Thriving despite the pain
Living with an invisible illness
Chronic pain is an invisible health problem for one in six New Zealanders.
I have chronic widespread pain (Fibromyalgia), and I also work with people who have chronic pain as a clinician, educator and researcher.
It's difficult to manage pain, especially in the early stages. Most pain goes away - chronic pain doesn't. It's defined as pain that lasts for three months or longer.
Any initiating physical trauma to the body has long resolved. There are no scars. There is no pain thermometer to show others just how sore you really are.
While people might initially be sympathetic when you've got pain, over time they get less and less comfortable with accommodating your limitations.
I've recently submitted my PhD thesis studying people who cope well with chronic pain. What I've found is that it takes a while before people get OK with integrating pain into their identity, but once they have, pain can become less defining and turns into something that is just a small part of identity. The things that help are these:
- making sense of pain, knowing what it is, knowing that it's not harmful/damaging, knowing that it can be managed and life can go on although not as it did before.
- reaching a turning point where the drive to do what is important in life outweighs the benefits of looking for something to take the pain away.
- having something important to do, something that helps create and maintain a sense of purpose and self identity.
- having a range of coping strategies that help.
There are two strategies in particular that people identified:
- being mindful of pain (that is, not judging it as negative or awful, just acknowledging that it's there but isn't especially relevant to goals).
- using exercise for wellbeing rather than to get fit or strong.
I personally use both of these approaches. I have important things I want to do. This keeps me going when I'm really uncomfortable.
Most of the time I don't refer to my pain, except to very close friends. Most of the time I just plan carefully, decide what I'm going to do and what I'm not, and prioritise accordingly.
If people feel frustrated by me not doing some things they think I should, I can't alter that - that's their emotional response. I have good reasons not to do certain things from time to time, and I feel OK about setting those limits.
My pain is mine, it's not someone else's responsibility to manage it. It's my job to make sure I get to do what's important in my life, just as it is for anyone else. I just have a little less elasticity in my coping resources.
After living with chronic pain for a long time, I think of it as just a small facet of who I am - just as my hair colour, height and gender are only part of who I am.
View all contributions