1. causes: awareness and conformity
I’m a little confused about exactly how aware of mental health I am supposed to be today. It’s no longer #mentalhealthawarenessweek (hashtag compulsory), but is it still #mentalhealthawarenessmonth? And I’ve missed this year’s #mentalhealthawarenessday, haven’t I? Whoops. I don’t mean to be cruel to anyone who’s found hope and community in these movements – I certainly have at different points in my life. But when you have a chronic and lifelong mental health condition, it is rather amusing to have apparently random days, weeks and months ordained as particularly suitable for ‘awareness’ of your everyday existence.
For all the snark, I have to start by saying that the spread of a basic level of #mentalhealth awareness must have benefitted people, and I’m happy for anyone who’s felt safer disclosing their condition or distress because of it. I would not want to take that away from anybody. But it also gets clearer every year, as austerity marches on and those who would rip apart our already fragile healthcare systems become more and more brazen, that awareness is not enough. My social networks are made up of many others with chronic mental illnesses, and it’s been a long time since I saw a #mentalhealthawareness post that wasn’t dripping in irony or bursting with rage.
With ‘awareness’ and ‘normalisation’ comes the idea that ‘everyone has mental health’. This is true, in the same way that everyone has body mass and everyone has a physical brain. And it’s certainly true that everyone experiences distress sometimes, that some experience of depression and anxiety is very common, and that we could all benefit from being kinder to each other in the face of emotional pain. But packaging ‘mental health’ for mass consumption in this way means we have to flatten its frightening edges and smooth over its snags: the ‘tricky’ mental illnesses, the ones that make us scary and irrational and unseemly and the ones we won’t get better from, can’t be allowed to feature too prominently. Not if we want people on board with the #awareness cause.
This sensation of being forcibly smoothed over, of being squashed into a box so that your shape makes sense to others, is not just something #awareness campaigns do. It’s built into the healthcare system itself. When you present to your GP with a mental health problem, it is very likely that the next step will be a referral for cognitive behavioural therapy, the NHS’s preferred treatment for almost every mental health condition there is. A brief explanation of CBT if you’ve never had it: the basic premise of the therapy is to correct ‘thinking distortions’ – incorrect or unhelpful ways of seeing the world – and reduce ‘maladaptive behaviours’ you may be using to deal with those incorrect thoughts. The idea is that the wrong-thinking and the wrong-responding reinforce each other, but by mapping out the processes and coming up with alternative thoughts and behaviours, you can lay down new routes and escape the cycle.
2. triggers: CBT and me
I first had CBT seven years ago, when I was having panic attacks during my final year of university. Every time I picked up a book to study from, I started hyperventilating and crying uncontrollably. I went to my university’s counselling service, and had 6 sessions of CBT. We identified that I was terrified of doing my work imperfectly and not getting the best possible grade. We discussed the idea that this was, in fact, not a realistic expectation to have of myself, and that not getting the best possible grade would in fact not be life-ending. We worked out new ways to think about my work, about doing “well enough” but not perfectly, and new ways I could respond when I started to have those feelings. It worked – in the sense that I was able to do my work again when it had finished. Or I was for a while. A few weeks after my CBT finished, I started getting blurred vision attacks whenever I tried to read. Months later, after endless hospital referrals and eye tests, I would find out that the blurred vision was caused by anxiety. At the time, I didn’t make the connection, but looking back, it’s obvious – the CBT might have fixed my ‘cognitive distortions’, but my body wasn’t convinced.
Two years later, I was back in crisis, much worse this time. My depression, previously nicely compartmentalised and undiagnosed, had climbed out of its box and taken up sprawling residence in my life. Once again I went back to CBT, on the NHS this time. I had a kind, responsive, empathetic therapist. I credit him with lifting me out of a dangerous place. But he could only give me 10 sessions, and he had to use CBT. When I struggled with it, pushed into traps of self-blame by CBT’s behavioural adaptation structure, he was understanding. He would distance himself from the therapy, saying “Well CBT’s answer to this would be…”, implying that that was not his own. By the end of the therapy I was presenting with much better thinking patterns, I was able to display much better coping behaviours. Once again, I thought it had ‘worked’.
