As a runner who has mental health issues it was, of course, a foregone conclusion that I would watch a television programme entitled “Mind over Marathon” – an account of how a group of people who have a variety of mental health conditions train to run the London Marathon in order to help improve their mental health. The programme is presented by a good and sensitive presenter with a team of “experts” to help, and also features a couple of young princes who are advocates for mental health awareness.
As a blogger who is currently trying to use the written word to explore my feelings about various things it was, of course, a foregone conclusion that my brain would be fizzing with thoughts that needed translating and my fingers would be itching to get to the keyboard in order to do that work. How successful I will be in trying to impart some of those thoughts, who knows, but I’ll give it a try.
But first, two really really big disclaimers, or “health warnings” or whatever you want to call them, about what I want to write later on.
ONE
I am in absolutely no doubt at all that it is massively massively good thing to talk about mental health. I think it’s great that young royals are getting involved in the whole business and raising awareness and making mental health part of the discourse of current life. Anything that can be done to “normalise” words such as “mental” (one of the participants on the television programme mentioned how uncomfortable he was using the word because of the derogatory connotations it sometimes has) and, indeed, “autistic” (which I’ve heard people say mustn’t be used because it’s an “insult” – er, no, if people are using it as an insult then they are misusing the word) is a good thing as far as I’m concerned. To take words such as “mental” and “autistic” and treat them in some ridiculous Voldemortesque way simply continues to ignore issues that need addressing in many people’s lives.
I have seen many posts online indicating that “It’s all very well for wealthy figureheads to talk about mental health, but what about the ordinary folk?” I have heard those messages and, to an extent, agree, and in no way do I believe that “Prince Harry says talk about mental health” means that the job is done and that “awareness has been raised” and we can all now comfortably go back to ignoring the real, everyday, practical problems that people are facing. BUT, out of my bubble of friends and online pages and groups, most of whom are pretty savvy about mental health issues (“mental” is a commonly used word in my life and I’ve been open about mental health issues for decades), there are still those out in the wider world who are not taking these things on board (some of the comments on mainstream media facebook pages alone are enough to indicate this is the case), and if a high-profile person talking openly helps, then yes yes yes, all to the good. Yes, a young privileged man who has suffered exogenous mental health issues as a result of going through the process of grieving the death of his mother in the public eye is not one with which most of us can relate, but it is valid personal experience and he has used the advantage of his position in the public eye to open the discourse.
TWO
I am also in absolutely no doubt that exercise has a huge and important role to play where mental (and indeed physical) health is concerned. I absolutely don’t need to be convinced about the wonder of running – I’m an ultrarunner and in the ultrarunning community it’s well-known that people have overcome depression, addiction, and all manner of other difficulties through the power of running. I don’t need to be convinced to enter a marathon – I do that just because I like doing it. I enter the ballot to run London every year but am yet to be successful. Running is awesome and cool and fabulous. I’m currently frustrated because my own difficulties currently mean I’m struggling to run and I’m really really keen to get back to it and gently pushing myself in that direction whenever I have the energy. I do not need anyone to tell me about the excellence of running – the sheer wonder that comes from being out on the trails alone in the middle of the night, with the moths fluttering in my head torch, is more than ample to persuade me.
I am, however, aware that running per se (and particularly yomping around the countryside alone at night) might not suit everybody and that other forms of exercise are available. Some people prefer to have a team around them, some have physical impairments that mean swimming is gentler on joints, and there are many barriers to some people exercising at all – it’s by no means easy, and it’s no panacea, rather, part of a toolkit that can really help improve mental health in some circumstances. I am also aware of the dangers of exercise addiction and its link to eating disorders and that not every journey to run a marathon ends in a triumphant finish line smile – for some, the stress of training or the frustration of injury can make mental health worse, not better. But, with these provisos, and other similar ones, I absolutely see how wonderful exercise can be, and it can play a really important part in achieving and maintaining good mental health.
***
Having said all of the above, what do I now want to add? What actually prompted me to write this post? And how can I address the issues to which I have alluded above?
The moment that triggered it for me was the point in the programme where they were interviewing a young woman who was clearly struggling with coming to terms with a massively traumatic experience in her life several years ago. Her child died suddenly, and her husband, overcome by grief, killed himself shortly afterwards. And this young woman sat on the telly and recounted what support had been available to her at the time – or, more accurately, recounted that there had been NO support available to her at the time. Nothing.
