My head hurts

Ole Hedeager, CC BY-SA 4.0, via Wikimedia Commons

cw: suicide/self-harm

According to my site views, nearly 150 unique visitors saw my (now removed) blog post the other day – normally I’d be pretty happy about that, but the post yesterday really wasn’t great. It’s not that it was badly written, but on reading it back today it just isn’t the type of post I want to making. Let me explain why…

But first, a quick Psychology lesson

Psychosis has a very unfair reputation – not many people outside of the context of working in mental health fully understand what it means. The NHS defines it as:

Psychosis is when people lose some contact with reality. This might involve seeing or hearing things that other people cannot see or hear (hallucinations) and believing things that are not actually true (delusions).

Most people have unfortunately formed their opinions based on how a “stereotypical psychotic person” behaves in movies and on TV, and this tends to involve violence, threats and a wholesale inability to be reasoned with. They are the “textbook crazy”, but this is for most intents and purposes, a wholly inaccurate portrayal.

For me, and I really can only speak for myself as psychosis is different in everyone, this presents as more on the delusional side than the hallucinatory side, with a severe episode causing havoc to my ability to work out which thoughts and memories are real, and which ones aren’t.

So here’s me going on the record and saying that I suffer from psychosis, and that I have experienced psychotic episodes for a couple of years – these temporarily altered states of mind can be so severe that they affect almost every part of my life, or so mild that I can work around them fairly easily.

See page for author, CC BY 4.0

A bit of background on how I got here

My first psychotic episode happened a few years ago, not long after completing University.

I tried to deal with it like any well-adjusted young adult would – alcohol, a bit of substance abuse and lying through their teeth that everything is fine when their friends asked. This wasn’t a long-term solution, even if I had convinced myself all these invasive thoughts and delusions would pass, but they didn’t. [cw, hover to view] Instead I ended up self-harming regularly, working up to finally making a concerted effort to kill myself before being discovered by a friend and rushed to hospital.

Here in the UK, we have specialist NHS teams for first episode psychosis, and I was very lucky to be somewhere with a large and friendly EIP team.

Early Intervention in Psychosis (EIP) are multi-disciplinary teams set up to seek, identify and reduce treatment delays at the onset of psychosis and promote recovery by reducing the probability of relapse following a first episode of psychosis.

Being referred to the EIP team because of a suicide attempt resulted in a stay in hospital where I was not permitted to leave. This was a scary experience, and although I didn’t actually want to leave (I was lucid by this point, and knew I needed help), having a choice as basic as this taken away from me was terrifying.

This first psychotic episode, and the resultant diagnosis of “major depressive disorder with psychotic features” (more commonly referred to as psychotic depression) were two of the main contributing factors to the large break from Wikipedia, and the majority of my life in general, that I’ve previously mentioned.

With a lot of treatment and therapy, severe episodes are now rare and the majority of other symptoms are mild and infrequent, but psychotic depression doesn’t ever really go away. I’m going to have to live with some part of it for a very long time.

MesserWoland, CC BY-SA 3.0

Bringing it back to Wikipedia

I’ve never mentioned any of this on Wikipedia until yesterday, nor have I ever seen the need to. To call myself psychotic puts a label on me which can bring nothing positive, other editors knowing about the condition doesn’t really help improve the project and frankly I was worried it’d make me look like a high maintenance editor and untrustworthy of the functionary tools.

For the past few years I have rigorously ensured my actions on Wikipedia have never been influenced by my condition – I am normally self-aware enough to at least identify the onset of an episode and step away from the site – my “first line interrupter” is going for a run, so this tends to work out well.

Now what?

This post has been really tough to write, even though I’ve already written about these experiences elsewhere, quite a few times – I guess knowing that a different set of people are going to potentially read this worries me, as I would hate to be judged on a condition that I, to date, have only made visible once.





4 responses to “My head hurts”

  1. Ed6767 avatar

    Sam, thank you for sharing your experience with us all. I know this mustn’t have been an easy write for you, but I’m glad you have gotten it out there, and it was a very interesting read. Whilst I can’t go into great detail, mental health issues run within my family, and I have so many friends with mental health issues, including the struggles I face myself with Tourette’s Syndrome and (insert yet undiagnosed problem here). Unfortunately, or fortunately, I have seen a lot, but I usually see these developing in teen years, so hearing your perspective with psychosis with a, as a I see it, comparatively late onset has been very interesting. It must have been very scary having to deal with almost not knowing what was going on, and maybe even having the image of yourself and your emotional and mental well-being shattered almost overnight, so making this sort of blog post couldn’t be easy for you, but I’m glad you posted it, and more importantly, I’m glad you’re still here too post it. The amount of strength your journey must’ve taken, I know we don’t know eachother, but I am proud that you have gotten through it and I am so happy you made it to today <3

    1. Sam avatar

      I really appreciate the comment, thank you – I’m not amazing at writing these things so I’m glad the “point” apparently came across well.. 🙂

      Keep on keeping on, its all any of us can do (as well as getting help, etc.)

  2. […] Edit: I wrote about this here. […]

  3. […] have publicly disclosed a significant mental health condition (the same which I have posted about here previously) on my user page, in an effort to reduce the stigma editors […]

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