Through the month of November we want to hear from people living with pain, as we highlight stories and encourage discussion as part of our #mypainjourney campaign.
We have previously spoken about individual stories of pain and how each individual’s experience and situation can be quite different. Everyone living with pain has a story of learning about their pain, finding support and exploring pain management options. We want to hear them all.
Not only will sharing these stories help us to learn together, provide insight or motivation for others living with pain – it can also help to reduce the stigma around talking about pain.
We are beginning to make progress in developing more respectful partnerships between health service organisations, health professionals, patients, families, carers and consumers. But we still have a long way to go in progressing this in primary care and our communities, especially for those consumers who maybe most vulnerable and stigmatised.
People living with pain often feel judgement from others – at home, at work and in the broader community – when talking about their experience. This can lead to feelings of being misunderstood and can be quite isolating. The #mypainjourney campaign aims to provide a safe space. A space for sharing and learning that is free from cynicism and judgement.
Keep an eye on our Twitter and Facebook channels as we share stories over the next few weeks and pose questions to prompt conversations. The topic this week is learning about your pain, and the experience of being diagnosed with chronic pain, whether by a health professional or self-diagnosis.
Here are some of the responses we have received to the question ‘How long did it take before you were diagnosed with chronic pain?’:
“It was well into my journey, but it was once I started seeing a pain management doctor who basically named it in black and white for me. He acknowledged all my obstacles and where I have come from. He also diagnosed me with failed back surgery. It’s been a hard realisation of the chronic pain label, as the impacts on work has been the most challenging. As people who don't know about it, just don’t understand and the consequences of that, I find the most challenging.”
“20 years, like the other comments I was diagnosed with multiple issues, well before CRPS was ever mentioned to me.”
“After one year failed spinal fusion. Still on it and managing ... 10 years now with degenerative arthritis and gout on top. Cannot help thinking they are related somehow.”
“This year marks 20 years since the journey started. Could write a book. Currently been seeing a 5th pain management specialist for a year who’s only goal is to get me totally off meds. A month ago he ordered new ct scans because I’ve been nagging about the pain. He’s just put me on a new med Palexia. Personally I feel our medical system is a mess.”
“7 years they couldn’t find anything. Finally got diagnosed with 6 types of Arthritis.”
“Ten years. Spent thousands on treatments - no exaggeration. Course of laser light therapy $6k. Plus chiropractic. Physio. Prolotherapy. Piles of pills. Nothing worked. Yes, it was all in my head too - until I demanded a 4K high res CT scan, that I had to argue with my GP to get. It showed significant spondylitis in my cervical spine with nerve damage.”
I would encourage you to all join the conversation, whether you wish to share your own story, or leave a message of support for others.
We hope you find benefits from this campaign, whether it is learning something new or finding comfort in the solidarity of others, as we aim to raise the voices of those directly affected by pain.