I haven’t posted in a while. I can think of a couple of reasons why. I was extra busy for a few weeks of July and the start of August, helping my wife out after she had a minor operation. Then, I was just starting to write an update here last week when I got a phone call from the local hospital asking me to come in much earlier than expected for another procedure, so we’ve had a right summer of it.
My operation was a laparoscopy for the purpose of diagnosing endometriosis. The surgeon didn’t seem confident that he would find anything (I always wonder how much doctors are influenced by my mental health history when assessing the likelihood that I am genuinely unwell), but he did, and he lasered the obvious bits out. I’m now over the worst of the pain, and waiting to see what my rather battered reproductive system throws at me next month. For the last few years I’ve spent at least half of every month dreading the start of my period, since it usually involves much more pain than most people seem to report, and sometimes – unpredictably – leaves me screaming in agony. I’ve collapsed in the toilets at college, in coffee shops, on holiday while staying with friends, in supermarkets, all sorts. I’ve looked for patterns, but all I’ve been able to work out is that if my IBS is really bad, the pain might be worse than usual (although given what the surgeon found it seems that cause and effect might be the other way around there – if the endo is being more inflammatory than usual, it will negatively affect my IBS), and if I drink any alcohol in the week before my period I *will* be in the worst sort of pain. I’m glad to have an answer, especially one that means I really was in more pain than most, not just being a delicate little flower. On the other hand, the results also have consequences for the way my wife and I plan to have children, for my future health, and I have to think through some treatment options as well, because it will come back.
I think I’ve also been quiet because I was so upset about the CMHT assessment I wrote about last time. I did write about it a bit last time, but my wife pointed out that I had been quite vague about what it was that had upset me. The way the psychiatrist treated me made me feel really ashamed. On the face of it what he actually said wasn’t surprising. He suggested I met partial criteria for various personality disorders (particularly borderline and avoidant), which is a fairly logical thing for a psychiatrist to say when faced with a self harming adult with a history of abuse, a morbid fear of social situations and depression that mainly presents as an overwhelming feeling of numbness. That in itself might have been hard for me to hear, because I’ve been taught throughout my whole time in contact with the mental health services that I must do everything I can to avoid being labelled with a PD, but I could have seen his point if what he said seemed a fair assessment of me and my current problems. However, he was determined to convince me, specifically, that I am emotionally unstable, based on the self harm, and I disagree with that. I’m not at all an impulsive person – if anything I could do with being more impulsive, I’m far too risk averse – and my experience of self harm is that the urge to do it builds slowly, over weeks, sometimes even months, usually tipping over into action in nasty ‘perfect storm’ situations when literally everything is going wrong and I finally crack. The problem isn’t my response to that last thing to go wrong though, because in other circumstances I can cope with isolated stressful events. The problem is the ongoing (annoyingly stable) low mood and high anxiety that steals all my resilience from me, and that’s what I wanted help with. The self harm was far more habitual when I was a teenager – now it’s just something that happens when things are at their absolute worst, and although I need to keep an eye on where I am in terms of urges to do it, on a daily basis it’s not really The Problem.
When I tried to explain this to the psychiatrist he shouted over me, came out with the comments I mentioned last time about being in denial/hiding behind my studies, and ended the appointment. Three weeks later I got a letter saying that the CMHT refused to offer any treatment other than this one, ten week DBT skills group, the contents of which I’ve covered five or six times before in my life in groups that utilise the exact same DBT modules. Worse than that, they had spoken to the primary care mental health services and other secondary care therapy services, getting them to agree they would not accept a referral for me from anyone else as this group was the only appropriate option. They’d even written to my GP, telling her that everyone was in agreement that this was what I should do, and that I should be encouraged to re-engage with the psychotherapy service for this group. Luckily, my GP didn’t agree (best GP ever, it’s so hard to find one that’s really good with mental health), and supported me in sending a letter of complaint. I pointed out that lack of skills wasn’t the problem, what I was looking for was help to work on the effects of the abuse, and that the other assessment I had at the psychotherapy service that I wrote about last time, in which I was terrified of the therapist, was hardly enough evidence to determine whether I had certain ‘stable, pervasive and inflexible’ personality traits. I felt hugely relieved that my GP backed me up in saying that none of this really added up for her, and that I was right to complain. I’m still waiting to hear back from the CMHT though, they’re clearly not in a hurry. I suppose there’s always PALS/ICAS but I don’t want a fight, I just wanted some support.
I’m not really sure how I feel about it all at the moment, I’ve been more focused on getting better from the laparoscopy. I’ve also been distracted by being a guinea pig for an LGBT therapy organisation, who needed people to test-study the modules of a new postgrad certificate they’re offering. That’s been really interesting, and has helped me feel a bit more confident about going back to university next month. My mood has been a bit better for the last month or so too, leading me to wonder what I’m doing contesting the CMHT’s decision, putting myself at risk of more crap from them. But then, what I wanted wasn’t just help to resolve the current period of low mood, I was also after help to properly deal with the effects of the abuse, so I could avert future crises. I’m probably on a train to nowhere with that one – mental health services are notorious for focusing overly on symptoms at the expense of causes. I also have the private therapist I’ve been seeing to help me with that. I could really do without having that additional financial pressure, but I was recently awarded some disability benefit that will cover her fees for now.
I was treated with such respect when I had my laparoscopy. I was terrified of the anaesthetic, and of being sick afterwards (I have a very long standing phobia of vomiting), but the staff were incredibly patient and did everything they could to make me comfortable, including using painkillers less associated with nausea and letting my wife stay with me throughout the whole day (their policy is to send family members away to wait for visiting times), apart from when I was actually in theatre. I was open about having mental health problems, and apart from the surgeon being slightly dismissive of my concerns around hormonal treatments, every other staff member treated me as if my anxiety was just as valid a problem as my endometriosis.
I’ve never felt that way about the mental health services. I don’t understand why they are so reluctant to treat people with dignity and empathy. It makes me want to cry to think of how ashamed and alone I’ve been made to feel by CAMHS/CMHT services at various points in the last decade and a half. It’s upsetting to realise how much mistreatment I’ve put up with, silently, convinced it was my fault and that if I would just try harder to get better the professionals would be nicer to me. It’s only with my wife’s support that I can recognise when treatment has fallen short, and decide to challenge it. I feel desperately sad for my friends who don’t have someone to back them up in situations like this.
There are lots of other things I could have posted about in the last few weeks when I’ve been either too busy or in too much pain post-op, hopefully it won’t be so long next time.