“As a long time lymphedema victim, I have never met any other victims, nor have I heard from any other men in forums,” wrote Alan in a Facebook comment. “I find it quite depressing. I often wonder – am I the only guy with this bloody disease?”
A comment popped up in reply:
“You’re not. 😉”
That little nod of solidarity came from Josh, a young man living in England.
Josh has had lymphedema in his left leg for six years, although he wasn’t diagnosed until about three years ago. In that time he’s had one bout of cellulitis, which was so serious that he was hospitalized: “It very nearly killed me.”
The cellulitis forced Josh to come to terms with his lymphedema, although his peers still struggle to understand.
“I have found that everyone loves to have an opinion on my leg, but no one quite gets it,” Josh said. “No, I’m not ‘all better’ now my cellulitis is gone, and no, I can’t just ‘pop the leg like a spot.'”
“People struggle to understand the things that don’t affect them and lymphedema is no exception,” he added.
Lymphedema affects the way his leg looks, but Josh isn’t too bothered by that. What is a bit annoying is not being able to fit into shorts, trousers, or shoes anymore, but there’s an upside: he’s the only person in the office allowed to wear tracksuit bottoms to work!
Josh recognizes that there’s a female focus within the lymphedema community, although he feels he struggles more with differences of age rather than gender.
“Personally, I struggle to identify with the issues older generations may face when it comes to their condition, both men and women,” he explained. “Coming out of hospital after cellulitis, I was faced with the prospect of not being able to achieve the things that I wanted to in my twenties – for example, travelling. There was no real support aimed at younger people with the condition, never mind those that wanted to gallivant across the world to areas with less developed healthcare.”
For this reason, Josh recently set up a blog of his own called Left Leg First. There, he talks about his experiences with lymphedema and, more specifically, how to travel safely with it. (This November, Josh is off to Southeast Asia!)
His hope is to help other young lymphies feel supported: “I hated the idea of young people feeling like they couldn’t make a go of life because there was no one there to encourage them, or at least help them see things a bit more positively.”
“It’s such a different experience for younger people, not any worse or any better,” Josh said. “On the one hand you’ll have it your whole life, which is hard to digest. But on the other hand, you have years ahead of you to get into a routine that makes the condition as manageable as possible. It’s forced me to grow up, appreciate life, and appreciate other people’s conditions, too.”
When Michael’s melanoma spread and metastasized in the lymph nodes of his groin, he underwent two major surgeries to fully remove the left and right lymph nodes as well as fifteen rounds of radiation on his left hip and groin.
Soon thereafter, he developed lymphedema.
In the beginning, the lymphedema in Michael’s legs was manageable. He kept his swelling under control by performing manual lymph drainage at home while also working with his physiotherapist, trialing different compression stockings and wraps.
About a year later, though, he noticed a change: his right leg seemed to stay swollen, despite wearing compression.
“This puzzled my therapist, as my compression stocking should not make the swelling worse,” Michael said.
Together they realized that the radiation scar tissue over his hip and groin had built up to the point where the lymphatic fluid could no longer drain properly.
“The radiation made a solid cement over my hip, thus preventing flow,” Michael said. “By using a thigh high compression stocking, the band itself was directly on the scar tissue area, making the issue worse.”
Since the middle of last year, Michael has been a treatment guinea pig: from fascia massages to full leg wraps and night garments – you name it, he’s tried it. But Michael’s insurance only covers up to $250 per year, so his treatment is at a standstill. His only relief is a solid night’s sleep with his leg elevated, but that’s merely a temporary fix.
“Canada is lacking information and options for lymphedema,” he said. “Especially men’s lymphedema.”
Michael is still looking for answers and is currently seeking approval for surgeries outside of the country; Google and Instagram are his main sources for information and support.
“Here in Calgary, Alberta, there are not many options for lymphedema clinics covered under our health care system,” Michael explained. “It’s not considered a disability, yet being a welder in the oil and gas field, lymphedema makes my job very, very difficult.”
As a young gay man, Angus from Australia says he has faced distinct pressure to look and dress a certain way – a pressure that’s been heightened since developing lymphedema six years ago.
“I can’t wear the skinny jeans or other well-cut pants that are part of the uniform of gay men,” he said. “Jogger chinos are the only pants option I have because they’re baggy whilst remaining stylish, but that has limited my clothing options and overall style.”
“I’ve also had to get used to the stares that people shoot my way when I wear shorts,” he added. “I wear a black stocking on my left leg that is fairly noticeable.”
Living with lymphedema has made it difficult for Angus to gain employment as his options are reduced due to his inability to stand for long periods of time. It’s also impacted his ability to participate in activities like travelling or going to concerts because he’s not guaranteed to be able to elevate his leg if needed.
“[This leads] me to think that I’m missing out on doing some incredible stuff,” Angus said. “However, I’m taking it a step at a time, and on the odd occasion will force myself to go out and do stuff.”
Throughout it all, Angus is determined not to let his lymphedema prevent him from engaging fully with life.
“Even though it’s only been six years, I have become more confident about handling my condition,” Angus shared. “This has been through me accepting my condition and the acceptance and support of those around me.”
“It took a while to get to where I am now, but the important thing is that I did so.”
A stiff upper lip
“I guess that I have felt in the past that I’m the ‘wrong’ sex when it comes to knowledge and treatment of the condition,” mused Steve. “But to be honest, in my experience the difference in treatment between primary and secondary is even more marked [than the difference between male and female].”
Steve from England says that his lymphedema developed when he was fourteen years old, and it took another fifteen years for doctors to figure out what it was.
Once he began receiving proper treatment, Steve says he hasn’t felt in any way overlooked as a male patient. However, he does note there are certain expectations placed upon him due to his gender – especially when it comes to emotions.
“There’s a lack of support and an expectation from doctors that, as a stout fellow, you’ll be somehow more stiff-upper-lip about things,” he explained. “When in reality your feelings might be somewhat different.”
“There’s also a complete lack of knowledge and understanding from peer group,” Steve added. “Probably down to inability to talk about girly stuff like ‘feelings.'”
For Steve, there’s always been a bit of uncertainty in how to explain his leg to others, especially as a younger chap speaking to girls. (“Although it must be said that any failures in this area cannot be solely blamed upon one limb,” he clarified.)
One of the main issues he’s faced is finding clothes that comfortably accommodate his lymphedema, namely trousers.
“TROUSERS!” he scoffed. “My word, some of the clownish tents I’ve tried to look dignified in over the years…”
“It’s funny, except for work or odd nights on the lash, I never wear trousers – I just find shorts load more comfy, and have got used to the stares and questions,” Steve said. “There are many people who I might see fairly regularly when popping down the shops that will never have seen me in anything but shorts plus bandages!”