Two years too long

I try not to let things get to me. I have a tendency towards strong emotional responses when faced with unfairness, injustice or blatant prejudice, regardless of whether it’s directed at me or others. I try to put that in a box. Unless I can take action to change the situation, I do my best to ignore realities that hurt me to feel. But still, every so often, something will set me on fire.

I saw this, from the NAS:

And it made me SCARY mad.

I’ll never forget the night I realised I was autistic. I was walking home from a concert I’d cried all the way through, with the friend that had kept quiet all that time. We walked three miles in the middle of the night because I said I couldn’t face the bus. I dropped a line about probably being “a little bit autistic”. And he said, “yeah”.

I got home and looked it up on the internet. Luckily I found the National Autistic Society, rather than anything more sinister. But still, it was about 2 weeks before I could really stop crying.

The concert was on a Friday. I spent half the night reading up on autism – seeing myself everywhere, my face reflected in the little things. I read about how to go about getting a diagnosis: what to tell the doctor and how to prepare. I made notes, volumes of notes, about how I fit the criteria. I wrote constantly. I cried, on and off. I slept in between.

There were people who scraped me up off the floor during that time. They could be on the phone, made sure that I ate. They came over when I needed them. Although I hadn’t even known myself before – I didn’t know how to be a friend – they were there for me. They were friends, good friends, even though I wasn’t. I didn’t deserve them, and I was so, so lucky I had them. They probably saved my life. But that’s not what this story is about.

I went to my GP the following Monday. I sat in the waiting room for an hour, holding everything in. Before I knew it didn’t matter if I rocked, it couldn’t hurt anyone, I held myself rigid. I clutched the printout I’d made: a bullet-pointed list under each criterion. I took it in with me, and burst into tears.

My GP was great. She took the printout to read. She didn’t let it faze her that I cried, that I was strangely calm and coherent while I cried. She took me seriously, and told me she didn’t know what the procedure was, but could she phone me. Then she phoned me that night after work, and said there was a form for referral. Since I knew myself best, would I like to fill it in and send it back to her? A couple of weeks later I got the letter from the NHS saying the waiting list was long, but I was on it. And things went quiet.

It was well over a year before I heard from them again. The diagnostic service was amazing. They treated me with compete dignity and lack of fuss, accommodated my anxieties as a matter of course, and gave me all the right information to feel comfortable. They knew what I needed without me even having to ask! But by the time I had an NHS diagnosis, bringing with it precious access to the local autism support group, it had been almost 18 months.

Two years is too long.

In the meantime, I’d been lucky. Incredibly, impossibly lucky. I was able to get funding for a private diagnosis. Within six months of everything falling apart, I had official recognition. I had documents that entitled me to support at work. I had access to some limited expertise. No longer stranded, with this glimmer of a safety net, I could begin to build from scratch for myself an identity that was real. Yet for those six months, I had nothing. I was nothing.

I kept my job. I kept my house and my car. My family supported me. The people around me, although they never knew it, kept me from suicide. I was given time and space to recover. I built a shell, a hollow of myself – and it somehow held. For six months. I would not have survived for two years.

Two years is too long.

My GP did everything right – more than right. She listened to me, read what I’d written, realised I knew what I was talking about, and made it easy for me. Not everyone has it that easy.

I have friends, now, seeking diagnoses. People I care about, stranded and struggling. You can’t hope to get a referral unless you’re struggling. One’s GP flat out says she can’t make a referral. Another can’t even get a face-to-face appointment with the GP: only a phone consultation. I couldn’t have had that conversation over the phone – how can they? Of course: they can’t. I walked into my GP surgery and had a referral within two weeks. They’ve been fighting these barriers for months. And that’s before the clock even starts.

Two years is too long.

This isn’t a political campaign from the NAS, in the sense that they’re supporting any one particular party, but it’s the first campaign that’s ever really hit me. If you’re in the UK: register to vote; then do. I’ll vote. It’s small. It’s all we can do.

When there is no help

TW: suicidal thoughts; self harm.

A few years ago I got to reading and liking the work at Beauty Redefined. These twins have done some impressive work looking into attitudes around body image and body shame. I love the way their articles focus in on particular behaviours, and then they don’t stop there – they talk to me in my language about how to fight the prejudices and preconceptions of the world around me. I like that thinking!

For obvious reasons, Beauty Redefined focus a lot of their work on women. But the article they shared on Facebook today was about a man. Wentworth Miller. In this article he talks about the cost to him of mass-media body shaming whilst fighting an episode of depression which, not for the first time, he only “survived”.

So I admit I never watched Prison Break and have never heard of this guy before today. Remembering names, particularly actors’ names, isn’t really my thing. But this article really got to me. I’ve not had the chance – or the courage – to read much about suicide (except for the gooey happy clappy stuff about “don’t suffer in silence, we can help”, provided courtesy of our glorious NHS *). I have, of course, heard a sprinkling of those silly misconceptions perpetuated by people who have no concept of that moment when it begins: the still, deathly quiet contemplation of the need to end your own life. So they asked him: “was it a cry for help?”.

And he said: “No. You only cry for help if you believe there‚Äôs help to cry for.”

That is it. That is it exactly there. If I were in that place now (which, thank heaven, I’m not), it would have been a punch in the gut. I would have cried all night, and the next day, and probably the next night as well. I would have looked at the knives in the kitchen drawer and wondered whether that sort of pain would help me stay alive in the face of this fundamental truth. Because that one person knows this thing, and he said it out loud, and that makes it real.

Being suicidal isn’t an emotional thing – at least it wasn’t for me. It’s cold and dark and clear, like staring into still water on a silent night; and it’s utterly rational. It’s not desperation – it’s grief. You know, more clearly than you’ve ever known before, that this is the only option left to you. You feel that calm, quiet loss – such a waste of life. You’re grieving for yourself, before you die.

I am a strong person. I am driven and resourceful, and God help me nothing will stop me if there’s any other option worth trying. But sometimes there isn’t. Sometimes it’s the end of the day. You’ve talked to your manager and their manager about expectations. You’ve talked to HR about accommodations. You’re running and sleeping and eating healthily, when you can choke down the food. You’re exhausted and you’re scared for no reason, of nothing and everything, tomorrow and forever: you can’t make it stop. You’ve seen your GP and asked for advice, and she’s given you pills. You have talked to everyone you can; you’ve begged; you’ve told them you’re out of options, that you don’t know what else to do.

But there is no more help out there. There’s no counselling or therapy available to you – at best there’s an 18 month waiting list. Signing yourself off work is a thing that you cannot afford. You’re in pain and frightened. You’ve cried yourself to sleep for days on end. You cannot talk to friends or colleagues, or even tolerate the presence of people; work is a place of irrational terror. You know the pills will break your body, but not taking them will break your mind.

The GP is good. She asked you: have you been feeling depressed? She asked: are you feeling suicidal? She looked back: have you been suicidal before? She made you promise: you will tell us if it gets that bad again? So you promised, although you knew it was a lie.

Because there is no help. And you have no more energy to cry.


* Please note: I have absolutely nothing against the NHS. I have no political agenda and am not interested in doctor, nurse or GP-bashing. It’s just that the mental health services available to people like me, in the area where I live, are utterly and incomprehensibly shite.

Please also be assured: I’m not currently suicidal – although as you’ve probably guessed, I’ve been there recently. But if you were going to ask, thanks for caring.