https://www.thereforme.uk/p/the-her...r=17hcra&utm_source=substack&utm_medium=email An excellent article in the series from #ThereforME that says just what you feel without having pinpointed the exact problem yourself. I am currently trying to explain to an old friend that yes, I would like to meet up as one of three, but I cannot always be sure that I will be well enough. She hasn't accepted the explanation and I think this article helps me see why. We don't really have the language to describe ME in all its pain, emotional and physical, so our suffering isn't seen. Great article, well worth reading.
This is another excellent post from them. They seem to have a knack of getting really impactful writers and subjects. This one really hits home for me, so often I'm put on the spot and can't do justice to how god awful this illness is and then I'll be lying awake at 2am rehashing what I would have said if I'd got more then a couple of functional brain cells when needed.
I struggle so much with getting this point across to the people around me. And its made even worse because I can’t explain why it works differently because we don’t know that yet.
This blog hit home for me too. The language that exists doesn't seem able to describe, in a way that is understood by the one listening, how it really is. It is all minimised. The words describe a world and being in it that I don't share any more and there are no words or concepts that easily explain, to another without ME, how we live. And as @Utsikt says we don't yet have an explanation for why we are as we are which makes it all much harder.
That's what I mean when I say that the psychobehavioral ideologues, and physicians in general, don't believe that our symptoms our 'real'. They mean something else entirely. They believe in what they mean, they say what they mean. They just have a different meaning for it. They also lie, this is a necessary part of the ideology, but even when they say that they 'believe' that our symptoms are 'real', it's simply that their meaning of both 'symptoms' and 'real' aren't the same as what we mean. They don't know what we mean. It actually means nothing to them, baffles them completely, has no overlap with their expectations and experiences of reality. This is actually a common problem, especially about political things. This is used a lot. People use words that have a precise meaning, like freedom and fairness and so on, and they do mean what they say when they use those words, they just have a totally different interpretation of what they mean. There are lots of people out there who hate good things, and love bad things. There is a core of shared human experience, but it's very small. In fact, this is probably the default when people divided by misunderstanding talk about it. Like explaining color to people who have always been blind, it simply doesn't work. The industry has created all sorts of fake instruments to make it seem like they have the first clue about what we mean, but we may as well not only speak in a different language, we could be a different species with a completely different culture for all that they have a damn clue about what we're telling them. Physicians only understand the experience of illness through pathophysiology and clinical definitions, they have no other way, other than the occasional personal experience allowing them to know better. The rest is just winging it, and winging it on 'soft' skills almost never works. It's far too hard. And this is why diversity, a term that repulses reactionaries, is so important: they simply can't know, they need us to know, but they can also bypass all of this and simply invent whatever version of reality they prefer and impose it on us, because they have the power to do so. And they have. This is how most societies function: a few impose their needs and wants to the rest, usually at the expense of their needs and wants. It's the most common social structure, humanity hasn't outgrown this barbaric nonsense.
