The hidden impact of Lymphedema

Sharing the mental and emotional effects of a physical disease for World Lymphedema Day 2019

It’s been two and a half years since my Lymphedema diagnosis, and I’d like to tell you I’ve adjusted and adapted and everything is hunky dory. But it isn’t. I have a good routine, my swelling is well controlled, and I look almost normal, but there are days when I feel anything but.

I’m am backed by a community of “lymphies. “Some of them are far more physically affected than I, while some are triathletes and marathon runners. All deal with the mental and emotional challenges on a daily basis. I glean inspiration and support from all of them. But anyone within the community will tell you, LE morphs your entire lifestyle and understanding of yourself.

Here are a few things that inevitably shift when you’re afflicted with LE:

Time and money

Maintaining good health and controlling swelling requires a coordinated effort of wrapping, compressing, brushing, pumping, and very precise care. It entails a toolkit of tights, velcro, special socks, kinesiology tapes, toe caps, lotions, and more. All of this takes time and money that simply weren’t a consideration before. You buy a 3-pack of socks for $10 at Target – I buy a $120 pair of tights online, that have to be line dried.

The medical interventions that are known to be the best treatment – namely, compression – just aren’t covered by insurance. For those of us lucky enough to have great insurance, seeing our therapist is an expensive specialist appointment. For many, cellulitis can mean hospital stays – devastating if you have no insurance coverage. LE is a sink for resources.

Discomfort and pain

Each new day is a melange of aches and pains. Often, I stretch in my sleep, something pops in my LE foot, and I spend the rest of the night in pain. Not to mention the unique brand of torture a bend in your compression can cause in your joints. Slow, long, meetings are trying enough, but have you sat through one with an expensive nylon tourniquet squeezing a limb to its bursting point? I have, on the regular.

Fatigue and lethargy

Granted, before LE, I was not a parent and I was younger – it’s hard to say with any authority why I’m so damn tired all the time, but my friends in the LE community experience similar fatigue. Walking around all day with bloated limbs feels like swimming – imagine having to swim to the supermarket, taking the kids to school, waking up to potty at 2am after your ankle pops and radiates pain. You’d yearn, just for a day, to be back on land. And similar to spending a day at the pool, you’re left dead tired.

Social awkwardness and avoidance

Hey, let’s have a pool party! It used to be the impetus for a great day and a sunburn-well-earned; now, it’s cause for panic. Do I wear my tights in the pool? Do I sit on the edge while the others swim because I don’t want to deal with the choreography of squeezing into and out of tights at my friends’ houses? Will I collapse in a sweaty puddle in the shade? My favorite band is doing an outdoor concert in the 115 degree Phoenix heat? Count me out! Brunch and mani/pedis? I can eat, but I’ll hang out beside you while you get your feet done…? Um, awkward. Maybe I’ll just stay home. I’m tired anyway.

Disconnectedness from self

I know what I used to weigh, which was 25lbs south of what the scale says now. I have no idea what my new legs contribute to my weight. In the past, I would beast it at the gym, and work myself into a sweaty, blissful stupor every night until I got back down to “me” but damnit if I’m not tired, and would it even work? Nothing else seems to work. Most days I feel like a stranger trapped in someone else’s marshmallow body.

And my sense of style, with LE diagnosis, hit a hard reset. My already very athletic legs never met pair of skinny jeans they wanted to be friendly with. My wild and free toes were never before held captive, but now a little squeeze of a sneaker keeps them compressed. And my 25lbs of extrafabulousness is moving me every day closer to mine and Sam Smith‘s shared goal of wandering the planet in kaftans and huge sunglasses. In short, I’m still figuring out my new sense of personal style.

Fear of the unknown

I used to say, “Whelp! It can’t get any worse.” Now I know it can always get worse, and I don’t dare utter those words. With LE, we have to be careful of the unwanted injury, bugbite, or other infection that could go systemic way quicker than in “normal” humans. One or two LE limbs could easily spread to the trunk, other limbs or even the face. The list of what-ifs is huge. Just gotta keep trekking.

It comes and it goes

The bad news is…well…just about everything here. The good news – there’s lots of good too. But mostly, I get a constant and oscillating confirmation of both my inner and outer strength. Everyone has “a thing” – a heart condition, eating disorder, mental condition – this is my thing, and I’ve been able to help some people by talking about it. For that, I am incredibly grateful and encouraged.

How you can help

Education: First and foremost, the LE community can always use a healthy dose of empathy. Please educate yourself about Lymphedema – there are some amazing resources from Lymphedema Treatment Act like the succinct and awesome poster below, or check out my resources page for other great LE advocacy and blog sites.

Advocacy: Please sign the petition to designate “LD Awareness & Cures” as the 2019 World Health Day campaign for the World Health Organization (WHO) and help spread the word.

Understanding: There are more of us out there than you’d know. When you see someone with swollen limbs, don’t immediately make assumptions and hold back on judgments. And if you care about someone with LE, be there for them.

Feel free to jot me any comments or questions below, and thanks for reading!

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