Irene’s naked truth about lipedema

By Tatjana van der Krabben

Recently Irene Captijn started a website to raise awareness for lipedema. I’ve known Irene for some time and have worked with her on another lipedema awareness project: the Dutch lipedema film We want to keep moving. Like she had her heart set on making that film, she was passionate about this website. She had my attention in no time with a beautiful picture of her in UV body paint, a creation by Liliana Hopman, with the slogan: Are you brave enough to see my naked truth?

Time to have a chat with this amazing lady about her new project!

How did you discover you have lipedema?
Unfortunately it took a long time before I found out. I was always a little heavy. All my life I’ve been dealing with my weight and my being overweight. I saw one dietitian after another, but they always told me the same: “I don’t know what it is; your diet looks fine.” And so on. I had an obvious pear shape; the excess fat was all on the legs and hips. After my two pregnancies I couldn’t fit into regular pants anymore, not even plus size pants. I stuffed my legs into self-made, wide-leg pants and I can’t even sew!

One day, in the school’s playground, a mother approached me and gently brought up that her mother-in-law had legs just like mine and that she had lipedema. After I returned home I immediately googled that word and found Tilly Smidt’s website. My legs were exactly like the legs in the pictures I found on that website. My family doctor was not convinced and assumed it simply was a name someone had come up with for fat distribution that described a pear-shape as opposed to an apple-shape, nothing more. Luckily, my doctor was willing to refer me to a dermatologist who gave me a diagnosis on the spot. I was actually happy about the diagnosis. There was a reason for my shape. It wasn’t lack of effort or discipline that caused me to be overweight. Unfortunately that happy feeling didn’t last…

Where did you get the idea to be a body paint model?

I do notice my health is taking a turn for the worse, despite everything I do to manage my lipedema. But the most important reasons for my activism are my daughters and the fact that they, too, have lipedema and already in an advanced stage. My brain is on fire for the cause because I feel someone needs to shout out for attention. It’s not really in my nature to be the center point of attention, but when it comes to lipedema I’m very passionate. 

I’m sick and tired of being labeled fat and lazy by the doctors I encounter and that they refuse to treat me ‘until I start making the effort and lose weight’. To a degree I get it; I work in healthcare myself and I, too, was raised with the notion that being fat is all your own fault… Society sees me as a fat woman who really let herself go, but the feeling of injustice in this matter sticks and stings, unfortunately. I’m so ready to be finally met with a some understanding and insight. If raising awareness could be done at a larger scale, somewhere a group of doctors could get their wake up call from it and start focusing more on the causes of lipedema. At this point we don’t even know what the cause is! Research is incredibly important and unfortunately research is currently being conducted at such a small scale. There are so many women who need help NOW.

I always said I would even go naked if that’s what it takes to get attention for this miserable condition. And that opportunity is exactly what crossed my path: at work I met a young lady who spontaneously started to talk about her mother, Liliana Hopman, who placed third in the 2015 global bodypainting competition with UV body paint. She showed me pictures and BAM…the idea was born.

You created a website about lipedema. What kind of information can people find there?

I’ve worked as a doctor’s assistant for years. I’m well aware of the perception of most doctors: 10 calories in and 50 calories out is the road to weight-loss. Period. There is no other way. When too heavy you overeat and exercise too little. There are no other options in their mindset; it’s what they were taught. Through my website I want to offer different information. It’s basic and limited to a description of lipedema, where to get diagnosed and information on self-management. I limited myself to bit-sized information on purpose: doctors are not interested in reading lengthy texts to start out with. Especially not about women dealing with excess fat. After all, they assume to already know the answer to that problem. By keeping it short, odds are more in your favor they’ll actually read the information.

The site links to the more elaborate websites that are already around. That way you can get to more detailed information if you like. The website is also for women who believe they may have lipedema. I’m aiming for a short, accessible website, keeping all the information in one place and the opportunity to go more in-depth by clicking the links to other websites.

 What do you hope to accomplish through your new website?
Awareness! At some point the earth was believed to be flat, right? Perception can change and knowledge can expand! Well, big legs (and arms) are not always the result of overeating and laziness. This notion needs to sink in. We need our own Pythagoras among doctors to prove this, who could help open the eyes of other doctors to another reality.

If the website would inspire 1 family doctor to refrain from labeling his or her patient as obese, but keep an open mind and refer that patient to a specialist, I would consider my 'nude mission' to be a success. I also hope that women who do not know yet what is wrong with their legs, or women who do know, but want to inform others, will use the information on the website.

Most attempts to raise awareness in reality evolve around informing friends and relatives of patients. You would rather target doctors. Can you tell us more about that?

Informing your own circle of friends and family is incredibly important. But like with our Dutch film, if you’re not careful, you keep targeting the same circle of people. Who takes time to look at that film? Those most likely to are the patient, their relatives, a neighbor, a friend, possibly a few therapists. But how do you go from there? If you take that route and target your own circle of friends and family via social media, specialists won’t see it, family doctors won’t and so forth. What I’m actually hoping for is that the bodypaint will provide a different angle and attract a new audience and seduce them into checking out the website. I feel it’s art. Let me rephrase that: it is art! I’ve started out promoting the website via Facebook. I do also intend to promote the site through different channels in the future; I’ll get to that later.

Should people be interested in collaborating with you or offering their help in some way, can they contact you?

But of course they can and yes, please! I can’t do this alone. I’m open to ideas and collaboration and possibly to a sequel to this bodypainting project. Sharing the website also helps a lot, of course. The site is available in both Dutch and English. This is the link to my contact details.