You Wait 15 months for One Diagnosis and then Three and a Half Come Along at Once.

Yesterday, my boyfriend and I went to see my new psychiatrist after not being seen by one since September because mine left and I never got put onto anyone else’s books. We were told we were attending to finally discuss diagnosis and I went hoping that would happen and I’d finally get a straight answer about treatment. Luckily, this psychiatrist is very thorough and seems to actually care. I met him once when I was 18 and liked him then as he was honest enough to tell me that because I’ve tried the main effective medications for my conditions with very negative effects to my health, I have medication-resistant depression and there was little to no point in trying those types of meds again in the future (sadly this information didn’t get back to my GP so when I originally became anxious I had to try taking these types of meds again before she’d try me on any new groups). The appointment was incredibly challenging. As usual, we were seen late and it turned out that slot had been triple-booked (I despair at the organisational skills of these places sometimes). I spent the entire assessment on the edge of a panic attack and cried twice because it was so overwhelming despite having taken diazepam in order to even get out of my flat to attend. I managed to get my points across though and have a tentative set of diagnoses that will be confirmed by letter within a fortnight. As a psychology graduate, I already had a fair idea that I’d be diagnosed with Generalised Anxiety Disorder as I fit all of the diagnostic criteria and have just about every symptom listed in the DSM (Diagnostic and Statistical Manual – used for diagnosing psychiatric conditions). What I wasn’t expecting was to be diagnosed with Social Anxiety and Panic as well. I always thought Social Anxiety was extreme shyness and an inability to be around people or to socialise. It turns out, it’s not that simple and that actually I fit very neatly into that box thanks to my fear of judgement from others and excessive worry about failing to meet others’ expectations or letting them down in some way (more posts in the future about this I’m sure).

I also got a big shock when personality disorders were mentioned. I have, at times, wondered if I had a personality disorder because many people with as many stress-related conditions as I’m racking up do have one. I’ve looked at the diagnostic criteria and got friends from my degree course to look as well and none of us think I fit the criteria so I really started to panic when the psychiatrist started to mention it because sadly, a diagnosis of a personality disorder leads to a great deal of stigmatisation, particularly within the medical community. Having worked with 10’s if not 100’s of patients with them, I’ve heard countless stories from them saying their doctors simply don’t believe them when they state that their conditions have worsened, they put all symptoms down to the personality disorder instead of looking at whether they have a second, third, or fourth diagnosis that needs to be made and they’re often labelled as manipulative hypochondriacs. Luckily, my psychiatrist agreed that these diagnoses of personality disorders are often very unhelpful and that in my case this would be true and I don’t fit into the criteria to be diagnosed with one because essentially I’m not severe enough. I was very relieved about this. He said, instead, that I can be described as having Adult Sequelae (seemingly not a diagnosis but a description hence the half in the title of this post). I’ve never heard of this at work or at Uni and when googling it, there is very little information, particularly for lay-people, just journal articles investigating links into drug addiction and alcohol abuse. However, how the psychiatrist explained it and what I’ve gleaned from the few studies that described it, is that issues from a difficult childhood or a pre-existing condition cause a second (or more) condition to develop as a result of the first. Because I had issues growing up, my ability to deal with stress has not developed and has left me very vulnerable to any future stress or adversity. I then develop physical or psychological conditions because of this lack of ability to cope and when I then learn to manage each condition but still not the underlying stress, I then develop a new symptom or condition each time I’m under severe stress or pressure again. It’s essentially like turning on a garden hose that has a hole in it. The water is the stress and the hole is a symptom/condition. I keep patching up the holes but then the hose bursts somewhere else (a new symptom/condition). I never manage to learn to turn off the water or re-route it somewhere else so I spend my life patching up the holes and learning to manage new symptoms and conditions without ever learning how to deal with stress or the issues from my childhood. This isn’t as severe as a personality disorder because seemingly, all of the other aspects of my personality are fully developed but my ability to deal with the negative events of my childhood and negative events that happen in my life today is still not formed. The psychiatrist has explained that I need to deal with the current issues of the anxiety disorders so I can get back to functioning and then work on learning how to deal with stress generally and combat the problems I’ve had since childhood. This means I’m going to be having a lot more therapy over the next few years and he did point out that while there is no reason to suggest I won’t improve, recovery is a much harder battle and one I’ve not yet won with any of my conditions as all those I’ve been diagnosed with still affect me to varying degrees despite my management of them.

Leading on from all of that, I’ve also finally had my treatment plan outlined! I’m to be allocated a support worker who will visit me at home and work on practical things to get me going out more. If/when that improves I will then be enrolled onto a group CBT programme at the local day hospital which I will attend with the support worker. After that, I may well be enrolled to attend the local recovery college where I will be taught about the conditions I have, how they work and what can be done to manage them. I’m not sure how much use that part will be given that I already have a psychology degree where I extensively studied these conditions and have not only worked for a total of 11 months with patients with these conditions but have also heavily researched them since becoming unwell myself but if I get well enough to attend then I’m certainly willing to give it a go to see what it’s all about and whether there’s anything new and useful I can pick up. After all of that, my level of functioning is meant to be a lot higher and I will then be assessed by a psychotherapist who will advise me about what long-term therapy I need to have and I’ll hopefully be referred to a highly skilled therapist from there for treatment which is likely to need to last 12-18 months.