Spoiler: it had not worked. The following year, I was back in crisis again – you’ll notice the time intervals are shortening here – and the corrected thinking patterns weren’t working. Once again, my body had decided to respond for me. I was having horrible sensations in my body, repeated intrusive thoughts of horrible violence I’d never experienced in real life. But I couldn’t go back to lovely Mo the therapist, because I’d already maxed out my entitlement. After a lot of wrangling I finally got a referral to the next tier of psychological care, and started 16 sessions (16! a luxury!) with another therapist. Of course, I got there and out came the CBT worksheets.
This time, my creeping misgivings about CBT were much nearer the surface. I’d had this therapy, twice, and it hadn’t fixed me. Despite its insistence on being a comprehensive worldview, it didn’t seem to cover everything in my world. I was very good at presenting the ‘right’ answer, I knew the answers before the questions even came, but it wasn’t helping me get better. I went along with it for a few sessions, but then in one session I couldn’t any more. Feeling blamed and cornered for my own illness, I did everything I’d always fought against doing in front of a therapist: I cried loudly and raucously, I said things that weren’t well-considered or insightful or correct. I responded maladaptively. And thank goodness, my new therapist (with the leeway that comes from 16 sessions) was able to change course. She did some research and we did the rest of the sessions using CFT – compassion-focused therapy. This was much closer to what I needed – focused on embodiment, with no centre of blame and no right or wrong answer. It helped. It didn’t make me better, because I will always have mental health conditions, but it set me on a course to cope with them. It got me through my training year, so I’m now doing paid work and am able to pay for private therapy. It’s safe to say that we’re not doing CBT.
3. maladaptive responses
This last experience of NHS therapy was in 2017, so I had thought that CBT was safely gone from my life. I knew it didn’t work for me, I wasn’t going to try it again, and that was that. But I didn’t reckon on just how beloved it is in all branches of the NHS, not just mental health services. When I had a traumatic brain injury this January, I didn’t expect CBT would have anything to do with it, but I was wrong. My occupational therapist, assigned to help me manage my fatigue and rehabilitation, pulled out a “fatigue formulation” on her first visit. My heart sank, but I was very tired and sick. I felt too tired and sick to push back against it, knowing that in a CBT model, refusing it would count as a maladaptive behaviour. I thought maybe this time it would be different, and I’d be able to cope. In fact, it was the worst encounter yet.
At the top of the fatigue formulation was a box that said ’cause’. The OT began to write in it.
“So, what causes your fatigue?”
[pause] “Er… the brain injury?”
“Right, exactly! And is there anything else?”
I started to feel it then, the slippage between what I thought I needed and what CBT expected of me. The OT was there to help me with fatigue resulting from brain injury. The only cause that was important was brain injury. And yet here I was having to answer this question, presumably designed to remind me that fatigue happened to everyone, that it was normal, that there was no need to be overly focused on brain injury.
After the cause, the next box to fill in was ‘triggers’. At this point in my recovery I could barely move around the house, I would plan my trips to the bathroom so that they coincided with fetching something I needed from upstairs so as to save energy. So the ‘trigger’ was simply doing stuff, any stuff. But I knew CBT did not want that. It wanted specific ‘behaviours’ that I could identify. I named walking and various household tasks. After the ‘triggers’ box there was a fork in the pathway – one side led to ‘helpful responses’, the other led to ‘unhelpful’. I filled ‘helpful responses’ with various things I’d tried, although I’d rather been hoping that would be some of the work the OT could do for me (again, that slippage – CBT pushing that all the ways to help already lie within me). Then there were unhelpful responses. I listed a few things that I knew didn’t help. And then the OT added “and avoiding going out, do you think that might be an unhelpful response?”
It felt like a punch, all my rising fears about how bad CBT could get coming true. I steeled myself. “No, I don’t think it’s an unhelpful response. I think it’s a rational response to the fact that going outside leaves me horribly sick for several days afterwards.” She said nothing. I justified myself further. “And when I’ve been out, I’ve lost my balance and my ability to speak, so I’m worried about my safety.” When I said worried, she began to talk about controlling my anxiety. I started up again, saying that while it was true I was anxious, I was anxious about falling over in the road or getting stuck on a bus going the wrong way while unable to talk, and if I could get help with those things then that would sort out the anxiety, not the other way around. She didn’t write it in the box, but I could tell she wasn’t convinced. She told me she thought I should be going out every day. I used my last bit of courage and energy to say I felt that would be impossible, and negotiated down to every other day. By this time I was too tired to ask what I really needed to know, which was how to go out safely and sustainably.
