health

"A stranger online told me there was something wrong with my body. They were right."

I don’t mean to offend you, but I’ve noticed your legs in a video online and I think you have a medical condition called lipedema. Just thought you should know.

When I first read her message in my ‘others’ inbox on Facebook, I laughed out loud.

Earlier that week I’d interviewed a celebrity for a Facebook live video, it was probably the height of my young career thus far. But the camera angle wasn’t the most flattering and I’d worn a short dress that day.

“You know you’ve made it when strangers online start sending you messages,” I joked to my partner – it was late at night and we were laying next to each other in bed.

But then I Googled it. And it wasn’t funny anymore.

Lipedema (painful fat syndrome) is an abnormal build-up of fat cells in the legs, thighs and buttocks, and sometimes in the arms, Google told me.

It showed me pictures of women's legs, distorted and covered in unsightly lumps, the same width from thigh to ankle. I watched videos of doctors prodding legs, squishing the 'abnormal fat cells' and watching indents form.

Diet and exercise won't help me, but lymphatic drainage massages could treat symptoms, said Google. Oh, and liposuction. I should get liposuction too.

In less than three minutes while my partner lay beside me checking his emails, my mind had fallen head first into a black hole of information that didn't make me feel good.

I pulled the top sheet over my legs, exposed in pyjama shorts. Then I burst into heavy sobs.

This woman's comment, even though I'd never met her and almost certainly never will, tugged at a raw nerve. Not because I was offended or upset someone had commented on my body. But because deep down I suspected she was right.

I've always had bigger legs, which my mum told me to blame 'the bloody Robinson's' on her mum's side of the family for.

But they were just my legs.

Yes, there were things wrong with them I wanted to change, but only because I didn't like the way they looked in shorts or spread out when I sat down.

But hearing there could be something medically wrong with them? I couldn't work out if it was better to know or if I would've preferred not to know at all.

Are there any circumstances under which it’s acceptable to comment on someone’s weight? The Mamamia Out Loud team discuss. Post continues after audio.

After letting these thoughts swirl privately in my head for weeks, I mustered the courage to ask my doctor about my legs.

Through choked tears I asked, "do I have lipedema?" She didn't understand what I meant at all - so I told her about the comment and the videos I'd seen online.

And just like in those videos, she put on some gloves and began feeling my legs.

"Does it hurt here? And what about down here?"

She kneaded the skin on the back of my thighs and calves for what felt like several minutes before washing her hands and telling me to sit down.

"How much does this bother you?" she asked me.

Before the comment, I would've said perhaps a five out of 10. Not that I would've ever brought it up with my doctor before. But now, my legs were all I could think about, all I could see when I looked in the mirror.

Then she said something that made me think.

"Your legs don't bother me. It's likely you've had this condition your entire life, that you were born with it and the women in your family have it to."

"What bothers me is how this has affected you mentally, I'm worried about your mental health. There are so many more important things to be worried about than your legs."

So the stranger was right. I do have lipedema. But if I've had it my whole life (genetics and your hormones play a role, my GP told me), why do I care so much now that I have a name to label years of insecurities with?

Taryn Brumfitt is the founder of The Body Image Movement. You can watch her advice for feeling better about the body you have below. Post continues after video.

I've had time to think about this woman's intentions when she saw a video of me online and decided to press send on that message that's since changed the way I look at my body.

I'm sure she was trying to be helpful, to provide the missing puzzle piece she presumed I'd been searching for. But I'm not convinced it was helpful at all.

All it's done is magnify something I'd already felt self-conscious about, but now feel there's no hope in changing because my legs have a condition I can't fix with hours on the treadmill or deadlifts.

But then again, I can seek treatment if I want now, because I can put a name to the problem.

Should we ever comment on other women's bodies, even if our intentions are well-meaning? Or would I have been better off never knowing at all?

They say knowledge is power, but it can also be crippling.

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Top Comments

Stacey Hipwell 5 years ago

As a lipoedema sufferer, I can honestly tell you I wish I knew sooner. Years of not knowing why I couldn’t loose and tone my legs drove me crazy. I even tried starving myself. My legs and arms grew and caused me to be bullied in my workplace because “I gave off the image of a lazy slob.” Yes my manager took me aside and said off the record he knew I was working hard but my personal image was off putting to others. I’m always well dressed...ask anyone, it was completely my size he was speaking of.
When I was finally diagnosed it was a huge relief to know it wasn’t something I had done or could control, but then the fear of not being able to control it set in. Was this my life? I set about getting informed about my options, I talked to specialists, joined support groups and read everything I could. I was in early menopause by now and my symptoms were going nuts. I had pain was loosing my mobility and was suffering other stresses on my body from the weight, but not the health types (no heart disease or diabetes etc). Thing is if I’d have only known what was wrong when I was younger/stage 1 or 2, I could have had treatment and begun wearing support clothing to help stop it progressing to this. If you don’t treat lipoedema it will eventually take your mobility. Trust me I’m living proof!!
In 5 weeks I’m going to have some super dangerous surgery to try and help me. It’s my last opportunity to try and turn back the clock on what damage has been caused. If it works it’ll be the first of a number of for me. It’s expensive, medicals don’t cover lipoedema, I want to be able to dance at my daughters wedding one day (she’s 21) and I’m only 46 so my life is not ready to be dormant.
Be glad you know and go find a good specialist (I recommend Dr Helen Mackie at Macquarie medical). Who will help you now and not say, they don’t worry me. Just because they aren’t too bad now, doesn’t stop the problem of progression. Most GPs don’t have the knowledge to know this. Please please look for more i


Zoe 6 years ago

I have something very similar called Lymphoedema. Instead of fat it’s lymph fluid that builds up in my leg. And I think if you hadn’t known about it, it could have gotten worse. At least now, while I haven’t seen you, I’m guessing it’s not too bad, it could get worse and harder to treat. I recommend getting a second opinion. Look into treatment. The medical world is forever changing and you never know when some new treatment might pop it’s head up.