Somebody Told Her She Has Lipedema and Now She’s Upset

Some stranger on Facebook told her she has lipedema, and it turns out that stranger was right.  And now she’s upset because she was OK with how her legs looked.

This is the last few paragraphs of the article:

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.

Here’s the thing about lipedema, which this journalist seems to not understand at the moment.  It’s not about being OK with your legs.  It’s not a cosmetic issue at all.  It’s a progressive condition that can absolutely destroy the lymph system in your body with the pressure.

To be honest, if it were only pain or legs getting so big that you lose mobility eventually, I wouldn’t say that this could be a very dangerous condition.  However, when the possibility of lymphedema looming over your head? The sooner you know about the consequences of living with this condition the better.  Same with getting liposuction.  The sooner the better.

Now, this isn’t to say that every woman is going to have lipedema to the severity that I, and a lot of other women have it.  Not every woman will get to stage 3 or 4.  Not every woman will see progression and not every woman will get secondary lymphedema or lipolymphedema out of this condition.  Every woman is different, every woman seems to progress differently or not at all.

However, it’s a possibility.

If it’s a possibility, do you really want to get to the point where you could have been warned about it but end up having to:

  • Wear compression the rest of your life?
  • Get MLD (manual lymph drainage massage) daily or weekly?
  • Having to wrap your limbs in bandages?
  • Having to spend time in a lymph press?
  • Having to worry about every bug bite or scratch becoming a nasty infection?
  • Getting blisters from the lymph fluid coming to the surface and hoping they don’t burst and become infection?
  • Watching every little infected bug bite or scratch to make sure it doesn’t become cellulitis?

If I could go back to my early 20s and know the edema I was experiencing was in fact secondary lymphedema due to lipedema, I certainly would have wanted someone to tell me.  Then I wouldn’t have had to pay for 7 liposuction treatments only to be left with chronic lymphedema in the wake of eradicating lipedema.

It’s not about being OK with your body image, it’s about knowing that you need to take care of yourself before the condition gets out of hand.  But, this is the view of someone who has gone beyond being ok with their legs and body image.

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