We're a 32 year old system from Devon. I'll mostly stick to what happened after I learned what a dissociative disorder is. Though they really should have noticed something sooner! I think like most people I went through several psychiatrists and counsellors, starting from childhood, before I even heard the word "dissociation", though unlike many we were never sectioned or anything like that. Recently, after starting therapy, I remembered we actually first learned about dissociation 10 years ago. I tried to get a friend to read a zine about it and they said "you definitely don't have that!", and it got forgotten.
I'd already been denied counselling by our local NHS service just a few months before (which is run by a private company who make more profits by refusing people... but that's another story!). I was "too complex" for their counselling service. But "not bad enough" for an appointment with a psychiatrist in their Community Mental Health Team. So I had to find a private counsellor to take me on. At first I had 2 sessions a week, until all my savings were gone after 3 months and I went down to 1
That was really painful. I needed all the support I could get at that time, and it broke me when I had to stop half of it. The only way I could handle it was to "close off" more of my feelings and shut down more emotionally. So I think that one thing has held healing back for a long time, right when I was beginning to open up and make progress for the first time in my life. None of my friends were helping in the way I had hoped and I felt completely alone (I think they tried, but they just didn't understand at all). Consistent support is important
At that time, I asked my GP to refer me to a specialist service for dissociation. My head felt like a complete, confused mess at that point and I needed to talk to someone who would say "yes, you have this'' or "no, you're just imagining that". Counsellors don't really do that here as they aren't qualified to diagnose. So I asked my GP and tried to explain some of my experiences of dissociation, though that is very difficult to do especially with someone you aren't sure whether to trust. He just didn't get it, he didn't know what dissociative disorders are, and told us dissociation is "just a symptom of other things, not a disorder in itself". He could see I needed more support and that something was wrong, though
Well, it took about a year of being messed about - told to speak to local psychiatrists, local psychiatrists confirm they said already that they won't help, I slowly build the confidence back up to bother the GP again, and so on. Eventually I manage to get them to refer me to a private psychiatrist via right to choose... though this psychiatry company mostly deals with ADHD.
So I go for a first appointment and explain everything and say to them "do you think I might have something like DID?". The psychiatrist says no. Why? Not because we don't meet any of the criteria! No, it was because DID isn't real and was invented by bad therapists who convince their clients that they have it. That's what he said. I actually have a recording of him saying that.
By this time we were used to medical professionals being ignorant and we knew how to handle this, so we filtered out all the emotions we had in reaction to this and just said to him politely "oh, that's reassuring. Could you explain to me the evidence for that, just to put my mind at rest?" He said he would send us a link to some research later. In the meantime he diagnosed us with ADHD (of course! Psychiatrists tend to think everything is their special interest, whatever that happens to be at the time). "But our symptoms seem very different to the other people we know with ADHD, are you sure?". He reassured us it was just some kind of super ADHD, and he had a similar patient before who he diagnosed the same (but what if THAT diagnosis was wrong too, doctor?)
Well, after about a month he finally gets back to us, and sends us a paper that of course we have already read. Not only that, but this was a famous paper that actually shows the opposite of what he said - that DID is real, and can be distinguished in brain scans from people who are just acting. He had read it to say what he wanted it to say, and completely missed what it actually said. I informed him of this right away, in a message as politely as I could. "You're right" he replied, and: "isn't science wonderful?". Then promptly retired.
Well, I had to have a new one assigned, so this time I did my research and asked to be sent to one I had checked out and made sure they already knew about dissociative disorders. That psychiatrist was lovely (there's a first time for everything!) and actually listened to us and asked all the right questions. For reasons I don't understand, this had to be spread across (maybe four?) hour-long sessions all weeks apart, over a couple of months, which was quite difficult. Still, it was good to actually talk to someone helpful finally.
When I first realised and got a therapist, that's kind of complicated. The moment of "oh crap, this is real actually" happened while seeing a trainee therapist with mind who had already told us she isn't experienced enough to do trauma counselling. I said yes that's fine I just want to talk about ADHD... then stuff came out that I didn't really expect
The actual time to get help after that was very quick as I knew by then private was the only option. So we searched for therapists on the BACP website, with experience in dissociation. You can actually put that into the filter! So after doing our own background check we picked one and asked for urgent help asap. It only took about a week after that for our first session!
The journey before any of that is too long to tell and probably not very interesting. I knew something was wrong, I knew I needed therapy and tried it but it felt like I could never work out what it was I actually needed to talk about.
I wasn't sure what we have, as some things matched with OSDD/DID and some didn't. I was hoping for a clear answer. But unfortunately, sometimes things just aren't clear no matter how you look at it. She said our dissociation was too much to be "just" DPDR. But not enough to be DID, and probably not even "Partial DID", though it might be that (this is the new ICD-11 category they were using in place of OSDD). So I was diagnosed with "unspecified dissociative disorder" in July 2022
I have mixed feelings about that. On the one hand, it does match exactly how I feel, that I don't quite fit into any box. I can understand her reasoning. On the other hand, my personality already feels "unspecified" enough already and even just that word was quite a lot to get my head around. It would have been more helpful to have something clearer. When the reality around you seems unclear, and your own identity feels unclear, it doesn't help so much when your diagnosis isn't clear either. And maybe with more time and actual support, it would have been? But equally, sometimes that's just how it is.
Overall though, once I had time to work through it, getting the diagnosis has been REALLY helpful. Therapy feels smoother now. I'm not as worried anymore that I might be faking to myself or imagining that things are worse than they are. I still get a bit of that sometimes but it's NOTHING compared to how it was before. I think all the times I was pushed back by doctors and psychiatrists before had really added to my sense that I couldn't be that bad and other people are much more deserving of help than me
The response from the doctors since my diagnosis has been underwhelming. Months later my GP admitted he hadn't even read the good psychiatrist's report, and even after he skimmed it, it was kind of clear that he didn't understand what it was about. I've not been offered any kind of help or therapy (not that I trust local services enough to submit to their help at this point anyway... but still). If it wasn't for my benefits, particularly PIP, I'd have nothing as I can't work. Thanks to that, I have enough to pay for my own counselling and I'm very lucky to have that. It's been almost two years of therapy now and progress is very slow. But it is keeping me stable and we are slowly healing and doing better, just very very slowly. Dissociative disorders take a lot of work, and it feels like most psychiatric services just can't be bothered with us. Most of us have trouble valuing ourselves, and the professionals seem to agree with that self-assessment.
I don't know how, but I think things aren't going to change in the NHS unless we go out and make them do it ourselves. I'm glad you are putting these stories and experiences together, that seems a good place to start.