In January 2018, Chronic Pain Australia the national voice of people living with chronic pain, launched its Lived Experience series which is designed to explain to people who don’t live with chronic pain what life is like for those who do.
Our members have told us that in some circumstances health professionals and people in their support network often don’t have an understanding or empathy for their experience of living with chronic pain. This contributes to the distress of chronic pain and is very detrimental to their recovery.
We believe that de-stigmatising chronic pain to the Australian community is essential and helps save lives.
Equal partners in my health care is the perfect title for my story, if I had a voice during my early surgeries I would never have ended up with a permanent disability and chronic pain.
My problems started out much the same as many other women, I had ovarian tumours and endometriosis, I went to my Dr for persistent pain and they discovered I needed surgery. It worked for a while and then the tumours and endometriosis come back so another surgery, then it happened again, this time I researched for a long time and made the decision to ask for a hysterectomy only to be told I was too young, I was 32 and had had my two children and didn't want anymore. I couldn't understand why they wouldn't allow me to make the choice, wasn't it my body ? They disregarded every argument and the third surgery went ahead, after the third surgery I developed an abscess and I required emergency surgery this one was number four.
I have lived with different forms of chronic pain for the last three years. When I was 30 I was in so much pain my back was killing me, my hip pain was worse than it had ever been, and my IBS was out of control. I could give a watermelon a run for its money on the size of my stomach. I was sick, tired and fed up. The year prior I had been diagnosed with IBS, Interstitial Cystitis and costochondritis and at 30 years old I really couldn’t understand why my body was failing me.
I have lived with chronic pain since 1997. I had an accident in 1986 when I was 33 which ruptured a disk in my lower back. This put pressure on nerves and I lost the use of my left leg and bladder and was in incredible pain. I had surgery a couple of days later and after about 6 weeks I recovered well, and everything was relatively normal again. There were some life changes. Due to the nature of my employment I was rehabilitated into an office position which didn't suit my style and so eventually I left, bought a small business and life went on. My back was relatively ok for the next 10 years, but little did I know that accident in 1986 was a precursor for worse things to come.
I have been living with chronic pain on and off for more than ten years and I am at the point where medication is my only viable option. I hurt my back in a fall at work, because of that I have had three surgeries on discs in my lower back over the space of about five years. Before all these surgeries I was placed on medication until it was clear that surgery was the only option. The medication was Oxycontin and Lyrica. After each surgery I stopped taking these medications pretty quickly.
I have lived with severe, disabling, chonic, non - cancer pain for over twenty years. It hasn't been fun, and I've lost a great deal - my career, my strenuous outdoor pursuits, (horse riding, distance swimming, motorcycle riding), my independence, my faith in God, my faith in human nature and the ability to be able to make snap decisions on where I go and what I do in my day.
Imagine being in pain every second of every minute of every hour of every week of every month of every year for the rest of your life. This is the reality people with chronic pain (CP) face, and I find it surreal this is my reality now. Life was not meant to be this way. Especially not for me, once a high achieving, vibrant and enthusiastic young woman. And especially not since I'm an experienced physiotherapist on my way to a PhD and yet I can't fix myself. In fact, no-one can fix me, not any of the fourteen wonderful pain/mental health professionals I work with, not any of the thirteen pain, psychiatric and other medications I take. This pain will be with me forever.
I had major spinal surgery for spondylolisthesis in April 2013. One of my vertebrae had slipped out of line (after having my first baby), and there was no disc at all. So, they needed to fuse L5/S1 vertebrae together, put in a cage and two screws to hold me up. I had a 1 year old and a 4-month-old. I couldn’t carry my baby for many months. I needed the help of my mother and an in-home nanny which we really couldn’t afford but there was no other way to get through the day. It took 4 years to recover from and I still have some pain today. However, since that surgery I now have neck degeneration which causes sever migraines and shoulder pain. This is an ongoing problem, which I will manage for the rest of my life. I have lived with chronic pain now for 7 years as the pain started when I had my first baby.