Looking through all my posts, I realised that I’d never written anything about something that looms large in my life every single day and also in that of my fictional alter-ego, Mac Maguire. It can, by itself, decide whether a day is going to be good or bad.
So, what brought this up in the first place? I was having an email conversation with one of my readers, who also has pain issues, when I was reminded of a review that someone left for one of my books a few years back. I’m paraphrasing here but it went something like – ‘It’s a good story and we know that the lead character suffers from pain but I don’t know why the author needs to keep mentioning it.’
To explain, Mac Maguire is the main character in my crime series of books. He’s a former police officer and murder specialist who was forced to retire from the force due to damage to his lower spine. This damage led to him having ongoing pain issues, in fact, pain issues very similar to mine! So, why did I saddle poor Mac Maguire with this in the first place? I was working at the BBC when I finally had to admit that I had a disability and it was only then that I began to notice the absolute lack of disabled people on TV and radio. This was also true for books and movies. So, when I began writing (ironically to take my mind off my pain) I wanted to ensure that I did my bit to make disabled characters more visible and that is why Mac Maguire inherited my pain issues.
I must admit that the review made me think. Was the reviewer right in that I was rubbing the readers’ noses in Mac’s pain? After much thought, I decided no. If one of my original aims in writing the books was to truthfully depict a disabled character then I had to stick to my guns. Both Mac and I check our pain levels every morning and many times during the day. What happens during the day is contingent on what those pain levels turn out to be. If it’s good then a short walk or a trip out in the car might be possible. If the pain is bad then I’m confined to the house and watching every little thing I do to make sure I don’t make it any worse. If it’s really bad then I’m lying flat-out on my bed and I’m usually there for the entire day. So pain levels are very important and anyone who has pain issues will be aware of them every waking moment. I am and, therefore, so is Mac.
Why do some able people get so wound up about it though? If I ever mention that I’ve got chronic pain and that it’s quite severe at times, I usually get an appalled look and an immediate change of subject. Do they think that they might somehow get infected with my pain or that they’re doing me a favour by not talking about it? If we don’t mention it then perhaps it will go away. If only.
If you’re disabled, you can feel quite isolated anyway and not being able to freely talk about your disability can make you feel doubly isolated. Being fair, I think that many able people, when thinking of the concept of constant pain, get so thrown by it that they just don’t know how to deal with the person in front of them. Well, here’s a few tips –
- If someone says that they are in pain then it would help if you believed them
- If the person wants to explain what it’s like then listen. You might learn something
- Don’t dismiss someone’s perception of their pain. Doctors are especially good at doing this, ‘Oh, it surely can’t be that bad!’ Yes, it can. With bells on.
- Don’t say, ‘Oh yes, I’ve had a bit of back pain myself and it’s terrible.’ Your slight muscle strain is not in the same universe of pain as someone who has spinal and nerve damage. It’s like comparing a gnat bite to a gunshot wound.
- Pain is often variable so, when someone is in real trouble, don’t say, ‘Well, you were walking okay a couple of days ago.’ You’re implying that they’re faking it and comments like that can hurt as much as the pain does
- If someone is in real trouble then by all means ask if you can help. The chances are that there will be absolutely nothing you can do but we will really appreciate the offer anyway
- Also remember, pain really isn’t catching
The list above isn’t exhaustive and it isn’t meant to be but it might give you a clue of what to do when you work with, are friends with or have acquaintances who have pain issues. Oh and never say that someone ‘suffers’ with pain. We do but I generally prefer to be a little more upbeat about it and just say, in a very hippy-dippy way, that I have ‘pain issues’.
Remember that people with pain issues are not fakes but they’re not saints either. They are just ordinary people trying to cope with something that, at times, can be totally overwhelming. Most of the time we’ll be happily waving but occasionally we’ll be drowning in pain. However, you will never get to see that bit as we’ll be alone, flat-out on our beds and screaming loudly on the inside.
It’s really not nice being in pain all the time but, when it gets bad, I often remind myself that, if I’d been pain-free, then I probably wouldn’t have gotten into writing and Mac Maguire wouldn’t exist. There is always a silver lining, if you look hard enough.