After years of healing from chronic illness, Winnipeg nurse and musician getting back to what she loves
Posted December 27, 2023 5:54 pm.
Last Updated December 28, 2023 10:30 am.
After years of painful and invasive surgeries to manage a chronic illness, a Winnipeg woman is finally able to return to her work as a musician and a nurse.
Emma Cloney was diagnosed with lipedema in 2021 – an illness that causes painful fat buildup and swelling in the arms and legs, leading to immobility.
“A long surgical journey… there isn’t a lot of planning that happens in those stages,” Cloney told CityNews. “It’s just enduring. You get through the next task, through the next pain crisis, through the next surgery, next recovery.”
Cloney says her quality of life deteriorated rapidly with little warning.
“My life got very small, very quickly,” she recounted. “I pretty much lost my mobility, wasn’t able to walk more than 50 metres and had to be pulled on long-term medical leave and then long-term disability from my job as a nurse. I wasn’t able to find health care in Canada because my illness, lipedema, is not well understood.
“But through perseverance of finding my own path, researching the illness and finding the specialists in the world, I was able to get my diagnosis. (The doctors) all unanimously said, ‘you need urgent surgery in order to restore any quality of life.’”
Cloney underwent six surgeries over nearly three years – the first three in the United States and the following three in Germany.
“Getting an illness diagnosis, whether it’s a chronic illness or anything, it just puts the brakes on your whole life,” she said. “Everything that I was – I was a musician, I was a nurse, I had big plans, I was always working towards something – illness says no more.”
Cloney credits a kicksled for helping provide some pain-free movement and exercise over the last few years. Kicksleds are like cross-country skis without being strapped into boots, which is very painful for lipedema patients, and there’s a handle for stability.
She rented one after seeing a social media post from Sweden about it and it brought her much joy.
“We live in a climate where you gotta either find something you like about winter or you gotta get really good at leaving for the winter. So I use my kicksled as a form of daily exercise,” said Cloney, who’s planning on using it on the river when it gets cold enough.
Reconnecting with life before chronic illness
Cloney says the ongoing recovery process has allowed her to reconnect with the person she was before her illness.
“Every time a surgery is complete, and the eight weeks post-op happens, it’s like cracking through another layer of your shell,” she said. “You’re able to do more things than you were able to do before. You hurt less and just the same way that illness took me down in the first way and made everything so small, my treatment started making my world bigger and bigger and bigger.
“Now I’m at the phase of starting to figure out what step of my life I want to walk into, instead of in this endurance holding pattern.”
She’s getting back to things she loves – like work and music.
“I’m really excited to see how my experience with the health-care system on the other side will impact my nursing,” Cloney said. “I’m exciting to get back to work for the community. I’ve never been comfortable asking for or needing help. It feels really empowering to have been restored enough to get back into the stage where I offer the help.
“I feel like lipedema has changed the trajectory of what nursing will do and be for me and for this community.”
WATCH: Emma Cloney describes her first day back at work since she’s been treated for lipedema
‘Undercurrent of gratitude and joy’ in her music
Cloney also anticipates her experience with lipedema could impact her music – something she’s already beginning to see.
“I’m looking forward to the sort of defrosting process that comes from processing everything that’s happened and seeing what kind of music that might come from that,” she said. “So far the music that has started to come from it has this undercurrent of joy, which I wasn’t expecting. I thought there would be a lot of sadder songs or struggle or very emotional music. But there’s this undercurrent of gratitude and joy and excitement that’s coming through.
“Getting back to be on stages, even if it’s little bits at a time in the last while, has reminded me that that part of my life is not over.”
Cloney says she’s ready to give back to the community that helped save her. Since her diagnosis, artists and community leaders organized multiple fundraisers, including a benefit concert, to help Cloney pay for surgeries that couldn’t take place in Canada. She says without their help, she would have been stuck.
“I had been told that my life would be over at 37,” she recounted. “That I would be disabled, I just needed to accept it and that there was nothing anyone could ever do for me. And it turns out, that’s not true.
“So I’m very excited. We’re going to go back, we’re going to start being on stages again and I’m going to return to wearing green scrubs and bringing new life into the world and… who knows what else? I have choices now. I have choices I did not have before, so that’s exciting.”
New organization for lipedema patients
Cloney is involved in building a new grassroots organization, Lipedema Canada, which aims to support people in their journeys to healing. She says the organization is almost ready for its debut, and she’s looking forward to helping people across Canada. She says there is a representative in nearly all the provinces and territories who are ready to help with education, advocating for people who have been diagnosed and helping them navigate through the medical system.
“Next time we talk, who knows what area of nursing I’ll be in,” said Cloney, hinting at a possible future career path. “But I hear Canada needs specialists that know a lot about lipedema, and I happen to know a nurse that knows a lot about lipedema now.”
Cloney’s seventh and final surgery will happen this time next year in Germany.
“It’s really emotional for me to know that this will be the last time I see my health-care team in Germany,” she said. “It’s been a health-care experience like nothing I’ve ever had. I never felt like I had to qualify myself or explain my illness. When you meet here in Canada with doctors that don’t understand your illness, you do a lot of being in an educator role.
“When I go for care in Germany, because they are the world-renowned specialists in this, they take care of me. There’s a lot of medical trauma that can come from being chronically ill, and being with the German team has been such a safe and healthy and empowering experience.”
