Please understand that you don't understand

'Oh, I know what that's like; my friend used to have it!'

Just one of many phrases that tends to upset me. Particularly if followed by something along the lines of 'He used to go to all the protests!'. Of course I don't actually say anything on the occasions that people say something like that to me. I know that people are trying to relate, and trying to be nice, but they don't realise that they are actually being rather tactless. So, I'm asking you to understand that you just don't understand.

I know that probably sounds very arrogant, but it is not.

Among people who have CFS / M.E., those experienced at least, it is generally understood that even among one another we do not all have the same experiences, we do not all share the same symptoms, we are not all on the same medications; we basically cannot understand each other. But we respect that. When one of us says we are struggling with such and such, we make allowances for it.

I spent this afternoon with Trudie and Bev. The three of us have M.E.. We are all aware that we inevitably struggle with energy levels, and that spending time together will take a toll on our condition. We are aware that Trudie is the worst affected, and Bev the least. But the way in which we are affected varies significantly. When Bev is exhausted she spends hours asleep. When I'm exhausted my entire body starts to ache and tremble. We simply mutually accept that we have different problems, and that we'll express if we are struggling with anything or need help.

So, if you know someone who has M.E., or has had M.E., please understand that that does not automatically mean that you understand me. To be honest, it's highly unlikely that you understood your friend to start with either. Even among one another we struggle immensely to describe the symptoms we go through, and because it changes from hour to hour, day to day, what we described to you yesterday may well not stand today anyway. So I'm asking of you, please, instead of trying to relate to me, or someone you know who has M.E., just take us as you find us. You can't presume, and to some extent you can't prepare.

Please don't misunderstand me. It is not that we seek to be aloof and mysterious; we really honestly do want to be understood. It is horrible having to try and explain what we are going through over and over again, especially when we don't really understand it ourselves. A little patience please.