My usual technique for dealing with illness is to ignore it. Well, it might just go away. And I’m used to blaming the psychological for a lot of my problems, for example, I say, ‘I’m lazy’ or ‘I can’t be bothered’. But I’m growing in awareness, both of my main physical condition (ME) and of myself. I know now that I’m not lazy but I’m still reluctant to take on board the fact that perhaps that mongrel-beast does actually cause me quite a few difficulties. I suppose, perhaps, it partly goes back to that very screwy idea of ‘deserving to be ill‘. I just tell myself, and anyone else, that ‘I’m just making a fuss, it’s nothing really’. And that’s how I see it and how I live my life.
But the problems don’t just go away if you try to ignore them. They’re still there. Misunderstood, mislabelled, mismanaged. It’s not a good recipe for success. I have to face up to the fact that the mongrel-beast is ever present, that all those queer symptoms that irritate frustrate and confuse are probably its fault. Others, unfortunately, have just become my ‘normal’, I’m so used to feeling one way or another, one thing or another, that I scarcely appreciate that most people don’t actually feel that way, or ‘thing’.
I don’t like ignorance. I do agree that knowledge can be power. It can inform and educate. And that’s what is desperately needed in these neurological conditions and ‘invisible’ illnesses such as ME. It would be hypocritical of me to continue denying its existence in my life. I cannot preach the need for awareness when I am steadfastly refusing to be aware.
Awareness does have its downsides, of course. It can overwhelming, frightening. It’s almost like that moment when you first receive a diagnosis (not that ever happened in my case), the ground becomes unsteady and you find yourself confronted with a whole new reality, future, lifestyle … everything. This condition is all-pervasive. Being an ostrich doesn’t change that.
I preach also for tolerance, and I don’t necessarily use the word in the modern sense of ‘permissive’, for me, it’s a generosity of spirit and understanding and appreciation towards your fellow man. How can I expect others to be tolerant when I am so hard on myself? Again, it would be totally hypocritical. I don’t do hypocritical.
Something has to change. I have to change.
I have to face up to reality, to be tolerant to myself, to offer myself the understanding and appreciation that I so willingly give others. I don’t make excuses as if they have no responsibility for their actions but I do understand and appreciate that there are, at times, extenuating circumstances. I don’t get upset with you personally when your behaviour is generated, triggered by illness, stress or something out of your control. I just ask that you acknowledge it and, if necessary, apologise afterwards. Do I do the same for myself?
I preach also inclusion. I don’t think that illness or disability should ever be cause for exclusion. Sure, you may have to do things differently or a different pace, but I don’t believe that illness or disability is ever a write-off. Yet, I hide my own problems. From shame? Perhaps. Because I want to exist in the world on the basis of other terms, preferably my own and not this mongrel-beast’s? Perhaps. It’s kind of complicated! But inclusion means allowance and I’m not allowing myself to be or to show the actual reality. I am discriminating. That is not tolerance. I am judging. That is not kindness.
I cannot hold myself responsible for something beyond my control, I cannot take responsibility or blame for a life or illness that I never chose. Or even probably provoked. I have to be forgiving.
And yet, even as I come to appreciate the all-encompassing nature of this mongrel-beast, I can also start to differentiate, between me and it. I can see more clearly who I am and what the illness is. Believing, understanding and appreciating actually frees me up. I can be true to myself. Just in difficult circumstances. I don’t have to be the illness, I can be myself with an illness.
And most important? I can start to take myself seriously. Sometimes, it feels like no-one has ever taken me seriously. And perhaps as a child, that does have to start as an external process, someone has to believe in you. But as an adult, it’s up to me. The first step is that I have to take myself seriously. Then it’s up to everyone else. Again, there’s that hypocrisy. I cannot expect others to take me seriously when I am not taking myself seriously.
So today, I compiled a list of my symptoms, all the ones that I have ever had thanks to mongrel-beast. It was hard work, not least because mongrel-beast isn’t very keen on cooperating on such cognitive tasks (it doesn’t even like spelling or typing) and also because I had to face reality. Reality is not the nicest thing in the world. It’s kind of like looking in the mirror with your glasses on. Not good. But you can’t always avoid it.
I’m going to post the list separately because it is rather long and no, I really don’t expect any of you to trawl all the way through! (Especially as I rather suspect, it’s full of mistakes and typos). Instead, it’s going to be a sort of testament. A reality check, if you will. For myself mainly.
I worked through the symptoms section on the Hummingbird website, it’s thorough and comprehensive. I could say that I have learnt lots of new words but the reality is that I have immediately forgotten them. I’ll try to link definitions to some of the stranger (mostly Latin-ish) terms.
I’m also quite glad that I went with bullet points and not numbers, it could have got a little (actually, very) frightening!