than about learning about me or even conversing long enough for me to explain what Lipoedema is! It’s also really hard to dress well, because clothes aren’t made to fit us! I haven’t been able to wear knee high boots since I was 16, and even then at 16 and wearing a size 6, I had to order “wide calf” boots if I wanted to wear knee length. If my legs fit into pants then they’re either made of stretchy material (woe betide anyone who tries to tell me that leggings aren’t pants!) or the waist is big enough to fit two of me. My real issue though has always been my upper arms. Even as a teenager I was unable to wear shirts that didn’t have stretchy material in the sleeves – my arms never fit into the sleeves of tops in my size. It’s made worse by me having narrow shoulders, so if I want to fit my arms through the sleeves, the shoulders are usually hanging down around my elbows. I love jackets, they’re one of my favourite articles of clothing, but I can’t wear them myself, because in order for the sleeves to fit, the rest of the jacket is always so baggy that it looks like a potato sack and is really unflattering.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view?
There’s the mental health issue that I have already discussed further up. The damage of going through your life constantly being shamed and ridiculed for being morbidly obese, even by my former psychiatrist, has left lasting scars and a feeling that I always need to apologise for, or justify my size, because it renders me an unworthy being. Every ad tells me so, every new fad diet, every stick slim model, every cruel comment online about plus size women.
What words of support or hope can you share with women living with Lipoedema?
The condition is becoming more well known! If you have a GP that you see regularly and trust, have them research it and inform themselves. The more of us that spread the word, get our treatments, share our network of Lipoedema friendly specialists, and inform our friends and family of the existence of this condition, the easier it will become for each new person to receive a much needed diagnosis.
What do you wish you knew at the beginning of your Lipoedema journey?
I wish I had known Lipoedema existed twenty years ago when this slow and steady and unstoppable weight gain started, and that I had the knowledge and the confidence back then to insist that a doctor take me seriously and not fob me off with the old “diet and exercise – don’t be lazy and start eating better” routine.
What’s something that people often don’t know about Lipoedema?
I’ve found that most people, even those who know about Lipoedema, aren’t aware that you can get it in your arms as well as your legs! My arms are where I’ve always noticed the biggest discrepancy and had the most problems!
Why do you think it’s important to advocate for awareness of Lipoedema?
For every negative thing that I have outlined above. None of it needed to happen, 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!
