In my ‘About’ section I say I have depression and complex post traumatic stress disorder. But this is a example of something that is both true and not true.
Truth and honesty are incredibly important to me. It’s a big part of why I write this so it might seem odd to call my diagnoses true/ not true.
True: I do have a diagnosis of depression.
Not true: I have a diagnosis of c-PTSD.
What’s that all about? Well, I’ll tell you.
Depression can be diagnosed by a GP. So my GP and the lady from IAPT (Improving Access to Psychological Therapies) both agreed that I have reactive depression. I don’t know how severely it’s graded though. Maybe quite severe as I have suicidal thoughts? Maybe mild as I am still in work. Who knows?! Either way it’s a proper thing: I have depression.
So what of the c-PTSD? Well that’s what my GP thinks it might be. However he isn’t qualified to make that diagnosis. Neither is my counsellor, despite having worked with PTSD patients. She is, however, giving me EMDR treatment for trauma. So, the reason I say I have c-PTSD is because the healthcare folks who see me appear to believe that to be the case. To get a diagnosis I have to see a psychologist but that feels like it will never happen because I keep ‘managing’. But why does it matter whether I’m diagnosed officially or not?
Because truth and honesty are very important to me. I said that already.
One of my big insecurities is that I have made this all up. I am not really ill. I’m attention seeking and utterly bonkers. I grew up knowing that I had to keep secrets and I kept them well but now it feels like everyone is just pretending that none of this ever happened. Or, if it did happen, it certainly wasn’t bad enough to cause this. It makes me really uncomfortable. I’m a scientist so I look for evidence but there is very little actual evidence. I have scars from cutting myself so that is evidence that I must have felt really bad. Yet, in my family, everyone seems fine with it. Conversely when I speak to my counsellor she is often quite horrified about some of the things that happened (mum in the living room with knives when I was 12 or mum screaming as she went through withdrawal as examples). It doesn’t make any sense to me. How can the counsellor be so horrified and everyone else so non-plussed. I don’t understand. It confuses me. I then come to the conclusion that my memories can’t be real. Or I’m exaggerating. Or I’m confused. Or something? Whichever it is I always come to the same conclusion: the problem must be me. I must have it wrong. That couldn’t have happened???
But it did.
In my quest for evidence and I found some from a reliable source: a childhood friend. She’s the only non-family person left in my life from those times. She didn’t know the half of went on. I couldn’t tell her. It was too sad to say and best “forgotten”. Anyway, I rang her “please tell me some things you remember about what happened to me growing up?” I pleaded. She obliged (thank you thank you thank you!!!!). Without prompting she told me things that I had doubted to be true e.g. the knives in the living room incident. The relief flooded over me! I’m not mad, or maybe I am, but not in a making it up way.
When I’d told the counsellor about the knives in the living room I’d guessed I must have been 14 or 15. And I had said “that can’t be true. Surely something like that never happened? Someone would have done something!”. But here it was: evidence. And, in fact, it had occurred much younger than my guess. It had happened and if that had happened then it’s quite likely that the other stuff happened too. I appear to have gone off point – why does diagnosis matter?
It’s not because I want a label although I actually think a label would be really helpful here! No, it’s because I want someone, a proper grown up with qualifications and authority to say “I believe you”. To say this was a real thing and that I am actually ill and that it’s ok if everyone else pretends like it never happened because I’m right. It did. The two facts are intrinsically linked: the abuse/neglect must have been bad enough to cause c-PTSD AND to the c-PTSD was caused by abuse/neglect. It must have happened and been ‘bad enough’. So if I can just get a diagnosis it gives me a bit more evidence. It gives me a little strength when I need to address me family. I’m not deluded – you are.
Honestly? I don’t think I’ll ever get a diagnosis. I’m just not ill enough. I’d probably have to make repeated suicide attempts to get anywhere near a psychologist and I’m not going to do that. For my children. I will not put them through that.
I guess the future holds uncertainty and doubt without diagnosis but if I ever get one I’ll let you know.
By chance I found my letter from the IAPT summing up my assessment: PHQ-9 score = 22. GAD-7 score = 17. I didn’t know what this mean so I looked it up. This is the meaning taken straight from the NHS IAPT Data Handbook (link below).
The PHQ-9 Scale (NHS) is used to find out if a patient has depression. A score of 10 merits a depression diagnosis. So I guess at 22 my depression is severe. Well, that answers that question.
0 – 4 None
5 – 9 Mild
10 – 14 Moderate
15 – 19 Moderately Severe
20 – 27 Severe
And what of the GAD-7? So that looks for anxiety using the following cut-off points:
0 – 4 None
5 – 10 Mild Anxiety
11 – 15 Moderate Anxiety
15 – 21 Severe anxiety
Right. So I have severe anxiety too? Why am I only just finding this out be googling and researching myself?!?! I mean, I know it’s severe because I feel it but this is what I mean – EVIDENCE!
The final useful piece of information I gleamed from the NHS IAPT Data Handbook (p.25) was about diagnosis:
“It is common for people with several different disorders to score highly on both the PHQ-9 and GAD7 (e.g. Depression, Social Phobia, PTSD, OCD). However, the treatments for these disorders are significantly different and therefore making a differential provisional diagnosis is crucial to ensure that appropriate clinical care is provided. This should be part of a full person centred assessment (see above, and Appendix C for advice in arriving at a provisional diagnosis).”
Well, I reckon I qualify as scoring highly in both PHQ-9 and GAD-7 – where’s my diagnosis?! Apparently they look at certain answers to certain questions on the questionnaire. Is that it?! Diagnosis?! Keep wishing! Time to get the angry page out!
Link: NHS IAPT Data Handbook