Unsollicited lifestyle advice is harmful

By Tatjana van der Krabben

Unsollicited lifestyle advice – When you completely miss the fact that we were not sitting here idle, waiting for you to step forward with your insights.

Many not only miss this point, they hop straight to the guilt trip. We are supposed to feel bad, dislike ourselves and be more than ready to try the latest fad in diet or exercise. We are expected to jump to the opportunity no matter what the suggestion. As if it were a golden ticket to Willy Wonka’s Chocolate Factory presented by Mr. Wonka himself.

Chocolate… Where was I again?

Exactly. This is what too many people actually think. That I have (junk)food on my mind 24/7. That I haven’t seen the inside of a gym since the previous century. Neither is true. It’s unpleasant, to say the least, to watch a conversation skid and to find myself defending lifestyle choices and explaining again and again why I look the way I do. I shouldn’t have to. Not only that, it’s as pointless as explaining why my eyes are green and my feet are small. I simply have lipedema. It’s part of me – like it or not.

The truth is that we are the new smokers. Society thinks it’s okay to lecture us out of the blue. We not only deal with lipedema, but also with the ruling false assumption that body weight is all about calories in and calories out. It makes us automatically to blame for excess body fat, hence the mandatory guilt trip. It’s an unfair assessment which is unhelpful at best for those who are struggling to accept the way they look. By projecting their own (temporary?) excitement over a particular work out regime or diet they are much like a bull in a china shop, doing more damage than good. Maybe they mean well, but I will never be the one to drop 2-3 pounds a weeks, let alone several weeks in a row. Insisting they know a way around that is insulting. It implies I haven’t tried hard enough. And the saddest part? In their efforts to impose certain lifestyle choices I mostly recognize their own obsessions and frustrations regarding their body image being projected on me. Or a chance to shine with assumed moral superiority, which frankly is despicable.

It’s not only annoying. Much of the advice I get is plain wrong for me and anything but medically sound. It’s unbelievable that people are able to think they’re qualified to give lifestyle advice to a chronic patient, regardless the condition, based on something they read in a glossy magazine or seen on a sponsored TV show. If our doctors did that, there would be consequences for sure!

The insensitivity when it comes to the fat is mind blowing. So many people with lipedema (or obesity) suffer from depression, low self-esteem, a negative self-image and/or eating disorders. Yet, we are confirmed in our feelings: they’re labelled ‘appropriate’ for our current state and are meant to encourage us into a healthier lifestyle. By sending the message the plus-sized are not worthy is plain cruel. Change is not always on the table. Sometimes because of an underlying medical condition, sometimes because someone simply isn’t ready to take on the challenge and sometimes – tada – because they’re happy just the way they are.

Size is such a limited perspective. It doesn’t even define healthy living. Just look at Witney Way Thore from My Big Fat Fabulous Life: definitely plus-sized due to chronic illness, but also super fit and living a healthy lifestyle. I know some of us desperately try to prove we didn’t bring lipedema onto ourselves and claim we only eat very little, if not starve ourselves. I feel we shouldn’t have to defend ourselves. The fact that some of us are essentially starving themselves is horrible! Is that what it takes to ‘prove’ we give it our all?! That’s crazy! We should drop the apologetic attitude. We don’t need to accommodate their ignorance and justify fact. I’m done with that. This is how I feel these days:

Unless you’re a doctor with knowledge of lipedema, walk a mile in my shoes first, or zip it.

Rock your lipedema curves

By Tatjana van der Krabben

Valentine’s Day, the day of love and romance. Before you go over the final arrangements to give your love or loved ones a wonderful Valentine’s Day, I’ve got a big bear hug right here. For you. Yes, you! Of course you!

We’ve all been there: your body goes crazy and you don’t recognize yourself in the mirror anymore. Or worse: people rub it in how much you’ve gained and/or should lose weight. Stuff you can totally do without, to put it mildly. But where does that leave you? Is shopping still fun? Can you still be bothered to dress up? Is black your favorite color these days? Has your pretty smile left the building?

