Lipoedema Scotland: Women reveal pain and stigma of little-known condition

When Nicola Meikle hit puberty she noticed her body began to seem different to those of her friends, and that she worse larger clothes sizes.

By Elsa Maishman
Sunday, 1st May 2022, 4:55 am

Through university she tried to lose weight, developing a problem with exercise and bordering on disordered eating.

It was not until she was in her 30s, having experienced swelling in her lower legs after giving birth, that Ms Meikle was diagnosed with lipoedema.

This little-known condition, which is much more common in women, involves an abnormal build up of fat in the legs and arms and can be painful.

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For West Lothian-based Ms Meikle, now 37 and working in HR, the diagnosis was a relief. She could stop "beating herself up” about her weight, believing she should “try harder” and further limit what she ate in vain attempts to lose weight.

She is now able to better manage her condition by taking advice on avoiding certain foods, and wears compression garments.

But the diagnosis has not stopped the “constant” pain, which can be “quite difficult to manage”.

“It feels like your skin is crawling, or like a fizzy, painful feeling underneath your skin,” she said.

Nicola Meikle found a diagnosis helped her "stop beating herself up".

On top of the pain is continued stigma from others, who “don’t understand” the condition. Some friends and family members think Ms Meikle is “just not trying hard enough” to lose weight.

Before her diagnosis, she also saw this attitude from doctors.

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For Lisa McKain, 25, from Glasgow, the condition is also painful.

Lisa McKain said the social stigma of the condition is worse than the pain.

"I have numbness and nerve damage in my feet, my legs and my stomach,” she said.

"I have days where if my cat brushes against my leg it can really hurt. If I fall it’s a nightmare to get back up, I need quite a lot of help to do so. I bruise easily… it is a very painful condition to have.”

But for Ms McKain, the social stigma is even worse than the pain.

“I have to justify the way I look or the requirements I need, like a specific type of seating,” she said.

“I feel like I have to constantly watch the places I go to. Do they have seating that's not got armrests on it? Do they have a disabled toilet? Is there enough room to get by at that table?

"And then when you make inquiries… you're worried the person is judging you for your weight, they don’t believe you. It’s always that sense of paranoia that people just think you're unhealthy and you are making excuses.

“You do get people who are patient and will listen, but you meet others who just look at you to say ‘oh there’s another fat person making an excuse’ and it can be demoralising, it’s put me off going after things.”

As a child Ms McKain was told she was “just overweight”, and it was not until she discovered lipoedema through her own research online and discussed her symptoms with a doctor that she was diagnosed.

There is very little research on the condition, and even less funding for treatment, she said.

She is currently working on a dissertation about how lipoedema affects people’s relationships, as part of her studies at Glasgow Caledonian University.

Ms Meikle is a trustee of Talk Lipoedema, a Lothian-based charity which supports people with the condition.