In 1979 I was 14 years old and a horrid song called Nice Legs, Shame About Her Face by The Monks was at no 19 in the charts.
I had a Saturday job working on my aunt’s market stall, and noticed three boys leaning over the balcony above the main hall looking at me and laughing among themselves. Suddenly, they caught my eye, and all three, loudly and in unison, screamed down at me: “Nice face, shame about the legs!”
This horrible moment, combined with my own shame and hatred of my horrible, fat, ‘tree trunk’ legs set me on a path of madcap diet and exercise regimes. If I was too fat, clearly I had to diet and then I would get thin, right?
Well, if you have Lipoedema you’ll know the answer to that! My legs got bigger and bigger and despite my still slim waist I eventually became officially ‘obese.’ In spite of all the dieting, exercising, massaging and fat-pummelling, the only thing that ever shrunk was my self-esteem, and all I got for my efforts was an eating disorder.
It was 32 years after the market stall humiliation that I discovered my fat legs are not in fact my fault, that I had Lipoedema. I was diagnosed only by chance at St George’s hospital in South West London, while being examined for osteoarthritis by a consultant who knew about Lymphoedema and referred me to Professor Peter Mortimer’s team. I was seen by Sandy Ellis, now Nurse Consultant for Lipoedema UK. She diagnosed me within seconds of walking in the door!
The diagnosis was liberating and depressing. The first thing I knew I had to do was tell my daughter and my mother that they too had Lipoedema. My mum took it quite well. My daughter was at first devastated.
Setting up Lipoedema UK wasn’t an option; I couldn’t believe no one had already started a national patient organisation and that the condition wasn’t better known about or understood. Professor Peter Mortimer and his team came on board and so Lipoedema UK was born. It’s early days, but if we can help stop women growing up as I did riddled with shame, ruining their health by unnecessary, dangerous dieting and exercise regimes, and facing disability in middle age, we will have achieved our aim.