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.

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.

Body Dysmorphic Disorder

Or, for the lipese,
Thousands of Breath-Stealing, Belly-Tensing, Eye-Crushing, Bulimia-Inducing,
Soul-Mutilating public humiliations ending with:
‘What A Wonderful World This Could Be’ Without You, Fatty!”

by Maggie McCarey

Such an event made my top three list: I was on a road trip to New York City one glorious October Day. I wore a beautiful new Eddie Bauer dark green, 3-button cotton sweater that accented my wild sea foam green eyes and my thick, naturally black Irish hair. Eddie B’s neckline led the discerning eye directly to my cleavage. I was fifty but I looked much younger, not a wrinkle or a blemish on my face. I was with my man who loves to knead by belly and squeeze my legs with a manly growl. I am girlish and sensual around him, even in age, an outside cat lured away from barnyard enemies, chosen by the farmer, sheltered in his safe love, and with fire in his heart to keep me warm. I like being an inside cat to someone who is blind regarding my unworthiness to be loved and to my emotions dancing with fear even at his touch.

That is my life, truly. Not a cloud in that blue sky on I-90, not a glimmer of foreshadowing in the perfect yellow pools of warmth flooding over me. (How do we ever forget that the potential and the power to instantaneously disembowel us exists in every man, woman and child within seeing distance on any given day, including holidays, family reunions, our own weddings and our parents’ funerals?) We pulled into a rest stop to go the bathroom. I was at the sink and mirror washing my hands when another person left her stall to stand next to me. I saw her through my mirror stop midway to look at something ahead of her in absolute horror. I looked to see what was so repugnant to her: it was another woman, washing her hands at the sink, wearing the same Eddie Bauer she was wearing. I love Eddie because his clothes fit me as I shape shift from 2x to M to L and back again. This girl was a dreaded PDinkie. I was size XBlimp. She squeaked for a second like a teeny tiny field mouse noticing too late that her day had grown dark, light forever obliterated by huge feathered wings. A few other women watched as she ran from the bathroom. They looked at her fleeting back and then looked at my reflection in the same mirror I now saw myself in: their mirror, hundreds of them, packed in like theatre-goers gawking yellow-eyed at a fat, hugely fat woman, double chin sagging below dull pig eyes and jowl- round face, and in nice clothes, imagine that, well-manicured hair and make up, designer jeans and purse. I could see in their mirror that I was suddenly as ludicrously costumed as Miss Havisham in Great Expectations who is acutely aware that her life (my day) is and has been for sometime in ruin.

Bout’now, I imagine yur sayin’ “That’s yur top three? That’s all ya got?” I am not finished. I stumped out to the car, head down, which sadly was parked not too far away from PDinky’s car. She was sobbing in the front seat, and shaking her head, “no” as her man quickly pulled tops, one after the other, out of a suitcase and held them up for inspection. I got into our car and looked at my farmer quietly reading me. Our day, in turn, was now dark below the merciless wing. Someday, he may see me as the worthless, overfed mouser that others see, but that day, he reached over, and calmed me in the same way he had tamed me, one big Russian hand squeezing his strength into my dainty royal paw. No words. No. No. Later, he would rub my belly extra hard or grab my butt at the kitchen sink. I would push him away and feign indignation but for now, one squeeze and I was redeemed. This event is one of my top three Thousands of Breath-Stealing, Belly-Tensing, Eye-Crushing, Bulimia-Inducing, Soul-Mutilating public humiliations ending with: ‘What A Wonderful World This Could Be’ Without You, Fatty! because it drove home forever the terrifying fact that those who love us as we are have to be extraordinarily strong against the current of hate that swirls around us even on the most sacred of high holy October days.

From Great Expectations by Charles Dickens. Finn: That’s a big cat! That’s the biggest cat I have ever seen! What do you feed it?
Ms. Nora Digger Dinsmoor: Other cats.

