I find it interesting the mixture of feelings this word can stir up in the face of anything truly challenging. In this case, a long term, little understood, health condition. I’m not just talking about acceptance from self either, but from others too, and that throws even more difficult emotions up for us to try and come to terms with.
In relation to the desired – and where medical professionals are concerned, much needed – acceptance from others about just how this illness effects us, how serious it can be, it touches on all sorts of horrible insecurities we may be harbouring already, about our self worth, others expectations of us, our value in the world as a person who can’t “do”or “contribute” to society… ugh! It’s really not an easy place to be, knowing as I’m sure most of us have experienced to some degree, that there will be some people who don’t get it, and some that never will.
The instinct is to chase them with the facts, to find a way to communicate to who ever it may be, your reality. The trouble is, that doesn’t always work. Some folk are better at climbing even momentarilty, into the shoes of another and some just aren’t, or they have too much of their own battles going on to be able to afford it that kind of focus. Or, all they see is your insecurity and they react to that instead of what you’re trying to say. As mammals, we all do that to some extent. We’re wired to judge, often wrongly. Some can get past that, some can’t.
I do wonder, when the inquest is heard into the death of young Merryn Crofts next month, and they should conclude that she did actually die from her ME, if this will have any impact on how people view this illness, and whether they might take it a little more seriously. Her’s won’t be the only death but it’s one of the most publicized currently, because she was only 21. At the moment, officially at least, we don’t know how many lives it has claimed aside from suicide. The studies haven’t been completed yet. Even if the number is small, this is something else we ourselves will need to come to terms with as well. But it may at least shine some light on the need for research, and give the doubters something to think about…
If anything, the challenge for us is to somehow be able to let it go of the need to be understood. Here, it’s us who somehow need to accept that there will be some people who just can’t really get their heads around it as fully as we need them to. Big problem when that person is your other half, or members of your family! I’ve read some heart breaking stories along those lines. I’ve had my share of people not getting it, but mostly, my family do, even now that my mother has dementia and I have to remind her every time I talk to her if she asks, she still responds with empathy, and asks for the millionth time ” But isn’t there anything they can do?” Bless her!
In this respect I KNOW I’m blessed, but that doesn’t make it any easier when I do meet with a lack of comprehension, or even judgement, from anyone else, be it doctors or friends. It is very hard to accept. It is very hard to feel that you’re in all likelihood being misunderstood. It’s one of my pet hates. If anyone needs to find a way to be at peace with that one, it’s me! But I don’t doubt that we can all relate to that feeling at one time or another, it’s an extremely common human malady, sick or well.
Then there is self acceptance. Acceptance of our conditon, and of it’s limiting effects on our lives, acceptance of unpleasant symptoms and pain. It’s actually far more important that it comes from us than from others, at least in terms of not giving ourselves a hard time about being sick, but far more challenging to accept it’s strangle hold upon us. To accept our limitations minute to minute, because they can change on a dime, is also pretty tricky. But to push beyond them can be dangerous for some of us, so we have to at least try.
Let’s just remind ourselves here that acceptance does NOT mean resignation. It doesn’t mean giving up. Although sometimes it takes a sort of giving up to really let go. Often people will say that it was when they reached their darkest hour and finally stopped fighting something, that, rather than the monster winning and swallowing them whole, they found instead a moment of peace. The monster doesn’t disappear, somehow you’re just not afraid of it anymore… this can be a permanent shift, or it can come and go. I tend to find the latter is true, for me anyway. At times I can accept things, other times I’m raging against it like it’s the dying of the light! There’s a place for both.
So, to accept is not to give in, be it either self acceptance or the acceptance of others. It’s about being with, rather than trying to do something about I suppose. Sometimes you can find small moments of enlightenment about yourself when you stop reacting for a moment and just accept the desire to. Sometimes it can teach you some useful insights. But not every time. Something else to accept. 🙂
One of the other things that makes acceptance challenging with this condition is the sheer lack of knowledge about it, and therefore its predictability. This is true on a day to day basis experiencially anyway, it’s very hard to predict even for those of us who have lived with it for years, but also from the medical establishment, and the very nature of the thing, case to case. For some, it’s severe from the get go, Whitney Davis severe. If you don’t know who that is, here:
(I can’t begin to imagine how Whitney can find any kind of acceptance in his cage. I can only hope that like many of us, some of the time at least, he just moves one moment to the next and is able to find some escape deep inside of himself, because that’s the only place he’s got to go.)
