The focus of the lymphedema narrative is often on female patients; lymphie men are out there, but we just don’t hear their stories as often as we do women’s. Why is that?
Early into my tenure with LE&RN, a therapist told me about all the men who suffered from lymphedema. She then said, “And you’ll never meet them.”
She went on to mention the incidence of primary lymphedema in men where the lower extremities are affected. She talked about secondary lymphedema brought on as a result of treatment for prostrate cancer. In both cases, she said men were inclined to zip up both their pants and lips. It’s a hostile world for people who are different, and hiding one’s lymphedema has been a preferred course of action for both men and women when possible.
Enter Jake Miles. Jake was present at the LE&RN Walk to Fight Lymphedema and Lymphatic Diseases in New York City last year when they announced their Face of Lymphedema Challenge, and he’s recently submitted a video to the campaign.
He decided to share his story via a performance he gave at a class at the Magnet Theater in New York: “Something really shocking happened to me when I was twenty-five,” he begins. “I lifted back the covers and . . . my scrotum had swollen to the size of a grapefruit. And I was terrified, and I was partly scared because I had a feeling I knew what it was.”
He goes on to explain that he’s had lymphedema since birth but, at sixteen, he stumbled across an ad in the paper advertising lymphedema services. Despite never having heard the term “lymphedema” before, he responded. The ad turned out to be for a clinic specializing in the German teachings of manual lymphatic drainage, wrapping, and bandaging, which Jake quickly adopted into his daily routine. The swelling in his legs was considerably reduced, and it seemed as though his lymphedema was finally under control.
“Then,” Jake says, “Twenty-five. Grapefruit.”
Jake goes on to talk about how he coped with the progression of his lymphedema, and how it affected everything from his clothing options to his self-confidence and dating life. The candid and often humorous way that Jake talks about his life with lymphedema is both refreshing and relatable, not just for other lymphies but for anyone who struggles with feeling different. His speech had me totally captivated because I was so struck by how much of what he was saying were things I had felt or experienced myself, and not only that, but how validating it was to hear those things being said out loud.
“I have lymphedema,” he announces towards the end of the video. “I have a giant, swollen scrotum . . . And I’m pretty kickass.”
Hey, Jake—we think you are, too!
I’m a guy, and I have lymphedema. My primary lymphedema is only really expressed in my legs below the knees. There’s nothing remarkable about my balls, for better or worse. I have shared information about my condition with several people, but I don’t share it with everybody. Here are the reasons I don’t:
1. My condition really isn’t that bad. According to me. I have been hopitalized three times for cellulitis in my left leg, and now I wear custom, knee-high garments (a.k.a. “socks”) on both my left and right legs. I often wear a nighttime sock on my left foot (at night). Is it “serious?” Yes. Is it “bad?” No. It doesn’t really affect my lifestyle at all.
2. Having lymphedema doesn’t affect my lifestyle. This is due, in large part, to my lifestyle. The only clothing choices it ever effects is in shoes. Three layers of sock (two thick custom garments around the foot plus a normal sock) on my size 14 feel creates many problems trying to find shoes that fit. The socks are part of the problem, but the size 14 feet is a much bigger one. I never wear shorts, never wear sandals. It’s not my lymphedema, it’s me. I don’t like to wear those things. Jeans fit over my legs and socks just fine. If I go to the gym, I sport the socks. Compression clothing is now so popular with people who don’t need it, I fit right in.
3. Other people with lymphedema seem to have it much worse than me, and I don’t want to take anything away from the legitimately tough time they are having by whining about how hard it is to find shoes.
4. Most people just don’t f***ing get it. Typical conversation:
Me: “I have lymphedema.”
Them: “What’s that?”
Me: “[short explanation]”
Them: “[blank stares]”
Me: “[long explanation]”
Them: “You should see a doctor and have that fixed.”
Me: “There is no fix: there’s just treatments to keep it from getting worse.”
Them: “You obviously aren’t talking to the right doctors. There’s got to be a way to fix that. You are just being lazy about trying to find a doctor to fix that for you.”
Me: “Do you think my insurance company would shell out thousands of dollars to buy me socks every year if they knew of a cure?”
I also have similar conversations about why I should just buy more of the socks. People just don’t want to accept the fact that they cost $hundreds or $thousands per pair, that my insurance requires a prescription from a doctor, that my insurance will only allow so many orders per year, and that there are only two places on earth — both in Germany — who will make these things. The frustration of talking to people about it keeps me from bringing it up at all.
I always get, ” You should Just take a Water Pill”… uh, yeah, that’ll fix it, Not!
This is such a good video… I love the way he looks at his life… Humour if any kind always helps …
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