If so, it does not have to be like that. Megan Trainor is singing about junk in all the right places and gets praised for it. Nicki Minaj is flaunting what we are usually trying to hide. And what do you know: the perception of what is true beauty changes every decade or so. That’s right: times they are a changin'. Curves are back! So here’s one for you:

If Kim Kardashian can be revered for her booty, so can you!

Or your other curves, for that matter. She simply markets them as beauty and shows her curves with pride. The way she presents it, it just is not open for discussion. Result: plenty of takers. Got to give her credit for that.

It all starts with a little confidence and self-love and that is what I wish for you all this Valentine’s Day. I seal it with a virtual bear hug, because we all need one sometimes.

That leaves just one more thing:

Flip the switch & go with the flow

By Tatjana van der Krabben

For June Awareness we initially set up a suggestion box. Of course we were free to throw in suggestions of our own and Maggie came up with promoting self-love. That one matters big time, so we stepped on it. Tirelessly Maggie came up with a new quote, picture or clip every day with a little exercise attached to it.

My wake-up call telling me I still have a long way to go with respect to self-acceptance came with the exercise to write down what we stopped doing because of lipedema. I wrote down 'dancing in public'. I immediately felt like an idiot. Why would you stop doing something you love to do, while physically still able to do it? Why? Because of people staring? What they might think? Because you don't like the attention. Oh, come on! Time to flip the switch.

With my summer vacation booked I got ready or some serious R&R on the beach. So no drama about mentally getting ready. No: what does a woman need to make herself comfortable?

First a little something to read: Inferno by Dan Brown. But I also intend to bring my nerdilicious book on fossils. It's been collecting dust, but not by choice!



Next I figured I needed a new mask and fins for some serious snorkling. My old mask was leaky and my old fins looked like I wrestled with sharks. Comes from using them to cross pebble beaches and get passed rocks, so nothing dramatic. Although I did swim around sharks a few times! I went for fabulous pink ones. I'll be very, very sorry to use them on pebble beaches!




I wanted a free flowing summer dress. One of those cute maxi dresses that are now out there. I love those and they have their obvious benefits. I had some trouble finding a nice one in my size. While roaming the largest department store in my town for THE dress, I stopped in my tracks. I spotted a lovely pink dress. Pink. In-your-face-kind-of-pink. As I zoomed in on the dress I spotted a 'safe' blue version as well. Not free flowing, not exactly wallflower-proof decor. What to do? I decided to try it on. I loved it! I admit, I also tried the 'safe' blue one. And decided against it. Same dress, same print, but just lost its appeal in navy blue. That's how I ended up with a more figure hugging dress.

Please excuse the wheat belly in this picture. Lately I've made one exception after another due to stress and a busy schedule. I'm paying the price. Nothing a good vacation can't fix: a good swim every day and all the time in the world to pick my food. If you look at this picture you probably wouldn't have guessed I have lipedema. However, I originally come from an early stage 2.

The universe apparently intended to have a firm chat with me. The very week I decided I would dance the first opportunity that came along, I had a party. I had forgotten about that. Still, a promise is a promise. If you won't even keep a promise to yourself, what is left?

As it turns out they made it real easy. Totally my kind of dance music. Me and dance music go back a long way and it was pleasant to be reacquainted. If someone stared: I didn't notice. And I don't care!

All these events took place in little over a week. I was beginning to feel more daring. On Lipese Challenge* I made another promise: for this vacation I would not dig up an outdated bathingsuit, nor doubt myself in front of a mirror whether I could 'pull it off'. No, I intended to get myself a nice new tankini.

I tried a few different ones and ended up with a model in a rather tight fit. Realistically I had to focus on keeping the girls secure and decent. I'm not exactly flat chested. That's how I ended up with this model. The legs...stick out, regardless of the fit on your body. For a split second I was in doubt about the bikini bottom. But when considering going one size up, they told me I would lose it swimming. The shop assistants were brutally honest (about the girls' tendency to escape, the fit really, not my legs or size) when trying on different models, so I took their word for it. Bright blue: can't miss me.

