Saturday 3 December is International Day of People with Disability, more than 5,000 people are injured yearly in Victoria through road trauma. Our lived experience volunteer Bernie, shares her story about her hidden disability resulting from a serious road crash.
“My pain is invisible; you can’t see or touch it. I guess I can sort of see why some people mightn’t believe I’m disabled.
You’ll see an average, unremarkable person when I’m out in public. What you won’t see is what’s going on inside my body. You won’t feel the aches and pains permanently embedded in my muscles, the brain fog from pain medication.”
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Bernie on a good day and showing the consequences of going out.
Bernie has lived with chronic pain for more than 30 years, impacting every part of her life.
“The easiest way for me to describe chronic pain, so people understand. It is to say that it’s like having a headache every day, all day. Sometimes you can still function normally with it being in the background. Other times the headache is louder, and you have difficulty thinking and doing tasks, which is a migraine, and you can’t do anything.”
When Bernie was 23, her life changed forever when a young, speeding male driver hit the back corner of the car where she was sitting.
“From that moment on, my life was changed. I never went back to work. Instead, I have had a life of chronic pain.”
Bernie had dislocated her left hip, fractured her acetabulum, bulged discs, and had a fractured pelvis. After surgery, she spent the next six weeks laying flat on her back with a weight attached to her foot. Bernie was then transferred to a rehabilitation centre, where she lived for another six weeks. It took about eight months for Bernie to learn to walk again.
“I was young and naive, and l thought doctors would find the reason for my pain and fix it. And I would be able to work and do everything I had planned. But now, nearly 30 years later, I still have chronic pain.”
“Over the years, I have had 11 surgeries and spent about ten years in bed.”
“People assume that things get easier with time, but it’s harder. It’s tiring and physically more challenging with my aging body. I have early arthritis in the hip, which makes it harder to bend down to get dressed and do everyday tasks, like cleaning, shopping and even walking.”
“You won’t know I’ve meticulously planned my day because any spontaneous activity I haven’t budgeted for risks sending me into bed for a week or more.
But just because those things aren’t immediately visible, doesn’t mean they’re not there or don’t happen.”
“I speak at Amber Community’s Road Trauma Awareness Seminars to give my life some purpose. If that young, speeding, distracted driver was going slower, there still could have been a crash, but I may have only broken my hip, had six weeks of recovery and been back to work and living my living. This is not the life I wanted or planned, not for my family or me.”
Bernie did get married and had two beautiful girls, but they, too, have felt the impact of Bernie’s disabilities.
“We recently had a family meeting, where they said they love me but hate the pain and need breaks from me. Even though it hurt to hear, I understand. I wish I, too, could have a break from my pain.”
“When I was 23, I had the world at my feet. I had goals and dreams. Now at 53, I look back, not on a wasted life but on a life not lived or fulfilled as I desired.”
