Swimming legend Michael Klim on chronic health condition: 'I didn't act fast enough'
You were diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), a rare autoimmune condition that attacks your body's nerves, in 2020. How did you process this diagnosis?
It's a very good question because this ultimately inspired me to start the Klim Foundation. Initially, the diagnosis I think I didn't treat with the gravity that it should have been treated with. I neglected a lot of my symptoms at the onset and I think in a very typical male fashion didn't act fast enough. So, if anything comes out of our chat, I hope it's going to see a doctor even if the symptoms are as simple as getting cold feet when you go to bed or having numbness in your toes or your feet. I neglected some of those. I had a great team around me but something that was instilled in me as an athlete was that we push through a lot of our discomforts and I continued to do that even in life after sport, which didn't really lend itself to longevity in life.
Unfortunately, I had my very heart stop when I lost the ability to walk and I think it took me about two years to come to terms with accepting the fact - or almost, it was like there was a grieving period of two years of accepting the fact that my physical ability may never be the same, I may never be able to walk like a normal person, I will be compromised. But finding a new purpose in life - I was always very driven and active and very quantitative in that I was very opportunistic and attending many things and being involved in many projects.
I realised through the diagnosis that it came down to quality over quantity, so my life went back to being more measured and appreciating the things I still had. I was focusing so much on the things I had lost. The majority of it was presented to me and I didn't identify it - I had amazing friends in the swimming community, immediate friends and family, and the outflowing from the Australian public, and then other sufferers and carers of patients with CIDP, that felt that someone was finally sharing this message of what we've got, which is as rare as MND (Motor neurone disease). If you ask someone on the street, they now know what MND is but that's because of the great work that many others have done over the years. I've been inspired by those groups.
Now it's been almost six years since my diagnosis, I've learned a lot in that period. There was a lot of time of darkness because there is no cure and you're living in a period of uncertainty - not just yourself as a patient, but your entire support network. That was the hardest thing. Previously, my injuries - if I had a rotator cuff injury or sprained ankle - I knew the protocol and knew exactly when I'd be back. But this has been something different and something new and it's definitely taught me a lot of lessons.
I imagine during that grieving period, you're mourning a normal you can't return to but also trying to envision a future. But with conditions that are so rare, often you're having to become an expert on your own disease at the same time.
That's spot on. Especially with CIDP, let's say there's only three in 100,000 who are diagnosed with it. It feels to me - and I don't know if it's anything to do with my awareness campaign - but certainly I've been approached and connected to so many new CIDP patients of late. I don't know if doctors are identifying it more frequently, but it is that experience of becoming your own doctor.
That's something I think I was doing sub-consciously prior to this; I used to exercise, I used to workout with mates, I used to socialise, I used to love spending time in the ocean, I used to do all these things. Image: @michaelklim1 on Instagram
With conditions where there is no cure, a lot of it comes down to lifestyle. I've been able to lead a lifestyle that is wholesome and healthy and that I can still be active and eat well and meditate. I felt my biggest gains and the gains for me aren't that physical anymore. They aren't huge physical gains, I think I stopped getting worse but I'm not getting better so I'm in this holding pattern at this stage and it's really about working on my mental state and mental health on a daily basis.
That's something I think I was doing sub-consciously prior to this; I used to exercise, I used to workout with mates, I used to socialise, I used to love spending time in the ocean, I used to do all these things. But when things become hard - at the moment I find it hard walking down in the sand from the top of the beach to the water's edge - things you would never consider, things that never were a problem sometimes become a really huge headache. I think just managing your life and prioritising not taking on too much.
I've got a beautiful partner, Michelle, and kids now that understand; they're now aware and opening the door for me, or pointing out the pothole when we're walking. They've all become great support for me.
Me walking around with a walking stick is sometimes intentional to show that it's not always what it seems. Image: @michaelklim1 on Instagram
It's estimated that nearly four million Australians live with an invisible illness. What is the hardest part of living with a health condition few can detect or see?
Being sick has made me a lot more aware of other people. Let's say 30% of people with CIDP may make a full remission, 30% - where I seem to be fitting at the moment - remain stagnant for the rest of their life, and then 30% of people end up with paralysis, full paralysis or in a wheelchair. Even when I wear my braces and I've got my pants on, most people look at me and say, 'Gee, you're so fit'. I've got my upper body and am still trying to look after myself, but you just don't know what hardship people are going through underneath.
For me, I've got another autoimmune condition that interferes with my body temperature regulation - which doesn't help with me living in Bali. But I think it's just bringing awareness to people that there are a lot of people going through hardship without it being visible.
Me walking around with a walking stick is sometimes intentional to show that it's not always what it seems. I met some friends the other day that I haven't seen for a long time and they said, 'Gee, you're so fit, you're looking great.' And then I lifted up my pants up to my knees and showed them my bionic legs and they're like, 'Oh wow.' So you never know what's going on.
