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.

Taking Care of Us

By Christina Routon

Anyone who's ever flown on an airplane with a child knows that if the oxygen mask falls the adult is supposed to put theirs on first. If we don't, we're likely to pass out and won't be able to help our children our ourselves.

Women in general are caretakers and tend to put others first - their husband's careers, their children's activities, even their friends. But when is it our turn to be cared for?

This isn't about being selfish. I completely agree with being a partner, being a mother, being a daughter, being a best friend. I know all the sayings like "The world doesn't revolve around you," or "It's not all about you." But sometimes it should be.

As women with lipedema we can't afford to NOT take care of ourselves. If we don't watch our diet, do some form of moderate exercise, buy the compression hose (and WEAR them!), take our supplements and meet with our doctors what could happen?

Worst case scenario:

Our lipedema could get even more out of control - more weight gain, loss of mobility, loss of energy, more health concerns.

Then who will care for our children, partner with our spouse, visit with our friends?

We all need to take some time for self-care. It doesn't have to be a long amount of time and it doesn't need to cost a lot of money, but it needs to be a priority if we're going to beat this disorder and live our lives to the fullest.

So what can you do to take care of yourself?

1. Ask For Help. Discuss your needs with your spouse. What can they help you with around the house or with the children. If you're a single parent, meet with other single parents through your church or a community event or check out the Meetup website and see what's out there. Single parents can help each other. If you're a single person, discuss your needs with a friend or family member or see if there's a community program to help you with housework, transportation and other issues. There's nothing wrong with asking for help.

2. Support. I love our Facebook groups so much! There's a lot of support for just everyday life. Even though the group is online, I feel so many of these special ladies are my friends. Several ladies just met in person at the first lipedema conference held in Arizona. So make it a point to find support and advice, whether online or in person.

3. Eat right and exercise. I'm guilty of not doing this enough. Before I found out about lipedema I was at the gym every day for two years, living on chicken and broccoli, and got so discouraged with my results. Now that I know about lipedema and how the lymph fluid needs activity in order to move, I know this is important. That's why I'm making a new commitment to eating healthy (my choice is paleo / primal) and exercising 30 minutes every day. The difference is that instead of exercising looking for the end result (weight loss and, truthfully, wanting to look hot!) my goals are to gain strength and slow the progression of the disorder.

Let's make a commitment, today, right now, not next week or next month or next year, to putting these steps in practice and not finding the time but MAKING the time to take care of ourselves.

If you don't take care of yourself, who will?