(Sorry, it's Rammstein; I'm not proud)
A couple of weeks ago, when I wrote about the power of knowledge and chronic pain, several commenters raised the difficulty of getting other people to understand. I was kind of surprised that the comments took this turn, when that wasn't what I had been writing about. I was reminded of how much this sometimes matters to us.
I suppose I am fortunate in the fact that I don't often have to explain myself. This is partly my personal circumstances, partly the fact I have a reasonable sense, acquired over the years, of the minimum amount of information any given person or authority needs to know about my health. When the dentist looked at my notes and asked what the Dreaded Lurgy was, I said simply that I had a weak immune system and am very sensitive to the side-effects of any drugs; the dentist doesn't need to know about my pain or fatigue. (I got that bit right but, having been complimented on what good teeth I had, have since come to regret the line, "All the better to eat you with.")
Another point is that, to me, it doesn't really matter if people don't know what my life is like so long as they don't interfere with it. For a long time, I worried terribly about what other people might think, whether people would doubt symptoms they could see no evidence of (oh for a decent rash!). This tended to result in me either attempting to pass, to pretend I wasn't ill, or else giving people more information than they needed or wanted about my condition.
I suppose also, a part of me wanted sympathy; a part of me wanted Aaagh!!! tattooed across my forehead. But I generally find that when people feel sorry for me, they end up detracting from the things I do value about my existence. When we told everybody about our marriage, I received one card which said something along the lines that the sender hoped that one day my health would fully recover so that [...] and I could be truly happy together. Which jarred a little. Okay, so I have this one big stinky thing in my life, but the rest of it is fine. Honest - I am more than happy to be alive - please put that syringe down now, thanks all the same.
Anyway, there are a very small group of professionals who actually need to know what's going on with my medically and the effect that has on my functional capacities. Again, you learn the language to use when dealing with these people, the precise information they need, the gentle tack to take if they get the wrong end of the stick.
But nobody else who matters is going to question my account of things; getting it is an unspoken but entirely necessary condition of giving a shit about me.
Getting it isn't about knowledge or understanding, but simply respect. A friend doesn't need to know squat about my medical condition or feel sorry for me in any way. A friend doesn't need to have some psychic gauge of how I am feeling or how much pain I may be in. Getting it is simply recognising that I speak my truth; that if I say that I am experiencing X, cannot do Y, or that I need to do Z, then that is just the way it is.
After all, even if I was wrong - if I was faking, or exaggerating, or losing perspective on the situation - what could possibly be gained from an argument? People who really care about me are not going to start challenging me or applying pressure unless they have good reason to think I'm in real trouble, really not looking after myself, or putting myself in danger in some way. If they think I'm going to lie about or exploit my health situation, then they have a pretty low opinion of me to start with - or else have such tremendous difficulty dealing with illness that they've gone into denial. The latter does sometimes occur in families, of course, as family members can be terribly protective without being particularly groovy with the whole respect thing.
On the subject of families, I'll turn this around for quite a good example. I remember a bad day last summer when late in the afternoon, I was woken by a phonecall from Rosie. I don't always answer the phone on bad days, but if it wakes me up, I tend to answer it before I'm awake enough to consider doing otherwise. Here is a picture of my sister and the lovely Alexander (any excuse).
It was during Rosie's last few days at work before maternity leave and she was talking to me as she was driving home. She was suffering; the fatigue of pregnancy was taking it's toll, her shape and general discomfort was disturbing her sleep and she'd been struggling at work, standing in front of a class of moody teenagers trying to draw some harmony out of them. She was now driving along the motorway and was hoping to mow the lawn when she got home. But she was so knackered, she couldn't believe it.
It was completely natural for the thought that passed through my head to pass through my head, especially as I was feeling extraordinarily grim. However, I would have had to be a complete and utter arsehole to turn around and say, "Yeah, well I've spent the day in bed, in pretty terrific pain and there's very little hope of me mowing a lawn any time this decade."
Because I have no idea how other people are feeling and I certainly do not have a monopoly on feeling uncomfortable. Rosie was tired and achy, and she wasn't used to being tired and achy, and she'd had to stand up in front of high school students all day and drive home along the motorway; two things I would not be able to do even if I became completely well tomorrow. All I had to do was make it to the bathroom every time I needed to pee; I had had a much easier day, in many ways.
But I'm being honest about this because I do have to check myself. Sometimes it does annoy me when healthy people complain about how tired they are or how much they are suffering with something when they are able to carry on a relatively active life - just as it annoys me when relatively wealthy people complain about how impoverished they are whilst engaged in some project that my budget could never touch.
However, if I respect these people, then it is not my place to judge. I do not have their life, I do not have their experience. And if I care about someone, then it is my responsibility to try to understand how it might be for them and empathise with them; if I didn't have the imaginative powers to do so, I wouldn't have many friends whose life didn't closely resemble my own. Since I don't know anybody whose life closely resembles my own, I guess I wouldn't have any friends.
But I imagine this is the sort of thing which is happening when people cast doubt over chronic pain and illness; people become very precious about their own troubles. After all, the less that other people get by with, the more you ought to be making of what you have - people simply don't like the idea that they have it better than other people, even though all of us have it better than someone. Personally I think I have it better than most of the people I know in some ways, even if they have it better than me in other ways.
I guess people who cast doubt over our experience of chronic pain and illness haven't come to terms with this yet.
Oops, just noticed the time...