At my next appointment, three weeks later, I had dutifully been on an outing every other day. It had made me very ill. I had recorded exactly how ill on my fatigue diary, completed at the OT’s instruction, but to make the patterns easier to see I had diligently imported the diary into a spreadsheet, which I had colour coded. I was able to show that when I went out, I spent the next two days very ill, that I was having no quality time at home, that going out once every two days wasn’t working and that we needed to change the approach. I knew that asking to change the approach would meet pushback, but I had numbers, I had data. I had done exactly what I was asked and more. I was doing ‘helpful responses’.
When I showed her the spreadsheet, though, I felt that friction I’d felt while we were making the ‘fatigue formulation’. “I’m surprised it’s taking you this long to recover between trips out”, she said. I said that I was too, and that it was causing me a lot of difficulty. “Sometimes, when we’re very focused on symptoms, it can make them worse…” she began. And I broke. Like each time before when CBT had tried to ‘fix’ me, my body rebelled. I couldn’t speak for several minutes. I cried embarrassingly loudly. I started hurting myself compulsively right there in front of her, not for attention or pity but because it truly felt like the only way to get relief (I don’t think she noticed, luckily). I went from ultra-helpful to ultra-maladaptive. I didn’t do this consciously. I am the type of person who won’t go back into a shop if I’ve been given the wrong change, because I don’t want to make a ‘fuss’ even if I clearly have the right to. But a part of me couldn’t take any more.
4. helpful responses
Between my total breakdown and my partner’s assertive advocacy on my behalf, we were able to convince the occupational therapist that a change in approach was needed. That a focus on my behaviours was not going to work, and that as far as behaviours went I was doing every possible ‘helpful’ thing and my body was still not responding in a ‘helpful’ way. She asked me in more detail about what I was experiencing when I went out, and afterwards. Based on that we made some progress, identified some precise problems I was having to do with sensory overload, and agreed on an approach based on sensory exposure. In other words, an approach focused on helping my body to cope, rather than directing it from above and being surprised when it didn’t co-operate.
Since that appointment where I broke down, I have made a lot of progress in my fatigue recovery. The sensory exposure worked much better, and I began to make progress quickly. To the OT’s credit, the CBT-based fatigue formulations have totally disappeared. She understands not to use CBT with me. The problem is what I had to go through to get there. Breaking down so dramatically in front of a medical professional is something approaching my worst nightmare, so I spent the 2 days after the appointment and the 2 days preceding the next one with highly elevated depression symptoms. It should not be the case that the only way to stop a professional using CBT on you is to comply until you break.
Unfortunately, compliance is built into the very fabric of CBT. Because it claims to be able to map an entire worldview, encompassing everything from your deepest traumas to your everyday decisions, any part of your experience which doesn’t align properly with it can be classified as a ‘maladaptive response’. Indeed, anything which conflicts with the agenda of whoever is delivering the CBT could potentially be classified as maladaptive. Avoiding work? Maladaptive. Getting angry with injustice? Maladaptive. Pissed off with CBT? Maladaptive. Compliance? Helpful.
I don’t want CBT to be outlawed, and I don’t want people who are benefiting from it to stop. But, coming back to the beginning, I want ‘awareness’ of mental health to extend to those of us who don’t respond to the standard-issue treatments. I want more ‘awareness’ of mental health within the mental health system, and the wider NHS as a whole – not the idea that ‘everyone has mental health’, but ‘every mental health problem is different’. I don’t want awareness of mental health conditions to be conditional on everyone’s mental health looking exactly the same. And I don’t want pre-packaged therapies to be used without scrutiny.
CBT claims it can draw a clean line between thoughts and behaviours, between internal and external pressures, between conscious decisions and automatic physical reflexes. My experience is that almost everything I do fits somewhere between those, but this is too difficult and awkward for CBT, this is unnecessarily complicating things, this is ‘ruminating’ (one of the Thinking Distortions). Hoping that this one blog post might change people’s minds – that’s clearly delusional. Raging against a system I can’t change – I’m focusing on the negative. And perhaps most importantly, focusing on the system is blaming other people for my problems, when what CBT insists on most strongly is the distinction between the outside, which I mostly can’t change, and my own infinitely reprogrammable and improvable self. Refusing to reprogram, or insisting that we need to collectively restructure as a society before I could ever do that effectively, is the most maladaptive (and vital) response there is.