All it took was someone stirring things up and a few positive experiences. Just like that. I had a chance to sleep on it and I'm not the least bit sorry I got a dress and tankini that follow my contours. I know I picked the right items. My final challenge for self-acceptance was having my picture taken for this blog. That's still a sore point. See the criticism I put in on my waiste? Well, I saw it through and posted that picture. Also, I see what I'm doing here. I'm leaving the fussing in this blog. It's a nice marker of my progress and what the next step should be.

I hope June Awareness month 2013 will be a lesson to myself on a bad day or during a bad week. There will be moments like that again, too. When a shop assistant is less professional and kind enough to point out exactly those things you don't feel comfortable about. Or someone will stare and you notice. Or something else. I hope I will realize again it's them, not me. Like they are all perfect...

*Facebook group by Lipese

Mirror, mirror on the wall…

By Tatjana van der Krabben

Mirror, do I see what you reflect? Probably not. Before the lipedema flared up, I was fairly thin. I could walk into a store and blindly pull out a pair of pants likely to fit me. Nowadays I have to check labels and am still in doubt. Apprehensive even, to try them on, for fear of disappointment in those brightly lit dressing rooms. I just don’t know. I look at pictures of myself, surprised of what I actually look like. Either bigger or thinner than imagined, depending on my mood or the trust I put in a certain outfit. Somehow, the dimensions of my physique won’t sink in anymore.

There are people out there either telling me or implying that I’m fat. It’s disappointing to be told you look so much better since liposuction. This emphasis on looks is so pointless. Like I can pick my built and genetic make-up. Was I unworthy before somehow? Less of a person? It’s otherwise also an uphill battle with doctors that lack understanding and want to name a number for your weight or body mass index before considering acknowledging your efforts to eat well.

This is a bad combo. Not realizing what you actually look like, where you truly stand physically, can make you a target for the weight mafia. This week I watched a personal trainer on television, coaching a person into losing an insane amount of weight in one year. Like a mantra he kept telling the viewers her weight loss was disappointing and that the scales don’t lie. Turned out the scales did lie: unlike most, she did not lose muscle tone in that insane schedule, but gained muscle tone. In another case the scales lied too: the woman had lipedema. But before a doctor came forward to explain what was going on these women were butchered, accused of cheating with their diet, not putting in enough effort with all that exercise. As if cheating with your diet two or three times can explain how you gain over a period of a couple of months where you otherwise apply their methods. Including working out many hours a week. Sure, that makes sense.

In the end in both cases a doctor stepped forward to explain why they did not meet the criteria at first glance. Care to guess how often a doctor does NOT step forward to explain your war with the scales? I was there for many years. Many of you were, too. It can become tempting to put a number from the scales on your self-worth, self-image, self-respect. There are so many lipese ladies out there with an eating disorder or having had an eating disorder in the past. It breaks my heart. Yes, anorexia too! On many of the forums a picture circulated of a woman, emaciated all over but on her legs. You can’t make the lipedema go away by endlessly reducing your calorie intake. But you can do damage to yourself trying. All the same, the scales will lie and give you a misleading number or body mass index. The scales can lie, but the mirror won’t. If your top half is all skin and bones, you are taking this too far.

The truth of the matter is, you can diet all you want, but your legs will remain lipese to an extent. An ugly truth, but does it make us less worthy? Of course not. Does is make you less attractive? No, it shouldn’t. Your appearance is so much more than your legs. If they show any respect, they will look at your face when engaging in conversation. When not so respectful, the eyes wander and they usually move south to bosom or butt. We can do without the idiots that judge us by our legs. It’s not you, it’s them.

And don’t forget to check out your assets next time you pass a mirror. Yes, I know, it’s about time I started doing that myself.

Note:
This is not an attempt to discourage you in your efforts to manage your weight, your health and your lipedema. Good results in terms of stopping weight gain, less edema, less pain and possibly losing (some) weight have been obtained by people with lipedema. From personal experience we favor a lifestyle with low carb, high protein, no sugar, no artificial sweetners and little or no chemical additives. Also often referred to as 'clean eating'.