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.

I have a beach body, just like everybody else

By Tatjana van der Krabben

In about a month me and my bits and bumps are hitting the beach again. In a tankini, without additional cover ups. That is neither good nor bad. Neither brave nor a display of lack of style. It just is the way I prefer to be on the beach. A minimum of wet fabric sticking to me. Feeling the breeze on my skin.  

I’ve done the pareos and the tunics in the past. It started that first vacation after discovering I had lipedema and still had to come to terms with the fact that, in my case, it was no such thing as ‘baby weight’ which could still be melted off somehow. Also, someone was kind enough to whisper into my ear that I should really look into cover up options (not my spouse!). It landed on fertile soil, being terribly insecure and frustrated because of my altered mirror image.

That trip I brought two tunics and two pareos. In the end I wore them only a few times. Towards the end of the trip I would only slip something on when someone wanted to take my picture. Otherwise I found the cover up strategy a waste of time and energy. It was hot. It didn’t fix that awkward moment when you need to take it off to swim and walk to the water in nothing but a bathing costume. You could decide to keep all sorts of clothing items on in the water, but I found it uncomfortable. Especially when exiting the water and having all that heavy, wet fabric sticking to me. The moment I realized I was crossing the beach several times a day with exposed legs, just to get in and out of the water, I really couldn’t be bothered anymore.

That was me being practical. I was still fussing and constantly checking what angle I displayed the least cellulite. Along came this fab local lady, at least 4 sizes bigger than me, rocking a pair of hot pants on the beach. She was having fun. She was not only confident, she was in her element. That was the last drop. To me, she was doing something right and I was definitely doing something wrong. I let go of most of the stress and self-consciousness right then and there.

I can really enjoy the moment now, even in a bathing suit, completely forgetting what I look like. In my mind I’m thinner anyway. That bubble bursts quite violently when I see myself back in pictures, of course. That’s still an issue. I still haven’t found a way around that, or rather how to push through that, even though a decade has passed since my diagnosis.

There’s also always that awkward first vacation day. That’s when I’m really self-conscious. Every single time I need to take the hurdle big time on the first day. The second day is better and by the third day I’m good. It’s my vacation, too. I’m entitled to enjoy myself just as much as the next person.

I love the ocean. I walk around the beach with the lines of my snorkeling mask pressed into my face and a dumb grin. Or I sift through the sand looking for shells or fossils. Let’s not forget swimming. It’s the one place where moving doesn’t hurt, my weight doesn’t hinder me and where I can move freely. If I swim al lot, I can get away with not wearing compression during the day, even when it’s hot.

The ocean makes me feel free. To the point I actually feel comfortable to engage in small talk with complete strangers. There’s no judgement. The snorkeling gear is leading, tall tales you can tell about what you saw in the water, there or elsewhere, and the fun and excitement that comes with that. Or comparing finds on a fossil-ridden beach. Just as long as I’m experiencing that beach-vibe, everything is easier, even though my legs and arms are on display. Not to mention that I tan in three different shades: not (legs, upper arms), slightly (face and lower arms) and a lot (neck and back).

A lot of it is attitude, positive energy and making up your own style rules. Unfortunately, so far my portable comfort zone only deploys on vacation. It would be nice to find a way to take that vacation vibe and mental freedom home with me, to enjoy it 365 days a year. I’ve still not found an answer to that, but I stand by it: I have a beach body, just like everybody else. All it takes it taking your body to the beach, and voilà.