For years, I thought being overweight was my fault.
At elementary school, bullies called me ‘thunder thighs,’ and by high school I had to wear women’s size 14 pants because the standard school uniform wouldn’t fit me.
I was 16 when my first boyfriend dumped me because I was ‘too big’ and then actually called me afterward to clarify that he meant my weight, not my height, although at 5ft 8in I’ve always been pretty tall too.
Whenever I went to the doctor, for whatever reason, they would ask me to step on the scale and then tell me I needed to lose weight.
They’d look at me and just assume I was lazy or had a bad diet.
But I ate healthily and really did try to exercise, taking fitness classes, lifting weights and swimming. Yet it often left me in pain or injured.
My ankles would swell, I’d get intense stabbing pains in my legs walking up stairs, and even kneeling could trigger excruciating, knife-like pain in my shins.
I worked hard to love myself as I was. I won beauty pageants and worked as a plus-size model, as well as a TV presenter.
I worked hard to love myself as I was: I won beauty pageants and worked as a plus-size model, as well as being a TV presenter, writes Emily Blake
Emily’s legs before and after. In June 2022, she paid to have liposuction to remove the lipoedema on her thighs and in May 2023 on her lower legs
Deep down, though, I was frustrated that no matter what I did, I couldn’t change my figure, and I always believed it was my fault.
Then, in 2021, my mother was diagnosed at 55 with a hereditary condition called lipedema.
The condition, which almost exclusively affects women, causes an abnormal buildup of fat, usually in the legs and sometimes the arms, and can emerge or worsen during periods of hormonal change such as puberty and pregnancy.
Lipedema fat behaves differently from ordinary body fat and can give the skin a lumpy or uneven appearance.
The affected areas can also feel unusually heavy, tender or painful and, in more severe cases, the condition can make it difficult to walk and carry out normal everyday activities.
Mom had initially gone to the doctor because she was in pain. Her retail job meant spending much of the day on her feet, and she couldn’t understand why she was suddenly struggling to do it anymore.
Then, at 31 and at my largest, a US size 18, I realized I might have it too.
I was living with my partner and working for the UK’s Office for National Statistics at the time. After seeing my family doctor, I was referred to a local specialist service, where I received the same diagnosis as my mom.
While it was a relief to realize the weight I’d been battling with all my life was not my fault, it scared the life out of me to learn I had an incurable disease that had the potential to rob me of my ability to walk.
Lipedema is thought to affect as many as one in ten women, yet there is no cure.
At first, I was very practical, doing my research and working out what I could do. It only really hit me a few weeks later, when I became very down and upset.
There are lifestyle changes that can help relieve some symptoms, but treatment options are limited.
Specialized liposuction can remove the abnormal fat, but it can cost thousands of dollars.
There’s some evidence that reducing inflammation in the body may help with symptoms.
So I started cutting out sugar and found that the less I ate, the less pain I felt. Now I try to stick to a low-carb or keto diet, avoiding added sugar and cutting back on foods high in carbohydrates, such as bread and white pasta, while mainly eating protein with vegetables or salad.
I also wear prescription compression tights and compression leggings to the gym. Manual lymphatic drainage massage can help with symptoms too.
At 36, I’m in the best shape of my life – tackling the lipedema and losing weight has allowed me to enjoy aspects of life that I just couldn’t do before, says Emily
The problem is that once lipedema fat develops, ordinary weight loss doesn’t get rid of it in the same way it reduces other body fat. You may lose weight elsewhere while the areas affected by lipedema remain disproportionately large, sometimes making the condition even more noticeable.
My research indicated that the only treatment likely to significantly change the appearance of my lipedema was a specialized form of liposuction. I decided to go for it, using money I’d managed to save during Covid.
In June 2022, I paid £7,900, around $10,500, to have liposuction to remove the lipedema fat from the front and inner areas of my thighs.
Then, in May 2023, I spent another £5,900, around $7,900, to have the same procedure on my lower legs.
In each case, it was outpatient surgery under local anesthesia and light sedation, so I was in and out the same day.
But the recovery was an ordeal. Initially, the dressings needed to be changed three or four times a day, and I had to wear compression leggings constantly for six to eight weeks, along with all the bandaging and padding underneath.
But it was all worth it.
A few years on, the scars are almost invisible, just tiny dots. The pain I was in has pretty much gone, and I’ve been able to take exercise classes such as BodyCombat, Pilates, yoga, Zumba and dance fitness. I’ve also been training hard with weights to build muscle and improve the appearance of my legs.
I even noticed hair growing on my thighs for the first time I could remember.
Before, I’d barely ever had to shave my legs. After the operations, that suddenly changed.
The surgeries aren’t a cure or a definitive solution, but for me they’ve been a bit of a reset. I’m hoping that by managing my symptoms and staying active, I can maintain my mobility.
In December 2024, I started taking Mounjaro after hearing other people with lipedema report that it had been transformative for them, not just for weight loss but for their symptoms.
I took it until the price soared in September last year and have recently started again, this time taking a low 5 mg dose to manage my weight.
I’ve lost nearly 84 pounds, going from 252 pounds and a US size 14 to just over 168 pounds and a US size 8.
At 36, I’m in the best shape of my life. It’s not that I hated the way I looked before. I was curvy and proud. But tackling the lipedema and losing weight has allowed me to enjoy parts of life, such as exercise, that I simply couldn’t before.
But the battle isn’t over.
I’m saving up to have liposuction on the backs of my legs and my upper arms because I’m getting to a point with my weight training where I’ve toned my arms as much as I can.
I can see definition in my shoulders and the tops of my arms, but the lipedema fat remains around my triceps and hangs down, which makes me very self-conscious.
Even after that, I’ll have to stick to my diet, exercise, massage and compression garments to help manage the condition. It’s a lifelong commitment.
I now realize that my beautiful grandmother probably had the condition, too.
Told she was simply overweight, she spent most of the time I knew her confined to a chair, in constant pain, wincing with every step she took and believing, right up until she died, that it was all her fault.
Within the family, there was always a reference to ‘the Hudson knees,’ after my great-grandmother’s maiden name: large, rounded knees and big legs that all the women on that side of the family seemed to have inherited, features that we now recognize can be associated with lipedema.
It’s heartbreaking that she, like so many women, had no idea she may actually have been suffering from a painful condition that, although it cannot be cured, can be managed.
It’s why it’s so important to me to spread the word about lipedema.
The sooner you’re diagnosed, the sooner you can take steps to manage it.
As told to CLAIRE COLEMAN
