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What is it like to be diagnosed with a mental illness?

Being given a diagnosis of mental illness can really mess with your head. It doesn't matter whether you kind of knew it was coming or if it came out of the blue, coming to terms with the fact that you'll have to live with this for the rest of your life is a lot. I share my own diagnosis story here.

Processing the shock of a diagnosis of mental illness

When I came away from my first mental health assessment I felt like I was in a bubble.

As I walked down the street I could see people going about their business, walking past me, getting on buses, going in and out of shops – and I felt completely invisible.

I felt separate from them all. I could see them, but they couldn't see me. I was in a different dimension. It was all very strange. It felt a little bit like I had entered a "twilight zone".

I had felt something similar many years ago when I witnessed a suicide. It happened very quickly and very quietly, and I was the only one on the platform who saw it take place ...

After I had given my witness statement to the police I left the train station, and as I was walking down the street – I felt exactly like I did after my first mental health assessment:

Reaction to suicide: I've just witnessed someone jumping to their death and being run over by a train. I was the only one who saw it... Did that actual happen? - Pinch yourself Zara to see if you wake up.

Reaction to diagnosis: Did that really just happen? I've just been diagnosed with a mental illness. I'm the only one who knows it... Did that really just happen? - Pinch yourself Zara to see if you wake up.

I didn't wake up, of course. Either time.

It wasn't that I felt upset or emotional – I didn't really feel anything at all.

It didn't feel like everything in my world had suddenly changed. In fact, I think I actually felt more confused by the fact that something big had clearly just happened, but nothing had really changed.

I thought there would be... more.

More information, more support, more guidance, more emotion. But there was just me. And it was the same me that went into the mental health assessment pre-diagnosis that came out.

It's just that now I had a post-it note in my pocket with a diagram scribbled on it depicting my mental illness : cyclothymic disorder.

You can read the full story of my diagnosis and how the psychiatrist left me with a post-it note in place of my mental health.

What happens after you're diagnosed with a mental illness?

I can only offer insight by telling you my experience, so my answer to this question is entirely subjective. But keep reading if you're interested to know what happened after my own diagnosis of a mental illness.

Nothing happened. I know, short story, right? Well, nothing would have happened if I hadn't got extremely defiant that evening. Let me explain...

During the mental health assessment, which lasted less than an hour, the psychiatrist briefly described my diagnosis to me and then offered an antipsychotic. That was pretty scary, I have to admit.

Psychotic? He must be mistaken. I'm not psychotic ... am I?

I know now that antipsychotics are prescribed as mood stabilisers for people who suffer from bipolar disorder. The psychiatrist did tell me this during my assessment, but I wasn't really processing the information.

When you're sitting opposite a psychiatrist and they've just told you that you're suffering from a mental illness – your head has basically gone to fuzz. There's just white noise.

It's impossible to really register anything on a sensible level, let alone find the right questions to ask in order to relieve what I can only describe as a silent "internal freak out".

I think I managed to pull myself together enough to ask at least one sensible question though – Will there be any side effects?

I vaguely recall the psychiatrist saying that I would only need a very low dose as I'm not fully bipolar, but that I could expect to feel quite sedated and that some people experience weight gain.

What I heard was - I'm going to be a fat zombie if I agree to take these meds.

"You'll also have to remain on the medication for a minimum of 6 months before we can determine if it is working for you." He said.

Oh hell no!

I asked him, sensibly, what he recommended I do, and he said that he didn't necessarily think I needed to take the medication, but it was really up to me and what I felt I needed, after weighing up the pros and the cons.

What do you say to that? I said that I wasn't sure.

So he said that he would put the prescription with a note into my report letting the GP know that the option was there if I decided I wanted to take it.

And that was it. End of assessment. End of the line.

Take control – it's YOUR mental health at stake

I have to say, it was a shock. I was in shock.

I honestly thought that there would be more to it than that.

I thought I'd be given a follow-up appointment with someone nice and friendly who would offer me biscuits as we sat down to discuss support options.

I thought there would be some kind of therapy. A list of local support groups.

I thought I might even get something that resembled a welcome pack - "Welcome to your new mental illness - here is your itinerary." I mean, where was my lollypop, damn it?

So yeah, I got a bit mad. Really quite mad actually.

I stayed up until the early hours of the morning writing and re-writing a 20-page report on all of the reasons why I thought my diagnosis was basically bollocks - cue symptoms of hypomania.

It was an extremely thorough and well-written report, complete with subheadings and bullet-pointed lists... or so I thought as I smugly proofread it for the tenth time admiring my skill - hello grandiosity! I'm surprised I didn't include a contents page.

