When the mental struggle with lipedema fails…

By Tatjana van der Krabben

Yesterday the hairdresser came to my house. There was my mother and the kids, and we did our Steel Magnolias-thing in my kitchen. Over the years, like a broken record, I’ve been sharing about lipedema and our hairdresser is now well informed. So when she picks up news regarding, she shares. We really needed to brace ourselves for what she had to tell yesterday.

A 20 year old girl in her town committed suicide because she couldn’t cope with living with lipedema anymore.

I don’t know her, but that doesn’t matter. These things get under your skin instantly. It’s incredibly sad.   

Over the years I found it hard to write about the mental struggle with lipedema. In part because I’m a silver lining kind of gal, in part because the thought of a silver lining keeps me going like a hamster in a hamster wheel, and in part because a focus on the mental struggle tends to only feed bias. Bias that lipedema is largely about appearance and how we feel about that. That bothers me, even though that aspect is real and valid.

When Joanna Dudek (SWPS University of Social Sciences and Humanities, Warsaw, Poland) came forward with her research on the psychological aspects of living with lipedema, a lot of us sucked air in between our teeth. It’s not like it wasn’t valid what she had to say, or not sciencey enough, or whatever. It was the focus on mental health. Lipedema sucks. I think we can all agree to that, but many of us fear this type of research and reasoning pushes toward the already very popular angle of teaching us coping mechanisms and providing us with symptom relief strategies, instead of trying to come up with answers and treatment options for the underlying issue: the lipedema. But the news I got yesterday does put things into perspective again, and knocked me right off my soap box.

The pressure of being unable to sculpt your appearance according to what society perceives as ‘pretty’, ‘attractive’ and ‘healthy’, while being told again and again that you can and should work on your appearance, is immense. We get to be labeled lazy, overeating, ugly, fat, lying etc. We get labeled by medical professionals, friends, family and complete strangers. And then a sweet 20 year old girl, fresh out of school, just starting her own business, with her whole life ahead of her, cracks. The hard way. The irreversible way. I can only imagine how she must have suffered until she couldn’t take any more. This sucks.

Dear doctor, can I make a wish?

By Tatjana van der Krabben

It’s June. That means it’s Lipedema Awareness Month. For me that’s a time to see how far we’ve come and where we still need to get to. I’m greedy and needy, I know. I want research, the kind that helps us learn about what lipedema exactly is. I want more informed doctors, a better prognosis for patients, early detection all around, more effective treatment options and better access to treatments.
I know that takes time, so that would be mostly for the next generation, but I’ll take it. I want better coverage for treatments by health insurance companies, too. Because, frankly, this unproven thing is getting kinda old. And so is that assumption that it’s about cosmetic issues. We’re not that far back in the lipedema dark ages anymore. Seriously, read up, people. And while I’m at: treating us with lymphedema and obesity protocols should equally be abandoned as a thing of the lipedema dark ages. Come on, give me a little renaissance here, doc.

But for all of that to happen I would need to make another wish, dear doctor. I feel it’s essential. So may I squeeze in one more request? Say what? I’ll take that as a yes, if you don’t mind.

Lip means fat and edema means fluid. I know every condition needs to get a name and this is what we got. But that shouldn’t mean we can’t look beyond the semantics of this thing, right? Because despite the fact more symptoms have been brought forward and get a mention here and there in case-based literature, most attention still goes to either the fat or the edema we carry around. We even have doctors specializing in treating the one or the other, even though we deal with both symptoms at the same time. And some.

Lipedema has more symptoms that get frightfully little attention. I can’t give you a list, because there is no acknowledged comprehensive list. There is no consensus on which suggested symptoms exactly are part of lipedema and which are not. Isn’t that a little weird 70+ years after acknowledging the existence of lipedema? Come again? I’ll take that one as a yes, too.

We need this consensus. Badly. When only a handful of specialists are aware muscle weakness is a thing with lipedema and bother to look into reactivating the patient safely, most of us strike out. Leaving us either with taking this symptom for granted or forcing us to work on remobilization without professional care and input.
Our worn knees don’t get replaced or treated otherwise, ‘because we’re too young’ or ‘too fat’, completely ignoring the lipedema component in the process and the fact that they are condemning us to further loss of mobility with this verdict.
I’ve seen specialists argue low levels or malabsorption of certain vitamins and minerals is a typical lipedema-thing we should get checked out after diagnosis and other specialists calling it pretty much a myth and the occurrences of malabsorption among patients a coincidence.
I’ve heard specialists argue we should stay clear of birth control with hormones or hormone replacement therapy as it would aggravate lipedema, and others, when asked, saying that’s not proven nor did they ever notice anything like that in their patients.

These are only some of the dilemma’s and hurdles we face. We’re talking quality of life here. Some grip on our prognosis. A chance of a better prognosis, if we manage to get things right, best as possible. Do what is right for our lipedema and, yes please, do it with proper, covered medical help, instead of DIY’ing ourselves through this. That all starts with a better understanding of lipedema, and trust me, that goes a whole lot further than ‘fat’ and ‘fluid’. True: you can’t whip up valid and substantial research. I understand, but there IS data to give you a head start. How about that.

So can I ask you something, dear doctor? Just have a look at the results of the surveys that patient organizations have compiled and spread among their members. There’s a goldmine worth of information and leads there. Just waiting to be used, researched and, if applicable, acknowledged.

There have been surveys by Lipoedema UK and the LIPV (partly in Dutch), among other.

Come on, doctor, make my month.