Recently I was approached to take part in a radio programme on MS and caring which is planned to be broadcast on a regional station sometime in the near future.
A producer had come across this blog and had wondered if I’d like to give my account of having MS in my life and being a carer. I must admit that it was a tempting offer. Perhaps I might get the opportunity to debunk a few myths about MS and disability? I might also get to tell the story of being a carer. About how, for me, they are full time responsibilities – more than full time. Maybe I could redress the iniquity felt by carers when faced with the dreadful press we get from various corners of the media. It was an appealing idea but it didn’t take me long to decline it.
Why? Because while I’m happy to write about how being a carer affects me – and that’s what this blog is – I’m not prepared to concede control over what comes out about MW. If she decides to say something herself, that’s fine. But it won’t come from me.
While I’ve given a little information out about me – and us – I like being able to hide behind the anonymity an on-line blog gives me. I may change my mind in the future but this is how I feel now. If I was going to participate meaningfully in a radio programme, it would have been ludicrous to say “I’m not going to answer such and such a question” or “I’m not prepared to tell you that about me”. Particularly if I wanted to give a full and honest account of life as a carer, which it merits.
I’m also wary of people’s reaction to what I write. It’s a little scary putting your head above the parapet and opening yourself up to the opinions of others. I’m not going to pretend that everything’s a bed of roses in life, and sometimes I’ll want to write something that’s critical of the life I find myself/ourselves in, or even critical of MW. I have a lot of thoughts born of frustration and this blog allows me to vent those thoughts. And sometimes the subjects I don’t write about are the ones that affect me most deeply.
I’ve also become aware that, very occasionally, people will project their perceptions or assumptions of my character onto me, which have been mostly positive but don’t take into account that this blog describes what happens to me. It doesn’t give the full picture of who I am. I’m not naïve, I can imagine the stick I’d get if those people were to think that the real me doesn’t stack up to their perceptions. I’m as sensitive to criticism as anyone. More so – I don’t have a very thick skin. Right now, I don’t think I could handle the grief that might come from exposing everything about me and my life on a radio programme.