Amy

At 21, I developed Degenerative Disc Disease. It’s a genetic disease with no known cure—and my world changed overnight.

I had just finished my marketing degree but ended up on welfare. My friends kept inviting me out but the pain kept me at home, so eventually they stopped calling. And I couldn’t afford to keep living out of home, so I moved back in with my parents.

My confidence plummeted and depression set in. Fortunately, help from a psychologist, and my determination, got me through to the other side.

One of the hardest things, when you have chronic pain, is to find an employer willing to make allowances for you. I recently got a job at a call centre, but when I explained I could only manage short shifts, they decided to not give me any shifts at all.

I guess because I’m young and otherwise healthy, it’s difficult for people to appreciate the severity of my condition.

The reality, though, is that I can’t stand or sit in the one position for more than 20 minutes, and the level of pain makes me exhausted.

I’ve had five radiofrequency neurotomies and two epidurals, to try to stop the nerves sending pain messages to my brain, but the more I have, the less effective they are. Also, at $2,000 per epidural, they are just too expensive.

For years I wondered whether I should live my life like an elderly person and live a quiet life, but that’s not what I want.

For me now, it’s about balancing my life very carefully. If I want to have a social life, it means caring for my body and only working part-time. I’m currently working with an employment service to find something suitable.

My dream is to be involved in the fashion industry. I want to be a designer or a stylist.

Although I had to give up TAFE because of the hours required in a sitting position, and also the cost, I’m hoping to find a different pathway to achieve my goal, one that accommodates the need to manage my pain.