So, I now have three and a half shiny new diagnoses and I’m still in shock about it all. I was so worried that I was going to be fobbed off again without knowing what’s wrong with me and what’s caused my life to turn upside down for the last 15 months. I’m pleased I now know officially what’s wrong with me, that I’m being offered treatment and now have a plan of what’s going to be offered and what we’re trying to tackle first, but naturally, now the worry is setting in about the pressure I’m likely to be under to improve, to constantly be getting better without being able to get used to any slight increases in functioning (there will be a lot of these in between being virtually housebound now and having a normal life where I can work and socialise). I’m worried about how I’m going to cope with a support worker when that’s the job role I was in when I became too ill to work, whether I’m going to get on with them, whether my treatment will be done at my pace or a pace set for me that I don’t get to have input into and a whole heap of other worries. The nature of Generalised Anxiety Disorder is that you worry about everything, particularly the unknown, so this is all very scary. I now have some labels that roughly describe what’s wrong with me and what I’m going through but I currently have no idea how long it may take to improve my functioning or even if the treatment plan will help. It sounds like the psychiatrist expects it to help but then he kept saying “if” so I don’t actually know what the likelihood is or what time-scale we’re looking at. I’m trying to just stay calm and take each step as it comes but such is the nature of the beast that I’m fighting that this is nigh on impossible for me to do and I’m already worrying about what if all of that doesn’t work and I’m left housebound still with another treatment option crossed off the list as not having worked. I’ll certainly be giving it my best shot and anyone that knows me offline will know how motivated and determined I am when I set my mind to something but the worries are still ever present. At least I know what conditions it is I’m fighting and have an action plan to try. Beyond that I’m just having to hope, and wait and see! Updates will follow as and when there are any. I’m still shocked and stunned that I’ve waited 15 months for one diagnosis and then three and a half came all at once.

Physical Illness vs. Mental Illness – Why You Should be Outraged

Today I’m feeling anxious, I have been feeling increasingly so for the last couple of weeks because tomorrow I have an assessment with a psychologist. I was originally meant to have the assessment in December but wasn’t well enough to attend and moved it to the end of January hoping that I’d have improved by then. Sadly, it got cancelled with 3 days’ notice by the psychologist because she was striking that day. It got postponed again until after I’d finished withdrawing from my medication and hopefully improved. It’s now tomorrow. In some ways I have improved – I cope better when I have to travel in cars, I can go to the shops a little more often and stay out a little bit longer before the panic sets in, occasionally I even go out and don’t feel panicky at all. However, I feel incredibly anxious about tomorrow.

I’ve been fighting for this assessment since September and was originally deemed “unsuitable” but was never told why. I fought and explained why I should be assessed for therapy and stated that as medication clearly doesn’t work, psychological therapy was my only hope other than spontaneous recovery which we can hardly rely on happening. Eventually my psychiatrist gave in, seemingly because he could no longer justify saying no and I was sent an appointment.

They keep refusing to do my assessments by phone even though I’ve already missed one face-to-face appointment because I got so anxious that I couldn’t move and they keep telling me to “just try” and “keep pushing yourself”. I push myself every day. I have almost no support from the health services now and was really unwell for months due to withdrawal from my medication which wasn’t monitored because I still don’t have a new psychiatrist. I’ve now not been seen by a doctor since the 3^rd of September and am still yet to be allocated one – it’s been 7 months.

When you’re suspected of being diabetic doctors don’t just make you eat sugar in front of them and then pump you full of insulin when it’s clear that your body isn’t processing it and is rapidly killing itself. Why then must I keep “pushing myself” to go to appointments so that they can see “just how anxious I am”. Why am I essentially being tested? Most of what I say and do currently seems to be skewed by doctors and psychologists who just use it in whatever way they like to back up their own point. I’ve attended 3 appointments so I was well enough to get to those, why not the latest appointment? I explain that I’m so anxious about these appointments that I stop being able to sleep for a week beforehand and my IBS flares up. These appointments are making me more ill but I’m expected to attend them in order to get treatment. I have to go to assessment after assessment with healthcare professionals with different job roles and titles and so far all I’ve been offered is Group CBT sessions. I regularly go weeks at a time without being able to set foot outside my front door so how is it feasible to expect me to do this? Asking me to “just go outside” is like asking someone with a broken leg to walk on it with no plaster cast. They can want it as much as they like but as soon as they try to put weight on it the pain will be unimaginable and their leg will buckle potentially causing more damage. Wanting your bones to fuse together doesn’t mean that it happens and it’s exactly the same with my anxiety. I hope, wish and even pray every day that I will be able to go out and do all of the normal things that I took for granted but that doesn’t make me any more able to do them than walking on a broken leg.

