Time Has No Meaning…
Even after over 30 years of struggling, NHS Services and are still far too difficult to obtain.
The more I try to write about living with a multitude of mental health difficulties, as well as physical ones, the more I realise it seems far too complicated to do so. And that multitude of problems and difficulties are all so tightly entwined there seems to be no distinction between them anymore.
Living with them has taken my whole life. Is my whole life. Has always been my whole life.
Deep depression, severe anxiety, agoraphobia, PTSD, suicidal ideations, prior attempts at suicide (entirely unsuccessful, in case you were wondering), former sufferer of self-harm and eating disorders, a current sufferer of a multitude of other phobias too long to list individually… I have lived with these for so long I would not know how to live without them. Of course, therapy could change that… Only there isn’t any available. Instead I struggle on, alone – except for the help of a few long-suffering family members and one overly-lovable dog.
I was “different” my entire life. What I didn’t know at the time was that I had Asperger Syndrome (AS). No one did. Not until I was diagnosed last year – about 30 years too late. Back then, when I was little, it was the 1980s; mental health, autism, and complex behavioural problems were swept under the carpet and ignored. It was still no different to the 1960s, when my father was told by his GP to “get a hobby” when he presented with severe depression at just16 years old. It was the dark-ages of mental health services, and those days for too many were very dark indeed.
Skip forward to just 20 years ago: It was the early 1990s. Teachers were joining in with the kids in bullying me, and the head teacher thought it was something to be ignored and smirked about. At my GP practice I was told “children don’t get depression”. When I was then sent to Child & Family Services (mainly because I refused to go to school… or anywhere), their response to my anorexia was to “get a cook book”. They just ignored the prior attempted suicide and suicidal ideation. I was a 13 year old on heavy doses of Prozac for severe depression, and they just wanted to talk rubbish about things that just weren’t important. They were just… appalling. After three long years, I was finally sent to a residential adolescent unit just as things hit crisis-point. But the referral letter from C&F for me stated I was, basically, “unhelpable”. I was 15 years old when I read that. It resonated with me for a long time. They were the most abominable service I have ever encountered, and I left there with more scars than when I went in because of the way they treated me.
My mother was a savvy nurse, and a pit-bull when it came to getting me something that wasn’t a complete farce – and she worked hard to get me away from that place, eventually into that unit. If it wasn’t for the dogged determination of my parents, particularly my mother because she was the one home to take me everywhere, I wouldn’t have got anywhere. She learned the hard way she would have to do such things for me from the beginning. When I was a baby, she knew something was wrong, but the health worker turned her away with a flea in her ear and a wave of her hand, saying, that I would “grow out of it” (and three decades later, I’m still waiting for that to happen…). My mother was a 25 year old mother of her first child… and ignored. It was 30+ years later when she got her vindication when I am finally have the diagnosis I should have had then, for AS. An early diagnosis could have changed our lives… but such things as an open mind and knowledge about such things wasn’t available in the back-end of North Wales back then.
Now it’s 2015… It should be different. But it’s not. Not really. Not for me. But then, I’m an adult now, and fighting a different battle. Ironically, the focus is now on the children. Hopefully, then, they won’t grow up quite like me.
For children it now is quite different when it comes to these things. Even if the support system still is a long way from being even close to perfect, the awareness that children do “get depression” is there. Early intervention is drilled into every health worker, ASD is becoming more known and awareness is growing (particularly for girls), there is online support now, and people to reach out to. Social Media have key word algorithms in them to detect possible problems within posts and people who will reach out if there is a hit. Governments are even pledging more to help – it’s at least something that they’re actually saying it and building more awareness about these things. Teachers now look out for mental health issues, instead of joining in with the bullies and helping to cause them.
The online and media revolution has changed so much now, it’s a different world, and I am relieved to see it. Mental health issues are now plastered all over the media. Celebrities are jumping all over themselves to tell their own stories, to help, to prove that having mental health problems is actually normal, and doesn’t have to be a life-breaker. That it doesn’t need to be stigmatised and it shouldn’t be kept quiet about. Children at least now know of a good handful of people who have suffered like them – unlike me at the same age, they know they are not alone.
But children with Asperger’s, and children with depression, and children with mental health problems… well, they all grow into adults. And there’s nothing there for them when they’re adults with these problems. Whether it’s one of them, or all of them. Get it right when they’re kids, and they can grow up and probably manage quite well – probably better than most others. But get it wrong… well, you end up like me. I got broken, and now there’s no one around to really help patch me back up again.
Chronic pain and the medication I have to take for it took away my tiny iota of ability I had to cope with things. I wasn’t anywhere near great before, but now it’s like I’m back to square one. Unlike before, though, my GP now is amazing – but there is nothing he can do to help, simply because there are no services. They are so limited (at least in my area) that they’re not worth bothering with because they won’t help. There is no support to help me deal with living with Asperger’s because I’m not a child. There is no support to help deal with my chronic pain and linked depression. I had to wait 9 months to see someone to request CBT… then was told there was a 12 month waiting list, only then to be seen for just a handful of sessions. Is there even a point in trying?
Because of all of these things, but mainly because of the pain, I can’t work, or do the things I used to love doing, causing hopelessness and feelings of pretty bad depression. Even suicide ideation… really, who would want to be stuck like this? I’m no longer daft enough to act on them, like I did when I was a child – I’m an adult now and my own person, including not listening to such things in my head. But still, it’s traumatic to have such thoughts in your head at all, and it does take an awful lot of effort to send them packing all the time, every day.
And I would like to say, “it wasn’t always like this, though”… except I can’t. I have managed to be relatively “high-functioning” because I was able to intellectualise my way through everything, but the pain just brought it all crashing down again and the meds took away my ability to intellectualise things by making me disjointed and disconnected from most of reality – a very frightening thing, particularly if you have AS, it would seem.
There is a lack of resources and nowhere to turn. The worst of it is that it isn’t just the mental health services that I can’t access, but also the physical health services. For nearly 2 years I have struggled with a still-unidentified condition causing extreme chronic pain, causing severe depression and “flare-ups” in my AS and more “meltdowns”. If they could take the pain away with a diagnosis and treatment, I would be in a better position to deal with my psychological and AS problems because I would no longer be depressed because of the pain.
There seems to be nothing out there that helps people with complex problems like this… In fact, there’s nothing much out there for any kind of problems. The NHS is in crisis, and its funding and organisation is all over the place. However, although Mental health and related issues are facing a crisis now, that is because people are now more aware of them than they’ve ever been. Instead of suffering in silence, they are going out and finding the help they need. I take some comfort in knowing that if I was born today, my mother would not be facing the same ignorance as she did over 30 years ago, and if at 13 I was taken to the GP with depression, they would take it seriously. I would be not be told to deal with eating disorders by getting a cook book.
Unfortunately, supply didn’t keep up with the demand. As a result, we are now in this mess – but I am regardless so very relieved that these problems are being highlighted and acknowledged, even if it does mean long waiting lists for services… because back when I first needed them, these services didn’t even really exist to even have waiting lists to get on.
It’s one step at a time. I think if there had to be a choice, we made the right one by standing up and creating demand by acknowledging we are struggling. I think the one thing we can take away from the high demand on services is that now we are willing to step out of the shadows as say help me. The NHS services available to help might still be unfathomably archaic, but at least social attitudes are changing, are stepping into the 21st Century, are willing to look at us and see humans instead “insanity” – and for that we should be proud of ourselves for standing up and changing so much since I was born.