Inclusion

My lived experience with invisible disability

I delivered the keynote on “Breaking the Bias” for the Rotary International Women’s Day Breakfast 2022. I spoke about breaking unconscious biases related to people with disabilities. What comes to mind when you think of the word ‘disability’? Is it someone in a wheelchair?

These images come to mind because they are easily visible and often what’s portrayed in the media. In reality, 90% of 4.4 million people with disabilities in Australia are living with an invisible disability. It’s crucial for there to be more diverse representations of people with disability that don’t reduce them down to a stereotype.

A way we can combat these stereotypes and unconscious biases is through speaking up to bring visibility to invisible disabilities, which improves awareness of disability as shared universal human experience likely to affect each one of us at some point in our lives.

Today, I share my experience with invisible disability over the last 12 months to raise awareness and help reduce the stigma around invisible disability, and with the hope that anyone who relates to these experiences can feel more seen and less alone.

In March 2022, I was working full time as a clinician in Special Needs Dentistry, as well as an ultramarathon runner, rock climber, aerialist, and in the middle of training for an Ironman triathlon.

In April 2022, I became unwell with COVID and experienced severe nasal and respiratory symptoms which persisted for several months, along with joint pain, fatigue, brain fog, sinus and chest pain, palpitations, and shortness of breath. I went from a young, fit, and healthy person to being diagnosed with three medical conditions: long COVID, asthma, and vocal cord dysfunction.

It was confronting to go from being a person who had the physical capability to run an 105km ultramarathon, to then struggling to breathe while vacuuming, but the most devastating and difficult part to come to terms with, was losing the ability to look after my patients. Not accepting my new physical limitations, I persisted in trying to get back to work before I had recovered, and in the middle of attempting multiple extractions while wearing a P2 mask, I pushed myself too far and it resulted in a trip from the clinic to the emergency department.

Then followed many months of regular appointments with various health professionals: my GP, respiratory specialist, ENT specialist, cardiologist, speech pathologist, pulmonary rehabilitation team and respiratory physiotherapist, alongside wrestling with the uncertainty of long COVID being a relatively unknown condition and with only experimental treatment options available.

All three conditions are not apparent when you look at me. This invisibility, has its advantages and disadvantages.

A significant disadvantage of invisible disability is that sometimes people don’t believe you when you tell them about the hidden symptoms you experience. Over many years caring for my patients with non-visible disabilities, I heard them share stories of the judgement they received from others – from being accused of faking their symptoms or exaggerating their severity and resulting in them having to constantly justify and prove their existence. I experienced this same stigma with my conditions, including from colleagues and people who had COVID and assumed my symptoms couldn’t be that bad because they had recovered from it.

My non-visible disability became visible through a Holter Monitor for 24 hours, to review my cardiac abnormalities. The fact that it was tangible and visible, helped legitimise my symptoms to others who may have doubted the severity of my illness. But it also came with strange stares in public, unwanted attention to my illness and questions directed towards it at times when I didn’t feel prepared to share about it. This is an advantage of the invisibility, the advantage of secrecy, and the choice to select who you disclose your invisible symptoms to and in your own time.

I am grateful for having been through this journey, as tough as it was, because of what it has taught me. I now have more personal understanding of the daily challenges my patients who have chronic conditions are faced with and can bring this understanding to deliver better care for my patients.

It also allowed me to practice the power of acceptance. Initially, I had been trying everything in my power to get back to my pre-COVID level of function, which included being full time in the clinic, and eventually it became apparent that I was resisting the reality of the chronic limiting nature of my medical conditions. The non-acceptance of this reality layered on additional self-created suffering, through wishing things were different from what they were. Once I accepted the physical limitations for what they were, it opened me up the other avenues I could contribute to my patients and my profession outside of my role as a clinician, and has created space for engaging in broader scale oral health advocacy, re-engaging with my passion for mentoring and coaching to support others in my profession – all of which align with my mission to create a more inclusive society where every person can access oral healthcare, to eat, speak, smile freely, and reach their full potential.

It has been almost 12 months integrating these conditions into my life, and I have reached a place in my recovery where the symptoms are less severe, more stable and I have proactive strategies to get back to doing the things I love, and though it looks different to how my life was before, I fully embrace and accept that. While I may not be back to pre COVID levels of Ironman training, I’m back to the swimming pool and having fun celebrating reaching each new milestone, as opposed to comparing to what I used to be able to do before.

It has taken a while to feel comfortable to share my experience publicly – especially after experiencing judgement from people who were made aware of my invisible conditions through most of my journey. But, when I came off the waiting list and attended my first appointment at the long-COVID clinic, the physician shared the stories of his other patients, other young, fit and healthy adults whose lives turned upside down from long COVID and were experiencing the same symptoms I was, and it helped me to feel less alone in my struggle. I finally felt seen and heard, and so I hope my sharing of my story can help someone else in the same way it helped me.

People with invisible disability face a different type of stigma to those with visible ones. When people are accused of faking their symptoms, or when people minimise or invalidate their experience, it can stop them from talking about their disability or cause them to downplay their experiences – which perpetuates the invisibility and stigma even more. Each one of us can contribute to breaking this stigma through responding with compassion and without judgement when a person with an invisible disability choose to share their experience, or through stepping out in courage and sharing your own experience of invisible disability. Together, we can build a more understanding and more inclusion in our society, one story of lived experience at a time.