My friend finally has a diagnosis of lipoedema, but she still feels judged when she explains it

Irish Times

13 hours ago

A seemingly innocuous memory surfaces regularly for me. I was a teenager paddling on the beach in
Clonea
, near
Dungarvan
. A beautiful, dark-haired woman in a navy swimsuit ran past me from the sand into the waves. She had a slender upper body but her legs were disproportionately large. They were doughy-looking, uneven and lumpy with lots of bruises. Her feet were as slender and narrow as her upper body, despite a cuff of fat that made her ankles look three times the size you would expect given her feet.
As a teenager self-consciously huddled into rolled-up jeans and a jumper, with no intention of swimming, I was envious of this woman's confidence. All these years later, I think I might know what was happening with her legs. I wonder if she had lipoedema? If she did, I wonder if she knew?
It is unlikely she did. June is International Lipoedema Awareness Month. It is badly needed because lipoedema is a neglected and much misunderstood disease.
The director of
The Lymph Clinic
, Meadbh MacSweeney, defines lipoedema as a disorder characterised by a genetic, inherited, female-dominant, hormone-related maldistribution of fat. In other words, women with lipoedema have legs and hips that are heavy, painful, and – because it is
not caused by being overweight
– resistant to the kind of diet and exercise that normally reduces weight. It is quite likely that the grannies, aunts or mothers of sufferers had mysteriously heavy and sore legs, too.
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In the early stages, the skin is smooth. As it progresses, the fat becomes fibrotic and nodules can be felt under the skin, sometimes compared to rice, or akin to frozen peas. In its later stages, the affected areas become noticeably more disproportionate to the rest of the body. Larger nodules are palpable under the skin, and fat pads begin to develop around the thighs and knees. Their legs can become quite distorted looking, with large overhangs of fat and skin, causing predictable effects on mobility.
Many women also have it in their arms, and some predominantly so. Just like in legs, it results in pain, soreness and tiredness. In the early stages, feet and hands remain normal sized, giving rise to the bracelet or cuff effect around the ankle or wrist, almost as if the feet and hands belonged to another body.
Given the stigma around body shape, the fact that it is hormone-related and often kicks off in puberty means that many young women think they are simply overweight. They grimly start to diet and exercise. What often happens is that they lose weight everywhere else, but their legs (or arms) remain stubbornly disproportionate.
Finding help is hard. It is often misdiagnosed as
lymphoedema
, which results from an abnormal accumulation of lymph fluid in the body's tissues. Lymphoedema occurs when the lymphatic system, a vital part of the immune system responsible for draining excess fluid, proteins and waste products from tissues, and returning them to the bloodstream, is either damaged due, say, to cancer treatment, or impaired since birth.
Unlike lipoedema, lymphoedema often affects one limb more than another. In the early stages, an indent will be left when the swollen area is pressed. Feet and hands are affected. Normal fat is the other condition for which lipoedema is often mistaken, but pain and hypersensitivity to touch do not accompany normal fat or cellulite, much less the kind of dragging tiredness that characterises lipoedema. Many women also report mysterious bruising that appears with no apparent reason. Often, a diagnosis can take years.
The World Health Organisation has a set of codes, the International Classification of Diseases. Healthcare professionals use these codes as a standardised framework for recording, reporting and monitoring diseases. Lipoedema had no code until 2019, when it was recognised as a distinct disease. The lack of a disease code was a major obstacle for patients seeking diagnosis and treatment. It impacts everything from medical education – and, therefore, obtaining a diagnosis – to research to data collection.
A friend who finally secured a diagnosis has given up trying to explain to others about lipoedema. She says that once she mentions abnormal distribution of fat, she can feel herself being judged.
Nonetheless, there is help and hope. There is a thriving Irish support group, the
Lipoedema Support Network Ireland
. Properly fitted compression garments help many, while an anti-inflammatory diet can help too. Many Irish women opt for surgery. While most have to travel abroad, some have been reimbursed through the cross-border directive for treatment in other EU countries.
Mostly, education and compassion are needed. Doctors often inadvertently gaslight their patients because healthcare professionals do not know enough about lipoedema.
Sadly, not everyone is as confident as that dark-haired swimmer from years ago. Being stigmatised hurts. The next time you see someone you are about to judge for their body shape, whether it is this miserable condition or for other reasons, maybe try compassion instead.