The World Health Organization estimates that more 250 million people worldwide suffer from Lymphedema, yet most people know surprisingly little about the disease, and advice isn’t always good. I don’t define myself by this condition – it’s not a critical part of my identity – but on March 6, World Lymphedema Day, I try to join the effort to raise awareness and understanding for my LE brothers and sisters.
I suffer from Stage 3 Lymphedema – it’s uncurable at this point but is treatable. After multiple studies, the jury’s out on whether my case is primary (hereditary) or secondary (caused by physical trauma). Luckily, my swelling is controlled and doesn’t slow me down much anymore.
When I was first diagnosed, it felt like a death sentence. Therapists and doctors offered contradictory prognoses and confusing advice. A handful of years in, I’ve learned to sort through the static and discard untruths. From what I’ve learned, I offer you these…
Lymphedema myths debunked:
Lymph weighs more than blood
I was up nearly forty pounds from my lifetime set point weight when I read on a user group that lymph weighs more than blood. Phew! I felt relief. “That explains it. It’s not weight gain – it’s swelling.” So I looked in the medical journals and calculated the following: one gallon of blood weighs 8lbs 13oz, while one gallon of lymph weights 6lbs 12oz. Yes, I gained extra fluids with the swelling but not that much – lymph does not weigh more than blood. Waaah waah. Turns out, I was just eating too much ice cream.
You should wear long sleeves and pants to hide swelling
We all feel varying levels of comfort with our affected limbs and if you’re not ready to expose your legs or arms, or you simply don’t want awkward glances or conversations, that is your prerogative. It’s understandable. But you shouldn’t feel obligated to hide. In a previous post on Lymphie summer fashion, I suggest dressing to distract or disguise (mostly for personal peace of mind), but lately, I air on the side of airing my limbs. I am enamored by the fashion-forward outfits of Stile Compresso, and have been inspired to let my fabulous LE flag fly, so to speak. It’s led to some nice conversations, and it’s far more comfortable to peel away a few layers of clothing.
Wear heavy compression 24/7 – more is always better
My first LE therapist told me to help control my swelling, I should wear the maximum tolerable compression, around the clock. I was uncomfortable, and frankly miserable, most of the time. My second therapist, a respected authority in her field, told me to take cues from my body and do what I could without sacrificing my quality of life. If it felt like torture, I should reconsider or adjust. Now, my swelling is controlled with less compression, with some tiny breaks to let my legs “breathe.”
Do not engage in cardiovascular activities
My infamous compression-loving first therapist told me to avoid heavy exercise or any cardiovascular activities that would increase vascular dilation and invite swelling. All I can say is this is wrong. Thanks to Veronica Seneriz and the Lymphie Strong community of athletes and warriors with LE, I pushed my body to the limits and have been pleasantly surprised. Cardiovascular activity (always with compression) drastically reduces my swelling. Thanks to heaving training, I once again have a lattice beautiful veins on the tops of my feet.
LE damages your quality of life
It can. But it doesn’t have to. I previously shared some of the lows of Lymphedema as well as the upside. Quite honestly, there are peaks and valleys in my journey with LE. Does it slow me down? Sometimes. Does it stop me? Never. I’m stronger now than I was before I was afflicted. The most detrimental impact of LE, to me, is in my head. My body wants to be strong, and go, and enjoy life. If you can accept the condition, find workarounds, and keep moving, life goes on.
All this to say…
Listen to your body and don’t believe everything you’re told. Take proper precautions and wear compression. But you know your body better than anyone else – pay attention to how you’re feeling and how your LE is reacting, and make good decisions accordingly.
Do not let Lymphedema own you, or control your physical or mental health and wellbeing, or make you feel you have to hide. No one chose this condition – it chose us. The more we can talk about it, the more understanding and acceptance there will be on a larger scale. If you’re not ready, that’s okay too. Your community will be here when you are.