These typical sporting quotes like 'controlling the controlables,' I'm still trying to control what I put into my mouth and sometimes if I have to do a longer walk than I anticipated or there are more stairs that are planned or whatever it might be, I've learned to not sweat the small stuff. Image: Getty
After being named Australian Swimming Rookie of the Year at 18, you became a triple Olympian with six medals to your name. How has the mindset learned in your swimming career helped you in facing this health diagnosis?
I think it definitely has for me now in creating a routine and still being diligent with exercise and making sure I give myself enough time. These typical sporting quotes like 'controlling the controlables,' I'm still trying to control what I put into my mouth and sometimes if I have to do a longer walk than I anticipated or there are more stairs that are planned or whatever it might be, I've learned to not sweat the small stuff.
It's part of the Foundation and also my psyche that it does take a team. If you reach out for help - be it mental health or physiotherapy - there are people out there that will help you. For me, I've been able to build a great team of all these experts in certain fields. I'm still a bit of a guinea pig for other CIDP sufferers now and also ones that might be coming in the future. Hopefully, with the Foundation we can accelerate some of these treatment methods and ultimately find a cure one day as well.
You've expressed that 'men, especially, are not great at opening up'. How has learning to live with CIDP changed your attitude towards vulnerability and asking for help?
It's a great question because initially I felt very resentful towards my body and unfortunately I took that resentment out on the world. 'Why do I deserve to be in this situation after trying my guts out in so many different fields' and I felt like I was being hard done by.
Being an athlete and being on the pedestal, there is this self-conscious ego that always follows you around and I hung onto it, thinking 'what are people going to think of me? Image: @michaelklim1 on Instagram
Once I turned that psyche and spoke to people, acceptance was a huge part of it. There was a session I had with my counsellor that I remember to this day where I accepted that this was it, because I was in denial for a long time and when I was publicly ready to talk about it, I had to drop the ego. Being an athlete and being on the pedestal, there is this self-conscious ego that always follows you around and I hung onto it, thinking 'what are people going to think of me? And what are they going to think when I walk into a restaurant and start swaying, and can't walk properly and have a walking stick?' Once those thoughts left my mind, I learned to manage them. That's what we want to offer with the Foundation, services from mental health to physiotherapy, podiatry, nutrition and all these others.
You're an ambassador for Lifeblood, an Australian Red Cross organisation that provides blood and plasma donations. How has giving back to others empowered you on your own health journey?
I've found a lot of empowerment from being able to help others and with the Lifeblood campaign, which lends indirectly to the condition because one of the best treatments is IVIg which is a plasma-derived medication. So, together with Lifeblood and The Klim foundation, I think it's a really strong purpose for me to keep pushing; it keeps me young and motivated and that's important because there was a period where I was a bit of a recluse and took myself out of the social circles I used to be in.
We've had amazing support from Lifeblood as well with getting the foundation started and there's been so many people come onboard. Image: @klim.foundation on Instagram
In May, you launched The Klim Foundation which aims to improve awareness, funding, and treatment access for those living with CIDP. What was the inspiration behind starting the foundation, and what do you hope it achieves?
It's there to give patients and families and carers hope. Give them hope that there's still a very fulfilling life out there. One of our founding partners, SDA Living Australia, provides equipment and builds homes for people with a disability. In my shower, I have to have a railing to hold onto and I can't have a step and can't have slippery floors. These little things that for the average person is nothing, but for me I've fallen over and tripped so many times. We've had amazing support from Lifeblood as well with getting the foundation started and there's been so many people come onboard. We want to get to $1 million in a quick period of time to be able to activate all our services. So far, the fundraising is going well but obviously we're out there aiming high and that's the way I'd like to do it.
We will be providing information that is proven and researched, but we will also have a fund to provide services for people in cases that the NDIS does not cover. Not only do we want to be a directory of services, we also want to provide them and be a community for people going through this and ultimately support and fund it. There's a lot of people who want to get behind the Foundation. We have to champion the journey of CIDP, and it's not going to be one champion - I think this is going to take thousands of champions out there. We want to become a body for information and all things research when it comes to this condition because there is nothing out there at the moment. There's a global foundation, but nothing that's focused on the Australian community.
Living with a chronic disease, what does wellness look like to you now?
Wellness for me looks like coming in all these dimensions. You've got physical, emotional, spiritual, financial, social, environmental. I look at it and try to be the best in each area as much as I can. If you drew that, you'd get a diamond and some people are really good at spiritual things and intellectual wellness could be really high, but their physical could be really low. I try to look at wellness and rather than having a diamond, I want to create a circle with a high level of wellness in most of those areas. That means having time for mindfulness and mental health, to do my meditation, or sometimes going for a swim is mindfulness. It could be nutritionally, looking at what you eat is wellness. It's not necessarily all physical wellness. There are seven dimensions and I just try to do my best in each.
Originally published as Swimming legend Michael Klim on chronic health condition: 'I didn't act fast enough'
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