What Was Missing When I Was Diagnosed with a Degenerative Condition
Why mental health support at the point of diagnosis matters more than we think
Imagine you’ve noticed some changes in your vision. Maybe it’s just time for glasses—no big deal. You book an appointment with the optometrist and go about your day.
That’s how it started for me. But instead of a new prescription, I entered a six-month whirlwind of referrals, testing, and uncertainty that ended with a life-changing diagnosis.
I was in my twenties—building my career, enjoying my independence. I went to the final appointment alone, assuming it was just another check-up. I wasn’t prepared for what I heard next.
“You have an incurable, degenerative condition. You’ll lose your eyesight.”
I remember going numb. I asked the doctor to write the condition on a sticky note so I wouldn’t forget the name. I left with a pamphlet for a vision support organisation and was told, “There’s nothing more we can do—you don’t need to come back.”
That was it.
Looking back, I realise what I needed most in that moment wasn’t just a diagnosis—it was a team. I needed emotional support, someone to walk with me through the uncertainty. Most importantly, I needed mental health care.
My Story Isn’t Unique
Since sharing my experience, I’ve heard the same thing echoed by so many others—especially those diagnosed with rare, degenerative, or less understood conditions.
Mental health support is often missing or inadequate. And when it is available, it’s not always safe, affirming, or informed by the lived experiences of people with disability.
But the data backs this up too.
According to the Australian Institute of Health and Welfare, adults with disability are twice as likely to experience high or very high levels of psychological distress compared to people without disability.
This distress often stems from a mix of trauma at diagnosis, limited access to inclusive mental health services, ongoing stigma, and social isolation.
Offering Mental Health Support at Diagnosis Isn’t Optional—It’s Essential
For people navigating newly acquired or progressive conditions, the absence of early psychological support can intensify distress and delay the adjustment process. It’s not just about processing a diagnosis—it’s about identity, wellbeing, and how you move forward.
The solution? Health professionals and support workers need the training and tools to offer affirming, empowering care that goes beyond the clinical.
That means:
Recognising the potential mental health impacts of disability diagnoses
Offering immediate and ongoing psychological support if needed
Referring to accessible, inclusive, trauma-informed services
Validating people’s experiences without pity or minimisation
Let’s Build Better Systems of Support
If you work in healthcare, mental health, or community services, now is the time to reflect on how we show up during people’s most vulnerable moments.
Want to learn how to support people with disability more confidently and compassionately?
Our evidence-based training and workshops are designed to help teams challenge bias, offer affirming care, and build truly inclusive environments.
👉 Explore upcoming training or contact us to organise a session tailored to your workplace. https://www.beyondbias.com.au/training-and-professional-development-2
References
Australian Institute of Health and Welfare. (2024). Health of People with Disability. https://www.aihw.gov.au/reports/australias-health/health-of-people-with-disability