I don’t know what has occurred with her in the intervening years, and neither do I have the energy to do a research project on it, but it strikes me as shocking that her issues are only really being dealt with FIVE YEARS LATER! Five years is a very long time to be in mental anguish before you are eventually picked up by a TV programme. And, even now, it seems that in order to get the level of support that the TV people are providing, in terms of “experts” and so on, the woman has to run a bloody marathon – literally! (Please see disclaimer TWO above – and, of course, the marathon is the point of the programme).
And, watching the programme I was struck, not by the rigors of marathon training (that’s all familiar stuff to me – I went, as an obese fortysomething, from couch to marathon in seven months a couple of years back, and the training, exercises, foam rollering, so on are all part of the deal), but by the level of support that these people were given. Admittedly, the support came with a rather large side order of “we’re going to film this so you’ll be exposing your emotional vulnerability on national telly”, which I didn’t have to contend with, but neither did I have a cuddly TV presenter or an “expert” come and look after me when I was shaking because of the stress of leaving the flat before going out on training sessions – I had to do that bit on my own. The TV marathon training programme is therefore not looking at the effect of exercise alone on mental health, because it is providing these people with someone to talk to, someone who will listen to their issues (both the people on the show who can give feedback, and those of us sitting on our sofas at home), and that listening is really important.
I have been talking about mental health online for around a decade now. I’m pretty cool with it. I very quickly became totally public about being autistic. I talk about both mental health and autism. A LOT (probably too much, truth be told). When I have been in mental health crisis I have posted on my facebook wall and the overwhelming advice has been “seek help”, “go to see your doctor”, “get referred to a specialist”, and so on. So I have tried, on many occasions, to do just that. But it is a fight, and if you are already struggling, already finding life difficult, and already reluctant to ask for help because you feel, somehow, that it is your fault you are feeling this way (there’s an awful lot of guilt comes with many mental health conditions), then fighting through the system to get the help you need can be a seriously tough process. And if you have nobody who can advocate for you then it’s even worse. Persuading someone to listen to you can be very very difficult.
The problems I had trying to get an autism diagnosis in a psychological services department and my analysis of the situation are documented earlier on this blog (the only “treatment” available to me at that time was to “go to A&E” if I actually tried to kill myself). I was struck at the time by how little cohesion there was between the different services available and how there seems to be nobody available who can deal with all of my issues, as well as the fact that those with really low self esteem are seen in a building so dilapidated that the plants are growing through the wall! Even the superb autism service elsewhere that eventually diagnosed me as autistic, cannot, for example, suggest any medications that might help with the anxiety I get, and neither can they help me establish whether I also have comorbid ADHD (all the online tests and so on and research I’ve done suggest that I do), because that’s somebody else’s department (if I can ever find “somebody else” and can face the exhausting process of telling my life story, yet again, to another stranger).
So “seeking help” is not as easy as it might seem. In fact, for most of us, it’s really jolly difficult. I have heard tales of people who are totally broken being offered “telephone CBT” (when you’re vulnerable, you get rung up by a total stranger, who gives you your allotted time on the phone then hangs up, leaving you in a worse state), people who are unable to communicate with services they need because communication is only by post (not so good if you are frightened of opening the mail because of what it might say), and, people asking for help with fear of the telephone and who struggle to speak on the phone being given a leaflet and, yes, you’ve guessed it – told to call a telephone number!!!
Equally, “taking up exercise” is not as easy as it seems, especially when you’re mentally unwell. If you feel insecure and frightened walking down the street (many of us do) then you’re unlikely to find going out to walk or run very easy. Furthermore, if you want to swim, or join a gym, or get any sort of personal trainer, then it is expensive, even at reduced rate, and many mentally ill people are out of work and struggling financially – if you have to choose between paying your rent or joining a gym then you’d be pretty daft not to pay the rent. When I started running I was lucky – I had enough confidence to get out of the door and a husband who supported me all the way. I had enough money to get a pair of trainers and a sports bra to get started with (this wouldn’t always have been the case in my life), and I live in a place where many people run, and it isn’t a big deal. I also have serious hardcore willpower and a level of “persistence” that gobsmacks most people (possibly one of my autistic traits), but many do not. Though I know many people who are trying, some even apparently inspired by my own accounts of running and so on.
