Lipedema is a progressive condition primarily affecting the distribution of adipose tissue in the body, causing disproportionate fat accumulation, particularly in the legs, hips, bum and sometimes arms. While adverse physical symptoms generally characterize it, it’s important to understand the link between Lipedema and eating disorders. It’s arguably one of the most important topics in the Lipedema community and isn’t spoken about enough, yet the connection between the two is so apparent.

Understanding Lipedema

Lipedema is often misunderstood and misdiagnosed as obesity, cellulite or Lymphedema due to its aesthetic similarities. It’s thought to be hereditary and affects predominantly women, leading to an abnormal buildup of fat tissue in certain areas of the body. The fat distribution, especially in the earlier stages, is often described as having a ‘pear-shaped’ figure or a ‘column-like’ appearance to the legs.

The Link Between Lipedema and Eating Disorders

A study consisting of 100 patients with Lipedema found that 74% had a history of eating disorders, 12% had periodic binge eating attacks, 8% had bulimia and 16% had anorexia nervosa.

When we consider that the average percentage of women with an eating disorder globally is around 10%, the glaringly obvious link between Lipedema and eating disorders becomes more apparent.

The constant cycle of restricting food intake for women with Lipedema derives from the fact that they struggle to lose Lipedema fat with traditional diet and exercise methods. Lipedema tissue does not respond in the same way as ‘normal’ fat, therefore we resort to extreme measures when we do not see the results we so desperately crave.

Contributing Factors

Body Image:
Lipedema can significantly alter a woman’s body shape and lead to feelings of self-consciousness and body dissatisfaction. This altered body image often contributes to the development or exacerbation of eating disorders.

Weight Management:
Women with Lipedema often struggle with managing their weight despite efforts to maintain a healthy lifestyle. This frustration may lead to extreme dieting or other disordered eating habits.

Misdiagnosis:
Lipedema is frequently misdiagnosed, leading women to seek alternative explanations for their physical symptoms, including turning to restrictive diets or excessive exercise to control their weight.

Emotional Impact:
Coping with the chronic discomfort and physical changes in the body associated with Lipedema can be emotionally challenging. This emotional distress may increase vulnerability to developing eating disorders as a way to cope with difficult feelings and emotions.

“Fighting the Family Hips”

For some women with Lipedema, their disordered eating began during early adolescence. When overt signs of Lipedema showed in Suzanne’s arms and legs at age 12, her parents – who were unaware of her condition – put her on a diet.

“There was a lot of talk about, ‘Fighting the family hips,’” said Suzanne, who now believes from her own diagnosis that her two sisters also have Lipedema.

Suzanne continued to restrict her eating into adulthood. “It got gradually worse and worse,” she admitted. At her lowest point, she was consuming only 800 calories a day.

Society’s obsession with thinness leads girls and women with Lipedema to starve themselves, or binge and purge, because simply eating a healthy diet won’t radially change the thickness of their limbs.

“I got smaller, but the issues I had with proportion in my legs and arms didn’t go away,” Suzanne clarified. “You could literally count my ribs, but I still couldn’t wear shorts without terror because of my ‘fat legs.’”

Like Suzanne, Olivia had no idea she had Lipedema when her brother made fun of her as a teen for having large legs. “It was the 2000s, so think legs in skinny jeans were in,” she said. “The looks at the time were flowy on top and tight on the bottom – the most uncomfortable and unflattering thing for a girl with Lipedema.”

Olivia had a short-lived eating disorder at age 17, and then maintained disordered eating habits for around a decade. This is unfortunately the case for so many women suffering with both conditions.

When Claire was in her early 20s, she would go for days without eating. “I didn’t know I had Lipedema when I was trying to starve myself,” she shared. “I just thought I was fat.”

Claire received a wake-up call when she fainted in the shower after four straight days of fasting. “I got spooked and went back to eating ‘normally.’” she said.

However, during her early 40s, she embarked on a series of fad diets and over-the-counter pills. “I got really depressed, thinking there must be something seriously wrong with me,” Claire admitted.

Seeking Professional Help

If all of this sounds familiar and you suspect you suffer from Lipedema and an eating disorder or someone you know does, it’s crucial to seek professional help. Both Lipedema and eating disorders are complex conditions that require specialized care and treatment.

Simply knowing they have Lipedema can help so many women in their recovery from disordered eating. Suzanne was in recovery when she was diagnosed with Lipedema.

“I understand now that my body has a condition that is separate from how much I work out or eat,” she said, noting this prevents her from relapsing. “Now my focus is on being and eating healthy, without so much preoccupation with eliminating cellulite.”

When Claire finally discovered she had Lipedema at age 50, she felt relieved. “I finally found what was so seriously wrong with me, why I could only get to a certain point in my weight loss,” she said. “I’m certainly kinder to myself. I don’t beat myself up like I used to. My depression lows aren’t as low.”

Olivia’s Lipedema ‘diagnosis’ came from a plastic surgeon, but she said it’s clear visually and palpating her legs that she has the condition. “I think just realizing I had Lipedema helped me develop a healthier relationship with food,” she stated.

Unfortunately for us, the lack of awareness and support for women with Lipedema makes diagnosis extremely difficult. So much more needs to be done. The healthcare system seems to have failed us. I hope Lipedema will be recognized as the life-altering condition it is in the coming years.

If you have, or suspect you have Lipedema, consulting with a knowledgeable specialist who understands the condition is essential for proper diagnosis and management.

If you’re also struggling with an eating disorder, reaching out to a mental health professional or eating disorder specialist is critical. Treatment may involve therapy, nutritional counseling, and in some cases, medical intervention.

Please remember, this is not your fault. In the majority of cases, Lipedema is hereditary or caused by hormonal factors.

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