Patients having a lump investigated are told what the possible outcomes and diagnoses may be and in time are told what treatments may be available to them. They are given a diagnosis as quickly as possible and then told about treatments, prognosis and available support. They are not kept in the dark about these things and are allowed to make decisions about what they feel would help them best and how they want to proceed. I’m afforded none of these luxuries as a mental health patient. Over a year in I’m still yet to be diagnosed, I’m still having to go to assessments and have still not received any psychological treatment. I’ve taken myself off the medication that was making me worse because I have no doctor to discuss it with or to advise my withdrawal so I did it alone. I have been in and out of the mental health system since I was 16, I have a psychology degree and until a year ago I worked in a psychiatric inpatient unit. I know my stuff when it comes to what therapies are available and whether or not they’re likely to help me. I’ve had so much CBT that I could almost certainly deliver low-level therapy with no need for further qualifications and while it’s a great therapy, it hasn’t worked for me and there’s no reason to think that would be any different for this anxiety disorder.

In 2011 I received Cognitive Analytic Therapy which really helped me at the time and is the therapy that I believe in most to be able to treat my current difficulties. I have been asking my psychiatrist since September to refer me for CAT and have been categorically told that it IS offered by my local NHS Trust and within my area so I fought for it for 5 months. I’ve asked more than one health professional on numerous occasions whether it’s offered here and whether the therapy assessments I’m going to are assessing me for CAT or just CBT and have always been told that they are. That was until January when I phoned the day hospital and the person I spoke to immediately said that the Trust DO NOT offer CAT. I was shocked at this and nearly burst into tears. I told her that both my psychiatrist and psychologist had assured me that it was and that I was being assessed for it so she said she’d check. The psychologist then called and finally admitted that CAT is offered by the Trust but that there are no NHS funded therapists in our area and due to my condition preventing me from travelling, I would not be being assessed for it.

I’m now in a very difficult position where I’ve been lied to by the very people that I’m meant to trust. I have to open up to these people about my deepest darkest fears and tell them about all aspects of my personal life. I’m meant to trust in them to tell me the truth and to work for my best interests and to advocate for me when discussing my treatment in meetings. But they’ve lied. They’ve lied over and over again, when I’ve asked them direct questions about whether or not I’m being assessed for this therapy. It feels like I’m being conned. How am I meant to persuade myself to go to an assessment that I’m terrified of attending when it looks increasingly likely that I’m just going to be offered Group CBT or sent back to my GP. I keep asking what provisions there are for people who are housebound and I’m still yet to get an answer. I have explicitly stated that I do not want to be discharged back to my GP, the same GP who put me on medication that I should never have been given in the first place due to previous bad reactions to it and who told me to “just stick with it” and more worryingly to “try harder” and “think more positively” while I deteriorated thanks to the horrendous side effects. If I can’t attend tomorrow though I may well be discharged back to their “care” meaning I won’t get any treatment.

I know that I’m one of the unlucky ones for whom medication is not the answer, or even part of the answer. I know that I’m a nightmare patient because my conditions are treatment-resistant and complex but I wish they’d been straight with me and not lied. If CAT isn’t offered in my area and I’m not well enough to travel out of area for it then that’s fine. I don’t like it but it’s not unreasonable and I understand that particularly in this economic climate there are limitations on healthcare provision. I’ve directly asked over and over again and been assured that I was being assessed for it. I’m left wondering what would have happened if I’d been well enough to attend the original assessment? Would I have been told I was “unsuitable” for CAT despite being suitable for it when I was assessed in 2011 by a different NHS Trust? Would they have just tried to palm me off with Group CBT and then said that I was “refusing treatment” when I declined due to not being well enough to attend? Would they have ‘fessed up and said that actually they’d got me there under false pretences and that CAT isn’t offered? I’ll never know.

I am not alone in being treated in a sneaky, underhanded way. Countless patients with mental health problems are treated like this every day. It simply wouldn’t be allowed if I had a physical condition. I wouldn’t get put on medication without a diagnosis. I wouldn’t have to prove myself, my tests results would speak for themselves. You may be thinking that you can’t test for mental illness and biologically that’s currently true. I can’t have a blood test and be diagnosed with an anxiety disorder but there are countless psychometric tests that measure anxiety levels, depression scores and every other psychological condition under the sun and my score on the anxiety tests is through the roof. There is no mistaking or denying that I’m severely affected and that my quality of life is hugely diminished by this condition and the test results show that. And yet, I’m still expected to prove it by attending the appointments and for some reason, unknown to me, not being able to attend an appointment because I’m so anxious that I’m not able to move, doesn’t prove that I’m even more ill than they thought and therefore in need of urgent treatment. No, my inability to attend appointments just seems to elicit threats of being discharged back to my GP and receiving comments about not trying hard enough or putting in enough effort. This would be a disgrace if I were physically ill but it’s widely accepted when mentally ill – You Should be Outraged!

N.B I’ll post soon about whether I manage to attend tomorrow and what the outcome is.