I fear I’ve raised more questions than answers here, and maybe that’s actually what’s needed. My experience in both the mental illness and autistic communities has been that so much of the support comes from within, from people also struggling. I am trying to work out what might have enabled me to continue in employment in order to help those might follow me and be able to maintain jobs where I couldn’t. I have developed strategies to support myself based on the writings of others whose blogs I read. There are groups and people everywhere trying to piece things together and help each other.
Equally, and, sometimes surprisingly, the running groups and fitness groups have also provided a source of support for me and, I observe, for others. Those who do not have the support of a TV programme have to look after each other, encourage each other, either to get out there for a run or whatever, to cope with the frustrations of injury, or to discuss the fates of toenails and so on. The online responses to people who are struggling with whatever aspect of their lives or training can sometimes be amazing.
However, online support can only go so far. And there is a danger that those of us in the mental health “world” exist in something of a bubble and that people outside of that world don’t realise just how tough it is to get help or to get out there and run a marathon when your mind is telling you to sit in your chair and wait to die or even to hasten the process by your own actions. What is really needed is concrete, joined-up support, and both mental health services and physical activities that are easy to access. That is a much much bigger ask, and I’m only one very ordinary person sitting alone typing into a computer, a person who is still struggling day to day, and trying to translate the thoughts whizzing round my head into comprehensible words, so I don’t really know what more I can do, other than keep talking and keep raising the issues.
And so I come to at least one conclusion, which is that programmes like “Mind over Marathon” and statements by young princes, are important. And they’re important because they raise issues that those of us who are just individuals with no resources and no power are unable to raise, because we cannot reach the people that TV programmes or princes can. They can persuade people who will never encounter somebody like me (for whom mental health is a normal part of daily discourse) to talk about their mental health issues, and they can encourage far more people to take up running or physical exercise than I ever will.
However, the worry with such high-profile campaigns is that people will feel that they have “done” mental illness. They’ve all watched the programme, they all know what it’s about, and, like with autism “awareness” there will be a general feeling of “yes yes, mental health, blah blah blah”, but mentally struggling people will still be showing up at their GP surgeries after weeks of angst about whether to attend the appointment because it’s all so scary, and will be given a telephone number, or a web address, or, at best, put on a waiting list that might be months, or even years, long. There are lots of small, quiet, voices out there, trying to talk about their mental health issues and begging for help.
There are also people like me, who are slightly noisier and more forthright and link to blog posts and so on and share mental illness stuff whenever we can, even though, sometimes, writing a post such as this one uses up all available energy for the day. Interestingly (and I’m not alone in this observation), when I share mental health stuff or posts from this blog (I know that this is, technically, an autism blog and that autism is not a mental illness etc etc) on my facebook wall, these days I get a small handful of “likes”, maybe 3 or 4 on average, if that. If I share a status about doing the laundry then I often get 30 or 40 responses! This suggests to me that people are ten times more interested in laundry than they are in autism or mental health issues!!! (Of course, it’s not quite as simple as that because facebook algorithms magnify posts that have already been liked and try to force people who share blog links to pay money for extra publicity and so on, but whatever the cause, the result is still the same).
On one level, it’s great to talk and to raise the profile of mental health issues, and it’s totally fabulous to run marathons if you can do it. If more people are encouraged to talk and run then that’s brilliant!
But on another level, there are many of us who are already talking about mental health issues (and in my case, now, also autistic issues), have been talking for years, and will continue to talk while we still have breath.
But is anybody listening?
Sometimes I am too tired
The anxiety
This afternoon I sat at the computer and tried to work on a couple of blog posts. I have a huge list of things I want to write about, things that are swirling round my head, things that need translating into coherent words so that you, gentle reader, will understand them.
You know those hanging sculptures?
It is bright
I have just been out for a walk.
Like a pendulum
So, eight weeks on from my diagnosis, I’m once again pausing to observe the passage of that time, and, understandably, reflecting on how life has progressed since I sat in the room at the end of a five-hour interview and testing session and was told that I clearly fulfilled the criteria for a diagnosis of autism spectrum disorder.
Sometimes,
Finally Knowing Me: An Autistic Life 