‘To hell and back: My experience of living with chronic pain’

I am 61 years old, and for about 52 years, I managed my ongoing pain in various ways and lived a wonderful, fulfilling life. Yet in 2013, this all changed dramatically. It’s hard to pinpoint exactly what causes my chronic pain – it could be because I had the first of 20 major stomach and spinal surgeries at 10 days old, or maybe my riding accident when I was 14 was the trigger?

Either way, my brain and body reached a tipping point at a time when my life was meant to be on an amazing new, exciting trajectory. In writing my book about my experience, I realised that between the ages of 44 and 59 years old I had 25 hospital admissions!

Having moved to the beautiful Northern Rivers NSW in 2012, my husband and I were excited about building our new home on 5 acres of gorgeous land overlooking the Eltham Valley. I had a new job as manager of a pilot mental health program and was excited about this new chapter in our lives.

But the pain had other ideas. Within a year of being here, I had to quit my job and found myself totally limited between hospital and home. Neil had to become my full-time carer. Within that year I had gone from a woman with energy, hope, and vision, excited about the future, to exhausted, brain-fogged, frustrated and depressed, terrified of what lay ahead.

The pain was ruling my life and Neil’s. I reluctantly had to accept the fact that my lifestyle had changed. In fact, I was either bed-bound or house-bound by this stage; getting into a car was impossible 90 per cent of the time and, when I did, it would take a lot of manoeuvres, time and screams involuntarily exiting my mouth as I attempted to get into the seat. Then of course, I had to stay put for the length of the journey, a mammoth, exhausting, painful task.

So, I was now at the stage of being unable to organise any social events, exhausted from sleepless nights of pain and days of frustration, limited movement, and medication top-ups. We had regularly visited my family in the UK, a promise I made myself when I emigrated here 35 years ago. It seemed to me that this was never going to be a possibility again – never see my parents, siblings or long-term friends.

Emotionally, I felt lost and alone. I was surrounded by love: love from my husband, my children and extended family. But I truly felt this was a battle that no one could possibly understand. I was grieving the loss of life as I had known it, the ability to manage the pain and continue to ‘get on with my life’. My grief became an all-consuming emotion.

I of all people knew that grief could do this to a person. My doctorate research focussed on the impact of grief and the gaps in support. I didn’t realise at the time, but I was experiencing so many of the emotions that are identical to those who are grieving. Grief takes on various phases, and these include anger, frustration, denial, bargaining, depression and finally, hopefully, somewhere along the long, dark, seemingly endless, lonely tunnel, some form of acceptance.

These stages are actually a jumble of emotions, with no order to them and no luxury of warning. They just came, hit me when I least expected them, bringing me crashing down. Learning to manage these overwhelming emotions has been a process, one which takes acknowledgement, time, strength, energy, and a will to crawl out of the despair. That’s not easy when you suffer chronic pain because, most of the time, you are exhausted. And I was all too aware of the gaps in how health professionals were able to support me through this quagmire of pain.

What was even more amazing to me was that with my clinical and research background, I was really struggling to find the support I needed and some answers. So, if I was challenged with that, it made me realise that others without my background must find it impossible. Hence my book.

The first part of the book, which I’ve titled Living with Chronic Pain – From OK to Despair and Finding My Way Back Again gives a snapshot of my life; how I was able to manage my pain through continuing to work, having kids and travelling. I then share some of my experiences with doctors, pain clinics, with friends and family and how my personal relationship has been impacted. I highlight what support I needed and did and didn’t get and as a result, make recommendations to family, friends, health workers as well as those of us who live with pain. Because we too have a responsibility to try and articulate what we need from others.

Importantly, I want people to understand that living with chronic pain is a real thing; that we need to be validated, believed, and supported. Because for most of us, it’s not a question of curing the disease; it’s a matter of learning how to manage it so we can live the best life possible. It’s a raw, authentic insight that I hope will help everyone involved with chronic pain have a better understanding of the challenges we face and to understand the kind of support we need.

Dawn’s book Living with Chronic Pain – From OK to Despair and Finding My Way Back Again is available for purchase here.