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This blog post follows on quite nicely from my previous one about why I’m blogging about my pain. I look at why it’s both useful and good to talk about chronic pain and the benefits it can have. And there are a few good tips to help you get started talking about your own pain.
Firstly, it can help us get the help and support we need. For example, visiting your doctor and getting referred to see a specialist who has more knowledge in the medical field associated with your pain. This can lead to the right investigations, treatment or medication. If you are working then being open and honest about how your pain is affecting you and your job can lead to getting workplace adjustments to help you do your job.
Secondly, there is no point bottling it up. I often speak to people who find it embarrassing or shameful to talk about their pain, or their condition and symptoms. Or they feel that it defies who they are. Life does change when you have a health condition or a disability, but it should not dictate who you are or what you do. It is just as important to deal with the mental aspects of chronic pain and giving someone the opportunity to talk about chronic pain is one part of this.
A little more about my pain
In the early days I too was embarrassed to speak about my pain and how it affected me. I, like many others, pretended everything was ok and bravely put a smile on my face and tried to carry on as normal. (In some situations I still do, but I’ll speak more about that in a future post.)
I don’t have a diagnosis nor do I know what causes it. It’s hard to describe and it’s embarrassing to talk about. All I can say to people is that it is lower back pain and I’m in pain when I sit down.
I was originally diagnosed as having coccydynia. Two years later specialists decided that I had a dislocated coccyx. A further three years later and major surgery to remove my coccyx, the pain is just the same. I also have no explanation to tell myself or other people. Out of everything, this is one of the hardest things. Invisible disabilities and health conditions are hard to explain at the best of times but when you have no valid explanation to justify what is causing the daily agony that you life with, then things get that little bit harder.
Pain Awareness Month
As far as I know, there are no UK national days or months that raise awareness Or encourage people to talk about chronic pain. There should be, but ironically, it is far too misunderstood to have a national day to talk about it. Pain Awareness Month is, however, promoted in the month of September in America.
The American Chronic Pain Association helps to promote public awareness of pain and pain management and the issues that people face. And this is a good thing.
Knowing you’re not alone
Taking that first step and talking about things can be a huge step in realising that you are not alone. This is extremely powerful. It’s hard to explain really. When someone ‘gets it’ it can be very comforting. If more is done about raising awareness of chronic pain, and the affects of dealing with pain, then this can open up lots of doors for lots of people. It can encourage honest and open conversations to help people. Even if people aren’t brave enough to speak themselves, they can take comfort from knowledge that other people share.
How to Talk about chronic pain to other people
It can be difficult knowing where to start when explaining your pain to others, especially when the pain is invisible. The WikiHow webpage How to explain your chronic pain to others can be a good starting point. You don’t have to include lots of detail, but the main points to talk about include:
- What pain you suffer and where, and what causes it. You could also go in to more detail and explain how it affects you.
- Use a pain scale from 0-10 to explain how your pain fluctuates on different days. 0 being no pain and 10 being intense pain.
- You could go into more detail about how the pain afffects to and what things you can and cannot do when your pain is bad.
- You may want to take this further by trying to describe what your pain is like to help people understand.
- Talk about your treatment and medication and how it helps, and what side effects you may suffer.
So, what would you do to raise awareness of chronic pain?
What struggles do you have when talking about your pain?
What do you fear the most when chatting to someone new about your pain?
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