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!