On Positivity and Inspiration Porn

One of my primary goals for blogging was to inspire other women battling this disease. But as it turns out, one can't always be positive and uplifting. As much as I wanted to only show the happy, sunny side of me and my battle, sometimes it's more honest to show all the sides.

Today's one of those days.

Sometimes lipedema is just so damned hard. Last night I looked down at my arm and nearly started sobbing right then and there. You see, I saw the beginning of a cuff. A cuff is what is known as the cut-off line between lipedema fat and the normal body. It's what gives the appearance of a person wearing a fat suit.

Cuffs are most commonly seen on the ankles, like in this photo:

But because lipedema can affect the arms, too, they can develop there as well. Before now, I thought I only had lip in my upper arms. In fact, I recently started wearing compression to manage the lip in my arms. 

It's not attractive, but it does the job. 

So last night, it was shocking to see the cuff on my wrist. I have lipedema not just in my upper arms but also in my lower arms. And it's not just early lipedema: I gently palpated my arms and felt the telltale nodules well down the arms. 

I choked back a sob.

My body is being taken over by this horrible tissue. This toxic fat is taking every part of me and making me unrecognizable even to myself. 

You may think I'm overreacting, but this is what lipedema looks like once it reaches advanced stages in the arms:

When I say this is a cruel disease, I'm not kidding. It's a horrible disease. We don't ask for it. We don't do anything to deserve it. Most of us have spent our entire lives trying to diet it away, but it doesn't respond to diet and exercise like normal fat. There is no cure. There are few treatments, and those that do exist are usually not covered by insurance. 

I try to stay positive to give others hope that there is life with lipedema. But I get discouraged when I realize that life with lipedema isn't always easy. That it's an uphill battle. The only hope I have right now is to raise awareness. To fight for recognition. To fight for coverage and for respectful treatment and for research and for a cure. 

Lipedema is a fat cancer that is destroying an estimated 3 to 11 percent of women's bodies. It is affecting their lives and their self-esteem. It is holding them back from doing all the things they could do. It is keeping them from living active, healthy lives. It is preventing them from enjoying their bodies and their families. We should be able to do something about this.

I'm not your inspiration porn. I am a fighter, and I will not let this get me down, but I need your help. Please help me raise awareness. 

Lipedema: A Get-Out-of-Fat-Free Card?

I've got a weird-shaped body. When I was younger, I had a very definite hourglass figure. It garnered a LOT of attention. Sometimes it made me uncomfortable. Sometimes it didn't. I still have an hourglass figure, but it's grown to cartoonish proportions. Even my chest has gotten larger (as they do), but my waist has stayed comparatively small (notice I said "comparatively" -- I admit that I've grown a bit around the midsection. I'm a 40-something-year-old woman who has had multiple children and a disabling disease. Give me a break here, won't you?).

See? Cartoonish proportions.
 We won't even begin to discuss what's going on in the leg region. 
Also, notice my awesome shirt.
Awesome shirt is awesome.

Maintaining a healthy weight isn't always easy at the best of times, and for someone with lipedema, it's all but impossible as the disease progresses. In fact, the average woman in stage three or four has a BMI over 40. That's morbidly obese. That doesn't mean we're all just porking out on every bit of food we see. In fact, those of us who have been diagnosed usually eat a really healthy diet because of our diagnosis, and we exercise. Our weight is so high because of the lipedema fat (which is extraordinarily dense) and because of the massive swelling that occurs anywhere the lipedema and, later, lymphedema is.

Now, all that said, back to proportions. I recently had an uncomfortable discussion with a woman who decided that she had lipedema. June is Lipedema Awareness Month, and I've been posting on my social media pages about it a lot. I really want women to learn about it and talk to their doctors if they think they have it, but I also want the general public to learn to recognize it so that some of the stigma is lessened. It is unbelievably painful to be labeled as fat and lazy when you have a disease that causes the "fat," a physically painful, debillitating incurable disease. A disease that is poorly understood, rarely recognized and has few treatment options. I can give you lots of reasons that fat, in general, should be destigmatized, but this is my blog about lipedema, so I'm going to stay on topic: We need more awareness so that sufferers don't have to be crushed under the shame AND the weight of the disease.

She couldn't really understand why someone with a round body and stick arms and legs probably didn't have lipedema. The fact is that body type really does come into play. Women with lipedema do come in all shapes and sizes -- that's a fact. But, generally speaking, the lipedema fat tends to accumulate on the legs first, so legs and hips tend to be disproportionately larger than the rest of the body. Even if they are not, they still have a characteristic shape and texture (lumpy, bumpy). She's having a hard time getting a diagnosis (seen one doctor and one specialist already and will probably continue seeing more in her search for her "get out of fat free" card -- seriously, that's what she calls lipedema). But that's probably because she (most likely) doesn't have lipedema.

For most of us, we struggle to get an accurate, respectful diagnosis because the disease is so rarely recognized in its early stages and so easily confused with obesity in its later stages. Personally, I find it offensive to call it a "get out of fat free" card. When you have lipedema, you don't get out of fat. You live in an ugly, painful suit of fat the rest of your life. You never get out of it. And while you may know it's not your fault and that it's a disease, others don't. So you get to live with their ignorant judgments, too.

It feels like an uphill battle sometimes.

Happy Lipedema Awareness Month anyway. We'll get there someday.