Diagnosis

In my previous job, as a librarian, I knew well the importance of metadata. Of correct labelling. Sometimes, the labels and descriptors that we assign to an item help us to put it in its place, in context amongst other things. Help us to understand more about the item, than what we can see on the surface. I once did an exercise, thinking about how I would be described, what keywords would be attached to me, were I to be catalogued and put on a shelf in a great library of lives.

image of library catalogue card

What would we include? Title (Name) Originator (Parents) Physical description (Height, weight, sex, hair/eye colour) – beyond that though, the subject keywords – become a bit qualitative. But important – if you want to get the measure of me. My physical and mental health experiences would definitely have to be touched on. They have impacted my life and who I have become, and to varying extents still do.

So what do I put? How do I label this mess that has been in my head? Some would say – well, what’s your diagnosis? And there’s the rub. Do these things not exist before a doctor gives a name to them? I have, in my time had diagnoses of severe anxiety and depression. I still walk an ongoing tightrope with the symptoms that led to that diagnosis. But – I’ve also had conversations with doctors which suggested that there was more going on, that there was a possibility of Bipolar II, or Cyclothymia. Many times I was dismissed by doctors who didn’t want to engage. One doctor, when I persisted, said they would refer me to a psychiatrist for assessment – but never did. And I was in such a bad way at the time I didn’t follow it up. Latterly I have had much better doctors but concluded that as I seem to be managing my mental state better these days, and didn’t feel any need for medication – (which I would probably react badly to) – that I would leave the appointments to those who needed them more.

As I’ve learnt more about certain mental health conditions and understand my attachment issues, and the impact that events in my life may have had to contribute to some of “the way I am” – I can throw in other possible diagnoses that I might have been given. Or not. Recent years have given cause to think I may be on the autistic spectrum. But again – it’s not easy, quick or cheap to access diagnosis if it is not instantly offered to you on the NHS – so it is only something I would pursue if my issues, symptoms or behaviours started to significantly affect me in a negative way again. For now, I just use that tentative information in my head – to help me understand myself better. I might react like this, feel this way, find this difficult – for this reason. Sometimes that helps me find new coping mechanisms.

Diagnosis, after all, is just a label. A name agreed on by a bunch of doctors to describe a set of symptoms which seem to occur together in some people – and be helped by particular medications or therapeutic approaches. They change their minds over time. Fine tune their understanding.

The problem comes, if you need a diagnosis to access help. For instance – if my anxiety and depression were not “simply” that (not that it is ever that simple) – but were instead part of a Post Traumatic Stress response. Without someone recognising that, and referring me for appropriate treatment, perhaps EMDR – I may find myself revisiting medications and therapies that never quite help me to get the breakthrough I need to have a chance at recovery.

If my anxiety or depression affects me to such an extent that it impacts my work – maybe I am late a lot, take sick leave, or find certain tasks impossible. Perhaps my boss knows this, can see it, and wants to make adjustments to help me. But the HR department insists upon medical reports and Occupational Health visits to “prove” I am really ill – not faking it. But I am too nervous or stigmatised to go to the doctor, or cooperate with Occupational Health. The boss feels he is not “allowed” to help. Even in simple ways which are easily manageable across the team.

Problems don’t become real when you go to the doctor and get it labelled. I had lived with depression for 10 years at least before I even spoke to a doctor. Those other issues, for which I have no approved diagnosis – have had no less impact on my life and work for the fact they are not mentioned in great detail on my medical records if at all. I am fairly certain that the Equality Act does not require diagnosis for an employer to be expected to consider what adjustments can be made to help someone overcome a disability. Sometimes those around us recognise there is something amiss before we do. Sometimes we are in denial.

One of the things I like about Mental Health First Aid is that it doesn’t seek to make you a counsellor, a psychiatrist, a doctor. While it teaches you about some diagnoses that people may get – it doesn’t expect you to figure out what exactly is going on with someone. It helps you to understand possibilities – but emphasises that actually – diagnosis isn’t your job. Maybe sometimes it is going to be a necessary part of someone’s recovery – but figuring it out isn’t our role. Our role is recognising that someone is in distress, offering support, a listening ear, practical help – and signposting to services which may help – and may involve diagnosis. Or not. 

There are many roads to recovery. Diagnosis may give access to some wonderful new build bypass that gets you there quicker. But it also might prove to be a dodgy sat-nav that takes you off a cliff, or down a dead end road. Finding things that help with the feelings and symptoms we are experiencing, and learning to understand why we are experiencing them – could be more helpful for some than knowing the precise name a psychiatrist might put on that catalogue card. Especially knowing they might change their mind a few years down the line.

That being said – assessment and diagnosis need to be more accessible for those with severe and enduring mental health issues. It is more luck than judgement that I am still here to write about this. My teens and twenties were dangerously volatile at times – and I really should have been assessed. Who knows what life would have been like if I had. (Though I am under no illusions that it would necessarily have been better had I been further entrenched in “The System”. I’ve seen enough nightmare stories not to be that naïve) Sometimes, we can catch things early, we can make changes, we can learn techniques. But sometimes it is too late. Sometimes it is too much for us to bear alone. Sometimes the issues are much more complex.

In theory, if everyone experiencing mild or moderate mental health issues is helped to self-manage better, helped to access medication or short-term support, then their issues will not deteriorate and become “severe”, and things might free up down the line. Though those being trained to deal with those quick fix interventions are not going to be qualified to help in more complex cases, and it is no good telling those with severe mental health needs now that things will get better in 10 years time. 

It is not a simple picture. More money, more people, and a wholly different system approach are needed to even scratch the surface. I do still think the more we can do to support each other at all points along the way, in work and in the community, is worth doing – if only to provide comfort through dark days, and help us to remember we are not alone.

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