10 things I Iearned since my lipedema diagnosis

By Tatjana van der Krabben

1.     Weight is not about calories in and calories out
This was a relief. Society may not get this, a lot of doctors may not get this yet, but I finally had it confirmed I wasn’t crazy or imagining things. Can you believe those yahoos actually had me consider the possibility that I was eating while sleep walking?!

2.     Calculating my BMI is a waste of time
BMI says exactly, well, nothing. It’s being discarded as a suitable tool for an ever longer list of exceptions, ranging from muscular people, to Asians, and from very short people to really tall people. They didn’t get the memo yet that it doesn’t apply to those with lipedema or lymphedema either. No doubt we would still miss more that shouldn’t be hassled with a 4^th grade math formula to define health. May I suggest we give up on using this for everyone else as well? It just isn’t serving the intended purpose.

3.     People call wearing compression ‘brave’
That would be because of their poor image, no doubt. Yes, most compression garments are ugly and a pure anti-fashion statement, but not necessarily. Eventually you get really clever with your choice of clothing and some compression wear actually looks nice. The rest is attitude. A lot of people, if not most, don’t notice the bit of compression sticking out from under my calve-length dresses. I seriously hated starting with compression, but I must say, when you benefit from them, that really changes your perspective.
When measured they commonly get you started with something hideous. Do ask what else they can offer.

4.      I do not like plus-size stores

        Eventually I needed to shop at plus-size stores for the better part, but they mostly offer clothes for apple-shaped ladies, not so much the pear-shaped ones. They also offer a lot of things that are less than flattering, or designs without lining or made with thin fabric that accentuate everything you don’t want highlighted. Despite these rather obvious misses, most plus-size fashion is way more costly than clothes in the smaller sizes. I hate to say it, but I’m not impressed with most plus-size collections.
It’s a sore point. I really miss being able to dress the way I used to, and the amount of time and effort I need to put into finding something I like is not helping! On a positive note: the staff in plus-size stores is usually super nice and helpful.

5.     The words ‘chronic illness’ are a conversation stopper
Don’t say I told you this, but if you ever need to get out of a boring conversation…

6.     ‘Managing your lipedema’ is mainly effort with an unpredictable outcome
Lipedema messes with you. What is part of your lipedema and what isn’t, what is a realistic prognosis, how much result can be expected? We just don’t know. Different people respond differently to the various types of recommended therapy. And for those of you who secretly - or not so secretly - think that those who say something doesn’t work for them don’t try hard enough, I have a little example that has nothing to do with following regimes, but everything with the involuntary response of our bodies to the lipedema.

Estrogen is believed to be a factor in lipedema symptoms. Take pregnancies. Some gain and swell, until they look like the Michelin man. Others remain stable, and others even lose weight: 10, 20, 30 or even 60 pounds. They just do. Therapy is the same. Some drop weight with a new approach, others remain stable and there’s also a group who will feel like crap and/or gain on your ‘successful regime’.

Based on today’s knowledge I would have to say that lipedema is unpredictable. Maybe we’re currently labelling 3 different things as ‘lipedema’ or will eventually identify subtypes. The whole medical perspective is still so wide open, that could easily happen. For now all I can say is that there’s no one regime that does the trick for all.

7.     Liposuction is not taking the easy route
It’s surgery. Surgery is never easy. Recovery isn’t exactly effortless or pain-free. It doesn’t cure lipedema either, which means your days of putting in effort to manage the lipedema are not behind you. So, no, it’s not the easy route. It can be a faster and/or more successful route to results. The obtained relief will make it easier to put in the required effort. That’s really nice, but doesn’t qualify as ‘easy’, I think.

8.     Good exercise is not about ‘feeling the burn’ or ‘no pain, no gain’
I was so happy to learn this. Just because I couldn’t do my old routines anymore didn’t mean I was out of options. I just needed a different perspective and stop abusing my body and putting it through routines that only cost me energy and worsened the pain.

9.     My best sources of information are Google, sharing among patients and DIY

This happens to anyone with a rare, or in our case rarely diagnosed and little known condition. Doctors really, really, really don’t like to hear this and strongly urge us to stop doing that. However, as lipedema is still largely being treated and described based on (varying) hypotheses, we simply have a gap or two (three, four…) in figuring out routines and best practices. Doc, if you don’t like me doing this, I get it, but then you’ll need to give me a protocol that covers all day to day issues with proven, accessible, which also means affordable or (partially) covered, options. Until then…

10.  Chronic illness changes your world
After putting others first for years, I was forced to put my own needs first. Talk about rattling the cage! l prioritized differently, lost friends who didn’t (want to) get it and get called lazy and/or selfish (behind my back). l also made new friends and eventually didn’t look upon my changed routines with a sense of loss, but a feeling of accomplishment. Yes, dear ladies, it’s pretty ballsy to swim upstream and stick with it. Chronic illness is not for the fainthearted!