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Practice comment

'I have lipoedema. So please don’t blame me or call me fat'

  • 6 Comments

If I am fat, then it must be my fault, right? This is what I believed too until, after a lifetime of failed diet and exercise regimens, I was diagnosed with lipoedema, a genetic condition countless doctors, nurses, diet experts and physical trainers I consulted seemed not to have heard of.

Thin as a child, at 15 my legs got fatter than those of the other girls at school, even though some of them had tummies clearly tubbier than my still skinny waist. My thighs rubbed together and red rashes developed between them. Slow on my feet, I was last to be picked for team games and I became acutely conscious of my fat wobbly legs in PE.

The social stigma lay heavily on me. I was bulimic by age 19, taking laxatives after every meal, alternately starving and then bingeing, beating myself up mentally for not being able to make myself sick. Nothing, but nothing made my legs thinner.

Then I put on a lot of weight when I was pregnant and then my ankles disappeared altogether. By then, I had stopped the laxatives but was still alternately dieting, fasting, bingeing and compulsively over-exercising.

Six years ago, I discovered Overeaters Anonymous and started eating normally and healthily for the first time since I can remember.

Previously, I had never had much sympathy from anyone, especially not from doctors. I used to dread the three-monthly visit to renew my prescription for the contraceptive pill, knowing what would follow once I stepped off the scales - a comment that my BMI meant I was “obese” and I should lose weight. Protestations that I was trying were met with a look that said simply: “Here’s another fatty in denial.”

I was diagnosed with lipoedema only by chance, when a consultant who was treating the osteoarthritis in my knees noticed my swollen ankles and referred me to a colleague who explained that this genetic condition was the cause of my large and painful legs.

At her words, everything tumbled into place: runs in families… makes women fat below the waist… symptoms begin at puberty then get worse with further hormonal changes such as using hormonal contraception, pregnancy… the fat is often painful to the touch… many women also have enlarged upper arms… frequent knee problems. Then she said the magic words: the fat wasn’t my fault, because it’s not caused by overeating, diet and exercise is pointless as neither will shift it. Oh to be believed!

Founding Lipoedema UK to raise awareness, provide information and promote research into lipoedema is my way of doing what I can to help prevent other women from suffering and instead help ensure they get as early a diagnosis as possible.

So please, the next time you meet a women whose BMI belies a relatively small upper body and/or slim face, and whose bottom half is out of proportion with her torso, don’t simply suggest she loses weight. Believe her when she says she has tried and ask: could this be lipoedema?

Suzanne Evans is chair, Lipoedema UK.

  • 6 Comments

Readers' comments (6)

  • I and I am sure others will relate to this article,having suffered exactly the same. Diagnosed after my children were born, it was in a way a relief, but also upsetting as I then knew that whatever I did could not alter my fat legs and upper arms.
    I have every sympathy with the writer!

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  • congratulations to Suzanne Evans for founding Lipoedema UK and lets hope it will help many.

    I find it a tragedy that she and possibly others have been denied treatment all these years in favour of others which clearly would not work as well as all the stigma suffered.

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  • Congratulations Suzanne, and I hope you do not think I am marginalising what you are doing, by what I am about to say.

    I'm sure a fair number of professionals are aware of this, but it also needs to be pointed out that being overweight to seriously obese, can also be due to a range of other prescribed drugs, including many of those used to treat depression; However, I do wonder how many depressed people (For whom having a positive image of themselves plays an important part in treating depression) then become even more depressed, due to the side-effect of the prescribed drugs they are on.

    As far as I am aware, there aren't any dieting regimes that will have a positive impact on weight gained this way. However it also seems that those prescribing anti-depressants feel that a patient becoming overweight, is considered an 'acceptable' side-effect of these drugs. I feel it's it's about time the Pharma companies making these compounds, put some serious money into delivering products that do not exhibit these side-effects.

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  • it is a rude awakening to discover that doctors who prescribe treatments and carry out procedures are not one jot interested in the consequences on their patients of any undesirable or unwanted side effects and interactions other than those which may seriously endanger health and put them in a litigious position. their own need is just to get on with the job, accomplish their tasks by following the protocols and guidelines, meeting their targets, getting recognition from their boss or colleagues, filling out the patient's file and collecting their pay at the end of it. the psychological status of their patient is irrelevant and can be ignored, or if really a more serious and noticeable problem, it can be conveniently delegated to others in the interdisciplinary team to pick up the pieces and sort out!

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  • George Kuchanny

    Dear Anonymous | 7-May-2013 6:02 pm. Bang on the button. A concise description of a subtly broken culture. How to fix it is an exercise that has engaged many fine minds for a very long time.

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  • I am a nurse and i also have lipodemea, i can definately say that none of my colleagues had heard of this until after i had been diagnosed and then even amongst health professionals there is still a stigma attached to it, my gp has clearly been told of the diagnosis but still refuses to believe it and i just keep being told you need to lose weight, never mind the 4 st + i've lost over the last 2 years and a well done keep going just the usual you need to lose weight, i'm met with the 'hmph yeah right I don't think you're really trying' look and its so upsetting when you really are doing everything possible. Not all women with lipoedema are on antidepressents or drug therapies however this illness does contribute greatfully to a womans self esteem, self worth and overall enjoyment of life, nobody can judge a person with this disease until you have been there and lived it, knowing that you most likely have passed this onto your children for them to suffer the same

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