Stupidity: You’re not alone…

I’ve been thinking this week about the latest topic for the chronic babe blog carnival – the stupid things that people say about chronic illness. It’s interesting because there are so many of them – “you don’t look ill to me?!” being a fairly widespread one I think we’ve all received, or at least a variation on a theme! I think that sort of comment is mostly from people who aren’t thinking, or are surprised and don’t know quite what to say. I wonder if there is some sort of socially acceptable response to something like cancer “oh no – I’m so sorry” (though I suspect there are a number of stupid things people say about that instead!) whereas for invisible things people don’t quite know what to say. So they say the first thing that comes out of their mouths that’s supposed to sound consoling – “but you look good?”

Some of the things people say, however, verge on the offensive. I never quite know what to say to the people who think that perhaps if I just pray harder, or had been a better person God might not be punishing me. Yeah.

No.

I feel like I ought to share a little xkcd cartoon at this juncture, because it made me feel better:



I think the most ridiculous thing anyone has ever said to me about my creaks was, disappointingly, a GP at my old practice (You may note I changed practices pretty soon after all this occurred!). I’d gone to see them a few times because I was so tired and hurt so much. I’d been sent for a blood test for anaemia, and it had come back clear. I was a tired and upset that I was being brushed off, and he said that they “often see these symptoms in teens and early twenties, and that I'd probably feel better when the summer came”.

I was a bit surprised and pointed out I was over 30 and this had been going on now about a year, and he sort of stuttered a little and said it was clearly a sign I was young at heart. I thought - oh, f*ck off. And burst into tears. I pointed out I didn’t feel very young – I feel about sixty and I fall asleep every time I am sat still. He said, “there there”, and practically shoved me out the door into the waiting room, still in tears.

I went home somewhat disheartened. Things got worse. So I finally got up courage to go back to the doctors – a different one in the same practice - and said, in a nutshell “I know I’m not well. Refer me to someone who knows what they are doing. I have narrowed this down to be a rheumatologist, because you lot think I’m making it up. I have private insurance so you don’t even need to work out who fits in your budget - just write the bloody letter”. I don’t say those words *exactly*, obviously, I am a nice girl, but I wish I had because the man proceeded to made me cry, asked if I was having sex with Dave (At 8.10 in the morning!!!) and then announced that this confirmed that I was either making it up, or making a supreme effort.

The word I thought isn’t for the eyes of nice people. But I got my referral, and a diagnosis, and things improved in the end.

The thing is though, I don’t believe that the stupid things that people say are just aimed at those of us with chronic illness. I married a man with children, so I am officially a wicked stepmother. I look after them 7 days out of 14, and have been looking after them for half of the younger one’s life. I love them beyond measure and would do anything to make sure that they are safe, well and looked after. The idea that any of either of them might come to any harm makes me feel sick to my stomach. Even creaky I have arrived 20 metres down a swimming pool in seconds to drag one of them out from under the water with the biggest burst of adrenaline I have EVER experienced. And yet I’m treated like I know nothing about looking after kids (because I haven’t been looking after two for knocking on 6 years), and that I don’t love them. I regularly hear “you can’t possibly love them like a real parent, they aren’t yours”. You wouldn’t say that to someone who had adopted a child, why on earth is it ok to say it to me? I’m not a real parent because they don’t share my genes – yet I’m the one washing their clothes, helping with homework, ferrying to school and buses, sewing badges on kit, tucking them in at night and talking to them about periods. I make their packed lunches and rearrange my work schedule so I can be home when they are. Even Dave’s ex-wife appreciates the amount I do for them; yet onlookers (including close friends) cannot see past the fact that I did not give birth to them. They think that my relationship with the kids is worth nothing, and that I do nothing for them; that they are just some sort of accessory to Dave.

I’m fairly certain, that you, reading this will be going “what nonsense!”. But I wonder if you’ve ever seen a step mum at the school gate, or in a circle of friends and dismissed her. I think I may have been guilty of this myself in the past as a child – it’s what we’re brought up on, a diet of Disneyfied cackling wicked stepmothers , Brothers Grimm tales and J Lo being a step monster.

I know I’ve gone off on a bit of a side track here – but I think it’s worth pondering. I think that we feel we are alone in having stupid things said to us – but I suspect people say stupid things to all sorts of people about all sorts of things, and in every room there will be at least one person who hasn’t thought through what is coming out of their mouth at some point. There are stupid people everywhere saying stupid things: we just happen to hear the ones that affect us. What is harder sometimes is to remember to hear the things people say that aren’t stupid – the people who really matter and care for us rarely say the unthinking things. My new GP trusts my words and believes me, and looks after me as much she can. Dave carries me up the stairs when I can’t make it on my own – sickness and in health. The kids tell me they love me, and think the world of me. And those are the things that matter.