BODY DYSMORPHIC DISORDER

I find the Mayo Clinic description of BDD to be the most comprehensive—lists.
http://www.mayoclinic.com/print/body-dysmorphic-disorder/DS00559/METHOD=print

There are two reasons I wanted to write about BDD. While some like to argue that lipedema at some point becomes primary with lymphedema, I would like us to consider, rather, that our disease may be primary stress hormone release, secondary lipedema, and thirdly lymph-compromised. I need to research this a bit more (and no this not the serious research I am working on), but the concept of hysterical legs is one that I could argue for experientially. I offer you a quick quote here:
The illness known as hysteria, sometimes called a conversion reaction, occurs when someone (who may or may not be normally "highstrung") reacts to severe stress by developing physical symptoms that cannot be traced to physical factors. Such people do not realize that their symptoms are caused by hysteria. They, and usually their families and friends, simply assume they have been afflicted with a genuine physical disorder. The problem is often of a kind that helps the person with hysteria to escape from a stressful situation. For example, if you see a terrible accident where you work, you may develop a weakness of the legs that prevents you from leaving home the next day or even for much longer.

http://www.streetdirectory.com/travel_guide/112853/medical_conditions/hysteria_diseases.html

If we considered that we might be genetically predisposed to being “highstrung,” and that we might pack that kind of stress in our legs, it is possible then that stress(cortisol) could be primary, not to the cause of lipedema, but to its severity and to “bursts’ of weight gain that seemingly refuses to go away. I can tell you now, I have never had a stress headache. My stress is carried in my legs to the extent that when I watch a show with the slightest bit of anticipation, I pumped cortisol to my legs. My nightmares as a child involved my legs freezing up on me when a stranger chased me, and in 2002, my legs literally froze for 3-4 months, after a particularly stressful situation. When I get out of a car after an okay drive in the passengers seat, my legs are tight from living my stress from the waist down as I apparently help the driver maneuver the drive.

Of course, we have BDD. Every time we are slammed, shamed, humiliated, weighed, we exhibit BDD. I call our obsession with appearance culturally forced, enforced, and reinforced narcissism. Darlene Lykins Kedslie and Rin Tapia summed BBD up in a recent lipese challenge forum.

Darlene: Somewhere along this path we are going to need to admit that we are in an abusive state with society. We have all the telltale signs and this is making those stress hormones just run riot. I try to do some sort of deep breathing when I am out and relaxation but the tension of just being out pumps the cortisol. Stairs, chairs, doors - just getting in and out of the car in the parking lot - grrrr. I can feel the fight or flight taking over. BP goes up, heart races etc. This was the same internal markers I had from being in an abusive situation, which ultimately leads to avoidance of the situation - only it is hard for us to do so. So if we are under this metabolic stress from "poison" foods and then you are under abusive stress from society add to that the stress we are conditioning ourselves to be under because of our "failures" ... is it any wonder we get extreme cortisol rushes, adrenal fatigue and general chronic fatigue?

Rin Tapia: My dear, you hit a giant nail right on the head. For years I have panicked at the thought of public venues chairs, doors, people. It was a nightmare waiting for me when I walked through the door to my house. I felt like the staypuff marshmallow man storming NY in Ghostbusters and I became that image. So there I was in my abnormal Pysch class during my associate level studies and the professor was addressing body image and anxiety. She got into how when we perceive ourselves to be monsters we become these monsters and she addressed the hormonal imbalances caused just by our thoughts. I was stunned I had been abusing myself for YEARS not to mention every restaurant that had tiny-armed chairs; every building with narrow doors and every person who sneered my way had helped with that abuse. 


Darlene: I am just now trying to face these issues. As an introvert I have many coping skills to stay way from this thing we call life yet something nudges me to move into, or back into, life. Terrifying but necessary.
What I am trying to say is that the thing that makes us ill might be a catch-22. Stress causes us to send cortisol to our legs, our legs swell: Uh-oh inflammation. More cortisol, please. Life becomes harsher. Life becomes more difficult. Life become crueler. More stress. More cortisol and more stress and more cortisol and more stress and packing it in our legs.

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'.