Lipoedema is a chronic condition that causes painful swelling, discomfort and mobility challenges for over a quarter-of-a-million women in Scotland.
The condition is caused by an abnormal build-up of fat cells – usually in the legs, thighs and arms, and is often treated with liposuction.
Despite the fact its visual symptoms make the condition relatively easy to spot, people living with Lipoedema are frequently misdiagnosed as obese and denied specialist care.
This month is Lipoedema Awareness Month in the UK and charities across the country are campaigning for better support, access to treatment and increased education.
Isobel MacEwan has Lipoedema and is the chair of Scottish charity, Talk Lipoedema, who are recognising awareness month this year by launching a powerful social media campaign to challenge what she calls “anti-fat bias.”
Isobel said: “Our campaign is all about encouraging people to post bold, body positive content using the hashtag #IamNotLipoedema.
She added: “We support women of all ages and all stages of Lipoedema. I often say to people, ‘The only thing you have in common is Lipoedema,’ because we are all different shapes and sizes, suffering different levels of pain and living different lives but this thing, this condition unites us all and that can be a powerful force for change.”
Alongside community posts, Talk Lipoedema will be hosting a series of social media takeovers this month featuring inspiring women living with Lipoedema on their Instagram.
Isobel explained why these sorts of role models are important for women living with this visibly different condition who are under-represented by main-stream beauty standards.
She said: “Lipoedema is often misdiagnosed as obesity and a lot of women suffer from mental health issues and eating disorders as they come to terms with their changing body shape due to the condition.
“When I was growing up, I wasn’t bombarded with airbrushed images like young women are now and we want to make sure we create a body positive space within our community.
“I can remember being a student in Glasgow trying to survive on 600 calories a day because the boys used to call me thunder thighs.”
In terms of treatment, the options for women living with Lipoedema vast, varied and come with no guaranteed fix: From key-tone diets to compression clothing and most radically liposuction.
Isobel shared her experience of treatment. She said: “I had liposuction four years ago now and I needed about a stone and a half removed from both legs. Can you imagine walking about carrying that? About six and a half litres of fluid on each leg.
“It has improved my mobility, but the difficult thing is that this care is palliative and there’s not a huge amount of evidence that this drastic treatment is a cure. I do know women who have gone through liposuction but years later their symptoms have returned.”
Talk Lipoedema is one of the UK’s most established Lipoedema charities and their mission to support, raise awareness and improve the lives of all suffering with the condition is unfaltering.
Isobel continued: “We support something like 6,500 people on Facebook. People come and go, as they go on their journey, but they know that we are always there to support them, offer them advice and give them a space to vent.”
Positive social media movements like Talk Lipoedema’s #IamNotLipoedema campaign are challenging the way sufferers think about the condition, their bodies and testing the ‘body beautiful’ Instagram ideal.
Despite these breakthroughs, Isobel spoke candidly about the challenges many women with Lipoedema still face from within the medical community.
She said: “There’s quite a lot of anti-fat bias in society and there certainly is that within the NHS as well.
“When I was trying to get my diagnosis, I went to see my local GP and I told him, I think I’ve got this condition and said to me, ‘Is there a cure?’ I said, no. I asked if he would send me to London to see a specialist? He said no. He looked at me over his glasses and told me ‘I think you need to put up or shut up.’
“I had to advocate for myself to get my diagnosis and get the doctors to listen and I’m lucky because I was able to do that, but a lot of women can’t.
She added: “That was one of the reasons I set up this charity and called the organisation ‘Talk Lipoedema,’ because that’s what we need to do because I don’t ever want anyone to live to the age of 50 without getting a diagnosis and I don’t want people to stay quiet.”
If you have or suspect you may have Lipoedema, please get in touch with your GP and check out the helpful information on NHS Scotland’s website as well as on http://www.talklipoedema.org/