We asked people in pain to help us develop a big picture overview of what is involved in the pain journey. It is not simple, as pain is a highly complex and individual experience.
Thanks to members of our community who contributed to this.
There is no particular order in the journey for people in pain. It is individual. The following is a number of categories that people talk about in retrospect.
1. Understand as much as you can about the causes and the processes of chronic pain.
This means a number of things.
What a health team can do for you: Firstly, what does your GP say? Do you think she or he is adequately understanding your pain? There are a few pointers here in this fact sheet about "Choosing your team"
Have you been referred to a pain specialist and do you have access to a multi-disciplinary pain specialising team? See here for more information
What you can do: Do you have a diagnosis? There are many conditions that lead to pain, including cancer, auto-immune diseases, arthritis, and others. There is also a huge number of people whose pain starts after trauma. There are some who have chronic injuries (eg sport, car crashes etc) who realise they are living with chronic pain.There are some who are never given a diagnosis at all.
There are resources here for you to start to understand the science of chronic pain. Whatever your diagnosis or advice received, you can learn as much as you can about how the nervous system works, how the immune system works, what is known to make pain worse, or better.
2. See the potential in yourself to be different to what you were before pain
Some people talk about learning how to accept that you are living with pain but for many this is a hard thing to deal with. Other people talk about learning to see themselves differently, not in the same way as they did before they had chronic pain. Were you someone who before the pain was a "super" man or woman who did lots of things at the same time - juggled work, kids, sport etc. It is difficult to reconcile who you were with your current abilities.
There will be more content to come in this space.
3. Neuroscience of chronic pain is not understood by all healthcare providers, and this is bigger than any one person
Many people tell us how frustrating it is when you go to a consultation and leave feeling that you have been blamed for your pain ("You are too fat etc"). This is the beginning of stigma, and it is important to see it for what it is. This is about the rest of the world not yet understanding the reality and the neuroscience of chronic pain.
What can be done about that?
Chronic Pain Australia is working on this level. We are trying to help the rest of the world catch up. However this is where you come in, as it is important to recognise when you are seeking help in the wrong places, find a health team that is specialised in pain - and remember that they are not all the same! go to the "Choosing your team" fact sheet.
4. Learn strategies for dealing with pain, isolation, fatigue and with the depression that often follows pain.
Pain is complex and subjective - everyone will experience pain differently, even when they have similar injuries, such as a sprained ankle. This is because how we perceive pain is a complex interaction between mind and body. This interaction involves the nervous system and other factors, such as genetics, culture, thoughts, emotions, previous pain expereinces, stress, and what was happening in our lives when the pain started.
Because pain is complex, there is no 'one-size-fits-all' way of treating it. This can be very frustrating and distressing when you're in pain. However, to be successful pain managers, we may have to use a combination of things such as medications, diet, relaxation, thinking strategies, and more. The good news is that, over time and with support from others, it is possible to 'turn down the volume' of your pain, and enjoy life.
The NSW ACI (Agency for Clinical Innovation) Chronic Pain website provides a good introduction to chronic pain and strategies for dealing with it: http://www.aci.health.nsw.gov.au/chronic-pain