Emily Petricola - making her abilities visible while living with an invisible disability

Emily Petricola was diagnosed with multiple sclerosis at the age of 27. Subsequent and frequent MS attacks severely impacted her ability to function and further debilitating symptoms rendered basic tasks challenging and incapacitated Emily for a number of years.

With sport a strong part of her life before the onset of MS, Emily remained determined to participate in physical activity. In 2015, Emily began training along with another good friend, five-time Olympic cyclist Shane Kelly and less than three years later she made her first appearance on a World Championship podium.

Between 2018 and 2021, Petricola rocketed through the international world of para-cycling claiming five world titles on the track and road, before riding to Paralympic glory in Tokyo in 2021.

On International Day of People with Disability for 2021, Emily shares her story with us about living with an invisible disability.

Words by Emily Petricola

Imagine being a cute 27 year old woman at work when you start tripping over your feet - walking around, feeling a bit odd, and then within a couple of weeks you wake up and can’t feel your body from the neck down.

This was how my first MS relapse affected me.

At the time I knew nothing about MS outside of the fact I raised money for research through the MS readathon when I was younger (I had even written a picture story book about me having MS in grade 3 which was a bit confronting to find post-diagnosis). On any given day I can be dealing with tremors, hypertonicity, foot drop, nerve pain, compromised eyesight, vertigo, crippling fatigue, hands that can’t hold on to much – some days using a pen to write is actually impossible, bladder dysfunction, loss of balance, temperature control issues, sensory input weirdness – imagine being a bike rider who can’t feel their legs properly, unco-ordination, tingling so badly it feels like my entire body is vibrating, trying to train whilst feeling like you have ants crawling under your skin, there’s muscle weakness, impaired memory, “cog fog” which is where your brain feels like it is filled with cotton wool…finding the right words or any words at all can be impossible.

It impacts every area of my life. Imagine that while all these are happening, no one can see it. No one can easily understand it.

Now imagine being a para-athlete with an invisible disability.

You race in competition against amputees, you have teammates who are wheelchair bound, yet you look normal to most people – you in fact pride yourself on not allowing people to see what is wrong with you. Imagine knowing that people are questioning the legitimacy of your place in the competition all the while trying to deal with any number of those issues I’ve already listed going on in the background.

Challenging doesn’t begin to describe how hard it can be.

Those who work closely with me, or train with me consistently and I feel comfortable with knowing, see how difficult it is to be an athlete with a degenerative condition like MS. It is a cruel disease that strikes at the heart of how you can go about everyday life, and the kicker is that you don’t have any clue about which version of challenge each day is going to bring.

Some things are consistent, every day I have tremors, pain, balance issues, poor motor control, tingling, no true sensation in my legs, fatigue.

The other things are like a lottery…which one I am going to have day-to-day is a mystery until I wake up. I remember when I was first diagnosed reading a comment on a forum around managing the fatigue that is associated with your brain trying to reroute who knows how many of its messages every day as it works around the lesions is it inflicting on itself.

Every day we wake up we have a limited number of spoons to spend in the day – these spoons represent how much energy you have. You have to spend them wisely.

As an elite athlete with MS there have been many a day where I have woken up with only one or two spoons to spend – I always choose to channel these towards completing training as well as I can irrespective of anything I am feeling.

Imagine trying to be a coach or service provider working with someone who presents differently every single day that they train and they do not want to talk about it when things are bad.

I cannot tell you how much respect I have for those who have helped me on this journey over the years. I am actually really limited in terms of what I can do with my training. I am an endurance athlete who cannot do volume, I cannot do any weight lifting that requires balance, nothing that involves holding onto something, jumping.

My coaches, both cycling and S&C, have to be flexible in their approach to work with what I can and can’t do on any given day. The worst part for them is that despite all I cannot do, I am also an athlete who wants to set performance standards that no one in my classification dreamed possible a couple of years ago. Always pushing for more. Even when I can’t and almost always when I shouldn’t.

Imagine trying to manage me, who is perfectionistic in terms of training, always wanting to exceed targets and defy expectations as well as what my body is telling me it cannot do.

Imagine trying to tell me I can’t do an effort or a session!

Imagine how confusing it is to have an athlete come to you in tears about how horrible they are feeling, then see them perform efforts faster than they’ve ever ridden.

Imagine them telling you that this is when you should be most worried because it means their body is in fight or flight mode and just trying to get through what it needs to to end the difficulty so they can go back to bed – that they are scared that by doing exactly what they want to be doing is going to negatively impact their future function.

Anyone involved in my preparation has to make smart decisions around my training, not really understanding what is going on under the surface nor what could push me into that dark place towards my next relapse. How would you cope as one of the coaches? The physiologist? The physiotherapist? The nutritionist? The High Performance director? How would you feel with that kind of responsibility on your shoulders?

I choose the team of people I work with carefully because I understand the challenge I present in terms of this illness – the vagaries, my reluctance to report, combined with my undeterred drive and determination to be the best I can be. It is a very tough gig…but I hope a rewarding one too.

Invisible disability is rarely spoken about and I know with me it is because I don’t want the world to only see or focus on the MS dysfunction and challenges. Invisible disability is not just MS, this is just what I can speak to.

Despite all the crap parts around my MS, in my heart of hearts I genuinely feel like everything has happened for a reason to help me do what I am doing on the bike.

Hopefully providing a pathway toward educating those interested in our sport and stories about taking the focus away from the hardships we all face in our lifetime and the most difficult parts of them, and spotlighting those things we can control and making the best of any challenge that might befall us in our lifetime.

Emily Petricola

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Emily Petricola is a Paralympic gold medalist and five-time world champion para cyclist. Follow Emily on social media via twitter @emily_petricola, facebook @Em-Petricola-Paracyclist, instagram @em_petricola_cycling

​​​AusCycling is the peak body to support cyclists with visual and physical impairments enjoy the great sport and activity of cycling. AusCycling supports and promotes para-cyclists through a range of opportunities including events on standard bikes, tandems (with a vision-impaired rider on the back), trikes (for cyclists with a balance impairment), and kneeling and recumbent handcycles (for cyclists with lower limb weakness). auscycling.org.au/page/para-cycling

The Australian Cycling Team Para Program is designed to cater for elite-level Australian athletes in the Para categories and is funded by the Australian Sports Commission (ASC) via the Australian Paralympic Committee. The program provides the best possible training and competition opportunities for identified athletes to deliver medal-winning performances at the Paralympic Games and World Championships. www.australiancyclingteam.com/para

MS Australia, Australia’s national multiple sclerosis (MS) not-for-profit organisation that empowers researchers to identify ways to treat, prevent and cure MS, seeks sustained and systemic policy change via advocacy, and acts as the champion for Australia’s community of people affected by MS. www.msaustralia.org.au

International Day of People with Disability (IDPwD) is held on 3 December each year. IDPwD is a United Nations observed day aimed at increasing public awareness, understanding and acceptance of people with disability. www.idpwd.com.au