I sometimes wonder if there is – or should be – some sort of final timescale in how much suffering you’re supposed to take. How long are you supposed to go on being blighted by something whilst accepting there seems to be nothing for it but for you to continue to endure it?… Forever? A few years? A few months? And if it is forever, should you be made to suffer more for it because other people don’t really know what it is to live through it?
It seems to me that some people rarely get blighted by anything. Their worst worry is whether they can afford a new iPhone, or buy a bigger house, or get that promotion… The more superficial things in life. Things that a few people out there do not have crossing their minds because they’re trying to do arguably more important and simple things these (majority of?) people take for granted – like trying to breathe, or walk, or suffering through chronic pain, or illness. I envy the people who don’t have to worry about these things – who can walk if they wish, and not struggle for breath, and don’t have to fight chronic pain and illness… But I know they don’t understand or particularly care for me.
I have always constantly felt I’ve had to apologise for my ‘delicate nature’ – I have been plagued by things for most of my life, and I’ve not had the kindest reception from most people because of it. Illness is not something that is dealt with well in this day and age – it feels even worse when its the healthcare professionals (who are supposed to be helping you) are the ones who are telling you not to waste their time and ‘get on with it’.
Right now, I certainly live in a society where 100% ‘wellness’ is the only acceptable viewpoint – anything less and it seems you’re not worth anyone’s time. All health problems are supposedly to be dealt with by ‘being active and exercise’… Have depression? Run. Have back pain? Pilates and yoga. If you’re sick, you struggle into work, and subsequently make it worse – and if its viral, you give it to everyone else (… genius). That might be OK if you have the blues – not clinical depression, or if you have a bit of a sore back from slumping at your desk, or if you have a bit of a cold. That’s not so smart if you’re suffering from chronic pain and illness where all that ‘advice’ is going to make it worse. I notice there is no advice out there – or even empathy – for anyone who isn’t ‘generally fit and well’ – and if you want specialist care, you’re more likely to die of old age waiting for it than to receive any beneficial help.
I’ve been turned away from jobs for being of a ‘sickly disposition’. I have struggled through all my pain to get to those jobs that have been offered. I currently have suffered 10 weeks of extra pain due to a rather particularly bad chest infection – which I made worse by continuing going to work through (including a 3-4 hours round trip of travel each day) until I couldn’t get out of bed anymore. The chest infection itself was blitzed by super-doses of antibiotics (about 2 weeks after it started, when I finally relented to see a doctor), but since then I’ve suffered what only can seem to be post-viral exhaustion and quite severe post-viral coughing. Needless to say, it’s been a very long 10 weeks…
To try and maintain a form of life and to earn a living, I once ran on little but very strong caffeine, codeine and alcohol – all to numb pain, get through each day, and manage to earn some kind of living. I lost jobs because I was unwell, I was refused jobs because doctors told potential employers (at the request of medical records) that I was unwell. I struggled and scraped by, just about. But then, that was in my 20s. You can get away with things then… But that kinds of living takes its toll, especially on a body that already doesn’t work very well. And now I suffer for it, even more. I’ve worn it down so completely from ignoring and covering the pain, and doing things anyway, it seems that I’ve come to the part where the consequences for that negligence and struggle are kicking in.
My problems run like a long toilet roll list, and there’s nothing for it now but to actually be strong enough to say, “Hey, I’m a little delicate and I’m not Superwoman – and that’s all there damned well is to it!” … And not bloody well apologise for it anymore. It just is what it is. That’s my lot, and it’s not for anyone else to question or judge. Nice people will understand we’re not all able to be made well and robust…. And, well, everyone else will hopefully give me a wide berth if they don’t want a lecture on empathy and being unsympathetic moronic idiots who are lucky they don’t know what it’s like to be like this.
After about two decades of increasingly failing health and my body slowly (apparently) giving up on me, it would seem that the amount of time you have to suffer these things is whatever you’re life’s agenda is… But no matter how long it ends up being, it always appears infinite. But I have realised one thing, no matter how badly you might want to feel about not being that robust vision of pure health we seem to be led to believe is the only option that is acceptable, letting others dictate how you feel is always the least smart choice you can ever make in your life.
Remember, it’s your life, not theirs. They don’t have to live with it, you do. Therefore their opinion really doesn’t count. If someone has no experience of something, you can’t have an opinion… If someone who is quite happy bouncing around being all robust and healthy is ignorant enough to tell you to ‘get over it’, remind them of this fact. I had had someone in my life who had no idea what physical suffering or illness was – not a cold or a virus even hit them with anything more than a day of siffles – they were extremely fit, active and healthy, and had little sympathy for my pain… Then they were hit very badly for a few weeks with a devastating (but temporary) condition, where for this short time they suffered some very similar and debilitating problems to what I had. This person made a full recovery and never looked back – but since then I’ve heard not one word of ‘get up and get over it‘ from them. I get nothing but empathy and help from that person now, and they’re always there when I needed… And sometimes when I don’t quite as much. It just goes to show that only those who don’t know will ever think you’re being a weakling or ‘exaggerating’ what you feel. When they walk that mile in your shoes, they’ll never say it to you again.
Until your suffering stops (if you are to be that lucky), then make sure you look after yourself, and other people help you to do so. My very best friend very sweetly tells me I should live in a protective bubble – and I wholeheartedly agree! But if anyone wants to tell me now that I should ‘get on with it’, the best they can hope for from me is to be ignored… I suffer enough and carry enough burdens – I don’t need to carry their judgment and prejudice in my life and have it on my mind as well.
I’m so tired of being here
Fighting through all my innocent fears
I can still feel that you’re still near
And you won’t let me forget
The power you once had over me
I’m still here in your hands
And I can’t understand
Why you can’t still ever let me go
My prison, my walls, my cell here inside
Dear fateful friend of dark tears that I cried
The tangled web of the secrets I hide
Inside my heart, and my mind…