For others, it becomes severe because they’ve pushed themselves too hard, usually because they didn’t know not to, or where the limit was. None of us are clear on that because the boundaries can move, day to day, year to year.
Even for those who are able to semi function, or even work, this is something we have to be constantly aware of, and there’s no way of telling quite how far we can go before we accidentally break. It can take years of self study to master the warning signs, and then the goal posts are shifted by something on the inside and you don’t know where you’re at again!
It’s harder to accept something so unpredictable, because you’re often having to accept shifting levels of funtionality or differing symptoms as time goes on, So just as you think you’ve adapted, you have to start all over again.
If you do manage to get a fairly consistent handle on it, sooner or the later, the question that naturally arises is, right, can I actually recover from this? Can we actually get well? Do we dare accept that as a possibility?
I include this under the heading of acceptance because, just notice how you feel in responce to that question if you’re some one who has been unwell for a very long time despite your best efforts. If you’ve seen those posts on social media from some one who got well through research and self treatment (it generally has to be self treatment because, here in the UK at least, there isn’t anything else) and they’re trying to share their wisdom with us so that we can do the same, does a part of you feel defensive? Is your first instinct to think that it’s got to be a scam? They do exist after all. Even me, who has never given up on the idea of recovery and has always thought it possible at least in my case, I have to say a part of me squirms. As much as we want to get well, this idea can actually be hard to accept.
Here’s my theory as to why. We spend so much focus on having to prove to people, our doctors, the benefits agency or our bosses, even those we are closest to, the world in general, that this is a bonified serious real life condition that deserves way more understanding and research funding than it’s currently getting, that to suggest that it can be self cured, somehow suggests that it’s not really all that serious, especially because most recoveries are self administered without much in the way of medical intervention. (Again, this is because we don’t really have a choice, even under a practitioner like Dr Myhill, you’re mostly self treating at home.)
Let me put it in perspective for you right now. Cancer is in many cases serious, it can kill you, but people can and do recover from that albeit with drugs, some without on occasion. That it’s possible to do so, in no way detracts from how serious and deadly it can be. The only difference is, there are medical treatments. So why should suggesting the same for ME/CFS feel the way that it does? Because we know that, unlike in the case of cancer, I think it’s safe to say, there will be those saying: ha, see, ‘so and so’ got over it all on their own, so why can’t you?
I want to quickly say here that I don’t automatically believe it is definitely possible for everyone to be cured, at least not without serious and effective medical intervention and that doesn’t exist yet. That in itself is hard to accept, especially for those who are severely ill. But for some of us, yes, it may be possible. Not easy, but possible. Yet we’re so used to being judged that we can actually feel guilty for feeling better, as if we’ve been faking it all along, let alone accepting that we might even be able to break free altogether. This is the joy of having a controversial and little understood complex conditon, that frankly is going to take a paradigm shift from the medical establishment before they will get a real Big Picture grasp on it and how to treat it!
However, to those of us for whom it’s even possible, it’s pretty tough. We have to accept (there’s that word again) in some cases, more (and often further limiting) changes to our lives, diet and habits, that may or may not help our bodies to have a chance to gain some ground rather than be constantly up against it in the energy stakes. It generally costs us more than we have to spend on it, and it’s going to take a couple of years if we’ve been ill for years, based on the approaches I’m in any way familiar with anyway. And, it might not work for us. We might not be one of the lucky ones.
It’s a lot to take on. A lot more acceptance needed. Oh God, I don’t think I’ve got any acceptance left to spare!
You can see how key acceptance is then, can’t you? For all aspects of this situation. You can see why so many of us are meditating like lunatics to try and find some! I have to say though, that’s not bad advice, it works for many. But find it where you can, however you can, whatever works for you. And accept that fear of judgement is natural, but it doesn’t mean that anyone is right to judge, or that they have good cause. They don’t. No one has that right who hasn’t walked in anothers shoes, and even then, it’s different for everybody.
Accept the fear, and keep doing what ever you need to do to survive DESPITE it. Sooner or later, the truth of things wins out, maybe sooner if we stop apologising for it. Maybe sooner if we accept it as much as we can for ourselves, and accept the days when we can’t as well. Maybe those around us will be less quick to judge when we quit judging ourselves quite so harshly, and are just calmly honest, about everything and without apology.