When the mental struggle with lipedema fails…

By Tatjana van der Krabben

Yesterday the hairdresser came to my house. There was my mother and the kids, and we did our Steel Magnolias-thing in my kitchen. Over the years, like a broken record, I’ve been sharing about lipedema and our hairdresser is now well informed. So when she picks up news regarding, she shares. We really needed to brace ourselves for what she had to tell yesterday.

A 20 year old girl in her town committed suicide because she couldn’t cope with living with lipedema anymore.

I don’t know her, but that doesn’t matter. These things get under your skin instantly. It’s incredibly sad.   

Over the years I found it hard to write about the mental struggle with lipedema. In part because I’m a silver lining kind of gal, in part because the thought of a silver lining keeps me going like a hamster in a hamster wheel, and in part because a focus on the mental struggle tends to only feed bias. Bias that lipedema is largely about appearance and how we feel about that. That bothers me, even though that aspect is real and valid.

When Joanna Dudek (SWPS University of Social Sciences and Humanities, Warsaw, Poland) came forward with her research on the psychological aspects of living with lipedema, a lot of us sucked air in between our teeth. It’s not like it wasn’t valid what she had to say, or not sciencey enough, or whatever. It was the focus on mental health. Lipedema sucks. I think we can all agree to that, but many of us fear this type of research and reasoning pushes toward the already very popular angle of teaching us coping mechanisms and providing us with symptom relief strategies, instead of trying to come up with answers and treatment options for the underlying issue: the lipedema. But the news I got yesterday does put things into perspective again, and knocked me right off my soap box.

The pressure of being unable to sculpt your appearance according to what society perceives as ‘pretty’, ‘attractive’ and ‘healthy’, while being told again and again that you can and should work on your appearance, is immense. We get to be labeled lazy, overeating, ugly, fat, lying etc. We get labeled by medical professionals, friends, family and complete strangers. And then a sweet 20 year old girl, fresh out of school, just starting her own business, with her whole life ahead of her, cracks. The hard way. The irreversible way. I can only imagine how she must have suffered until she couldn’t take any more. This sucks.