‘I am trying to not let it consume me’: The rare disease that turned Michael Klim’s world upside down

Michael Klim’s emotions were swirling when he was inducted into the International Swimming Hall of Fame earlier this month. At a ceremony in Florida, the hulking Aussie joined a club containing many of history’s most celebrated swimmers, divers and coaches, including Mark Spitz, Johnny Weissmuller and his old training partner Alex Popov.

Klim, Matthew Mitcham and Jon Sieben were Australia’s latest honorees, in the footsteps of local luminaries such as Ian Thorpe, Fanny Durack and Murray Rose. Ground-breaking coach Ursula Carlisle joined her late husband Forbes on the list, too.

But despite his glittering career and collection of medals, Klim couldn’t shake a mild dose of imposter syndrome.

“I looked out at the room and you’ve got Rowdy Gaines, Mary T Meagher, Greg Louganis, Jon Sieben … you have these sporting legends and it almost felt like I didn’t belong there, to be honest,” Klim said. “But it was an amazing night.”

It had taken some effort to get to Fort Lauderdale but with his partner Michelle and parents Ewa and Wojtek alongside him, Klim relished the trip down memory lane. It was respite.

“There were a lot of things going through my head, and for a few hours it was nice to not have my illness on the forefront of my mind,” Klim said.

“I started to deteriorate pretty significantly, physically, this time two years ago. So I wanted to go because I don’t know what the future holds really. It is a pessimistic outlook, but it’s the truth.”

In 2020, Klim was diagnosed with a rare neurological disorder called chronic inflammatory demyelinating polyneuropathy, or CIDP. The autoimmune disease sees the body attack the myelin sheaths insulating and protecting the nerves, and has no cure.

With debilitating effects including muscle wastage in his legs, sensory loss in his feet and a struggle to perform everyday functions such as walking and even standing for long periods, Klim’s life in his home in Bali now centres around daily routines of treatment and rehab. He struggles to play with his kids, has stepped away from business interests and – walking with a cane and foot braces – even trips to the shops are a marathon effort.

The 45-year-old, who lives in most Australian minds as the muscle-bound swimmer playing air guitar after that famous relay gold at the Sydney Olympics, may end up in a wheelchair.

CIDP has rocked Klim’s world.

“My counsellor and I have come up with a strategy where I give myself an hour a day to feel sorry for myself,” Klim said.

“I can whinge as much as I want and feel down, but after that, then there are still a lot of things I can do and be functional and still have responsibilities as a parent and a coach and as a partner, and I can still do them effectively. I am trying to not let it consume me completely. But it’s hard.”

The first signs there was something wrong came in 2019 after Klim had surgery on an ankle that had been problematic for almost 20 years. It had led to a skewed gait and associated back problems, but Klim assumed he could rehabilitate the mechanics back to normal and rid himself of the aches and pains.

“But I noticed other things were occurring,” Klim said. “I couldn’t do a calf raise, for example, and I had weird sensations of tingling in my thigh and it sometimes felt like someone was pouring hot water down the back of my legs. With pin tests, I couldn’t really feel my shins and my feet that well, and my toes.”

Klim found himself unable to stand at times, and at one point he sat on the floor in an airport for hours, waiting for sensation to return to his feet so he could walk out. After a confusing year of denial, tests and scans, back surgery and health scares, eventually a biopsy revealed the diagnosis: CIDP.

“I couldn’t believe how the one thing that I identified with as integral to my identity – my strength, my athleticism – was being taken away from me and I couldn’t do anything to stop it,” Klim wrote on his website.

Shorter and stockier, Klim wasn’t a gliding superfish in the pool like Thorpe or Grant Hackett. He was more of a high-octane powerboat and for three decades the son of Polish emigrants prided himself on a torturous work ethic, pushing his body harder than any of his rivals. And it worked; Klim emerged as a star in the 1998 World Championships in Perth, with seven medals in seven events and a butterfly world record, and he went on to win six Olympic medals and 54 major international races.

But now that superpower was rapidly draining away, and Klim admits it was as difficult to handle pyschologically as it was physically. He went through a “grieving process”, where Klim had to come to grips with his disability and the fear a logical timeline now presented: he may end up in a wheelchair.

“And to a degree the fear is still there. I think I am a bit better, in the sense I have accepted – to a degree – that these are the cards I have been dealt,” Klim said.

“But I am still working through it. When we experience grief, you don’t just go one day, ‘I am fine, I am better now’. It affects you for much longer, and particularly because it is in my face daily.

“There was a fear because I got bad really quickly. I am now in a remission, stable phase. But is there is a fear I may go again at the same rate and if I degrade that quickly again, I probably will need assistance with walking and things like that.”

People would try to lift Klim by saying his decades as an Olympic athlete would help him overcome his fight. But to start with, he didn’t raise a glove.

“I went through a period where I was completely deflated. I was unmotivated, I wasn’t looking after myself, eating junk, drinking too much,” Klim said.

“There was a period where I wouldn’t say I completely gave up, but it took an effort. The people close to me and my loved ones, they saw I wasn’t really fighting.”

At the start of the year, after the world opened back up, Klim realised he had to lead by example and went public with his illness. He travels to Australia every six to eight weeks for intravenous Immunoglobulin treatment and spends time every day doing physical activations, gym work and swimming. He seeks out as much reading and research as possible on CIDP treatments as possible.

“It is a constant … I wouldn’t say battle, but it is a constant lifestyle for me now,” Klim said.

Unable to give enough time, Klim stepped away from his successful Milk & Co skincare business, which put a strain on finances, particularly given insurance doesn’t cover his condition.

But “overwhelming” support from the swimming community has seen Klim become more engaged than ever with the sport. He works with Swimming Victoria in its pathways programs, has a swim school in Bali and is involved in the roll-out of the World Series Swims events, which focus on the popular open-water swims.

Klim is equally energised by his soon-to-be launched foundation, which will help raise funds and awareness for CIDP research, and to help sufferers and carers, many of whom, Klim says, are far worse off than him.

“That’s definitely a big motivating factor for me now and I am putting a lot of thoughts and effort into that now,” Klim said.

The Hall of Fame night in Florida, Klim says, served as the end of one chapter of his life. The next is yet to be written.

“I am working hard to not focusing on the things I can’t do anymore,” he says. “I have to focus on the things I can do.”

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