I’ve lived with chronic pain for more than 36 years. The only thing I can be sure of is that it never stays the same for more than a few days at a time. The place where I feel it, the type of sensation I experience, the degree to which it dominates my thoughts and feelings — they all shift. When I described this to a friend, he said it sounds like a shapeshifter inhabits my body. I think that’s right.
I know that I haven’t experienced the kind of severe pain that some have. Close family and friends as well as many clients have described intractable pain that I can’t begin to imagine. But I have seen how pain can wear many people down, including me.
Living with pain creates a myriad of problems. But I’ve found that the need to talk about this experience can be the key element that breaks the spirit. Great writers struggle to find the right word that creates the feeling, emotion or shared understanding they seek. And when you’re in brain fog and filled with anger that this is happening to you, it’s even more difficult to try to describe the pain or consider your needs. When you add into this already murky pot the waxing and waning, unpredictable nature of pain, you’ve got a situation that slides to hopelessness.
But think about this. If you haven’t lost hope that there could be something that might improve your condition and you seek medical help, most likely you will need to describe what the pain is like, where it is and the degree of pain you’re experiencing. For the last point, most health care providers use what’s known as the Pain Scale. Most of us patients find this a completely frustrating experience.
Why? First, we haven’t a clue how these numbers correlate to our experience.
And, we worry that:
- Rate the pain too low, we won’t get help.
- Rate the pain too high, we won’t be taken seriously — or worse, seen as an hysteric.
- Since the pain is rarely the same for long, how do you box yourself into a number?
I have a suggestion. This article is especially helpful when you have to use a pain scale to communicate with a healthcare provider. Print it and share it to confirm there’s shared understanding about the system you’re using.
But there’s another place where you can feel you’re beyond your capacity. What do you do when you have to explain why you can’t do something and a rating is even more meaningless?
What do you say to:
- Friends when you can’t go out for a drink or to a movie as planned?
- Your loved one that you can’t go out to dinner because you can’t sit in a restaurant or be with others?
- Your boss that you can’t go to the meeting you’re supposed to lead that day?
You have to come up with your own language. I’m not saying there’s a simple formula but I have found that there are some ideas that will help you create your message and respond more effectively. Here are 3 ideas to help you get started and if you want more detail, I explore this in detail in Are You Talking:
- Make it clear that the symptoms change unpredictably and frequently or infrequently, whichever is the case.
- Stay clear of medical terms and vague explanations that might create confusion.
- Focus on what you can and cannot do because of these symptoms.
- And here’s one more that’s not in the booklet: Let the other person know that you are deeply disappointed that you have to disappoint her!
You’re living with a condition you didn’t seek and you certainly don’t want. You didn’t choose this life but it sure is easy to doubt yourself and feel guilty. But that doesn’t change the fact that it’s up to you to figure out where and how to get the best healthcare you can and how you can stay ‘in the world’ as best you can. Start by sharing enough information about this unpredictable and difficult experience that no one can see so you can get what you need — and want.
How are you doing with this? Where can you get the help you need to manage this even better than you are? Where do you turn?