I bypassed the doctor's surgery and emailed it directly to the psychiatrist via his personal secretary, which I had to google like the crazed stalker patient I am.

I was desperate for it to get to him before he wrote up my report and I was discharged back to the GP - completely misdiagnosed - Oh the scandal!

I can't imagine what the poor guy must have thought receiving my epic letter. He was very professional though and basically reinstated that he was standing by his original diagnosis.

When I got my copy of the report I was still very upset. I felt like I was lost on the windy moors, that no-one could hear me, and there was no search party being sent out to rescue me. So I had to rescue myself.

Readers, if you are on your own diagnosis/treatment journey - you have to rescue yourselves!

Otherwise, it's going to be a long wait, and you're going to get really wet and cold.

Somehow I managed to get a second mental health assessment with a different psychiatrist, and the experience for me was much better this time.

Treatment – weighing up the options

I came out the other end with a kind of treatment plan and the ongoing support of a professional and nurturing psychiatrist who was going to hold my hand through the various stages until we found a treatment that worked for me.

I felt safe. So safe that I'd honestly have accepted any medication or treatment she suggested - Antipsychotics? Yeah, why not! ECT? Oh, what the hell, let's do it!

No, I'm kidding. I'm kidding! No electric shocks. I agreed to try an anti-depressant. An SSRI.

Alas, it didn't help me so she said she wanted to try one more SSRI before we considered our next options. The next one didn't help either. So I was given a course of psychotherapy sessions.

My new therapist and I talked a lot about my sister. Mentioning my "diagnosis" during those sessions felt taboo because I discovered early on that they don't like to put a "label" on things.

I found myself feeling resentful and secretly blaming my therapist for the stigma of mental illness in society - if you can't mention your diagnosis to your therapist who can you mention it to?

But aside from that she was delightful. Very pretty! And hey, it was nice to have someone to chat to every week, I don't have any friends of my own.

She also put up with me bursting into tears at every session, and was polite enough not to mention the fact that I never ever took my hat and coat off during sessions. Well, not until one of our final meetings anyway.

She probably had a heyday with it when writing up her notes though...

  • Patient X has intimacy issues and uses outdoor wear as armour to shield her vulnerability.

  • Patient X is dissociated from her own identity and fears that this will be exposed if she removes her coat.

  • Patient X has not brushed her hair again today and is wearing "the hat" to disguise her self-neglect and therefore avoid exposing the fact that she suffers from "that which we do not name"...


How do you live with a mental illness?

Try to resist the urge to find a high vantage point and shout the above statement out to the whole neighbourhood and you'll be just fine!

On a serious note, it's hard, I'm not going to lie to you.

If you thought life was hard when you were blissfully ignorant about your disorder, there will be no relief for you now that you know. Or maybe that's a bit harsh. There is a certain kind of relief in knowing.

I'm glad that I know, for example, because everything about me and my perceived failures makes so much more sense now that I can see the role my illness has played in my life. It's actually rather fascinating.

But it will always be frustrating, because now I know that my brain needs medication to help keep it in balance. And despite taking the medication, it will never be fully balanced, and if I take the meds then I have to deal with unwanted side effects.

Living with a mental illness can feel lonely, even when you have people who are willing to listen and support you.

It can feel like you have your disorder written on your forehead.

People's kind gestures will feel patronising. You may feel like you will never reach your full potential, and that all of the hope you had before is futile now.

You may feel trapped in a web of medications – Every morning or evening when your phone alarm goes off to remind you to take your meds, it's a reminder that you're not who you thought you were, and you may never get to be who you want to be.

Half of the time I want to escape. I want to flush pills down the toilet and leave my life and all the people who have known me behind, to go live deep in the middle of a forest somewhere where nobody can find me, and I can just - be - me - whoever that is.

I can't tell you how many hours I have spent researching how to live off-grid, or how to build your own secret hobbit house from mud inside of a hill. Apparently that's common amongst people with our disorder!

There is an overwhelming desire to escape your diagnosis, especially in the beginning.

I've come a long way though. I know that every meltdown and mood swing just brings me one step closer to knowing myself and my illness better, and hopefully I'll be able to use this knowledge to have a better quality of life.

They say to keep your friends close but your enemies closer... and so I'm getting real cosy with my cyclothymic disorder.

Thanks for reading, and if you enjoyed it or learnt something new, feel free to help me raise awareness about what it's like to live with a mental illness by sharing this post.

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