Never give up – By Katerini Edgington

 

“You can’t finish your degree; you have a mental illness.”

“You don’t need a job; you’re entitled to benefits.”

“You have a mental illness so you will find having a relationship virtually impossible.”

 

2003: My first experience of life on a psychiatric ward and the first time I ever encountered a social worker.  After six weeks in captivity it was time to be released back into the world.  I wanted to finish my degree, I was two months away from handing in my dissertation and one step closer to that all important cap and gown.  I didn’t know my mental illness would dictate my future or that my Bipolar Disorder went hand in hand with a social worker who was telling me the exact opposite.

I was consumed by disappointment.  Was this it?  Single, jobless, my mum forced into being my “carer” because a social worker said this was all a mentally ill person could expect from life.  I’m not usually one for being told “no”.  Tell me “no” and I will try my hardest to prove you wrong – it looked like I had to prove the social worker wrong too.

It was never an easy journey and it took over ten years but I did achieve the things I was told I never would.  I finished my degree, I got a job and I even got married!  I’d like to take the credit for having the ability to do all of this alone, but that would be wrong.  In 2011 I was begrudgingly introduced to a Community Psychiatric Nurse (CPN).  I didn’t want a CPN and I made that very clear when I met her but I was wrong to assume she would treat me the way numerous other people had.

Instead she showed me that by learning about my illness, myself and my medication, I could adapt my lifestyle and live as much of a normal life as the next person. 

In 2014 I became a public speaker.  I speak in schools, colleges and universities across the country in the hope that telling my story ignites change in people’s perception of mental illness.  I believed that I was creating change in a world where mental illness is still taboo. 

In 2019 when my CPN retired, it was the beginning of a new life for her and an unfortunate awakening for me.  In February 2020 I found myself sitting in A&E.  My newly appointed CPN hadn’t answered any of the calls or messages that I’d left over the course of three days and I couldn’t reach my psychiatrist. 

I was obsessed with music by Panic! At The Disco. Brendon Urie was talking to me through his lyrics.  I had an alien being that was taking over my mind, trying to create a destiny that I had no control over.  For six months I had been aggressive and angry.  I spoke out of turn and every problem I had in life was someone else’s fault.  I was the opposite of me.

In A&E I had a choice.  Hospital or Home-Based Treatment (HBT)? After six horrendous admissions I promised myself I would never go back on the wards.  I thought HBT was my best option.  I could stay at home, sleep in my own bed, be with my family. 

The next day two people came into my house.  They asked me what I thought I needed and my answer was simple: a review of my medication.  This episode couldn’t be my fault.  There was no trigger, no evidential reason.  It had to be a medication problem.

After thirty minutes my key worker said:

“There’s nothing wrong with your meds.  You’re just too busy.”

“You need to stop the public speaking.”

“Stop seeing your friends so often and stop working.”

When I tried to explain that I had worked incredibly hard to get to where I was, physically, socially and professionally my key worker said…

“Exactly, you’re Bipolar so you shouldn’t be working hard at anything.”

She was not a psychiatrist or a nurse but she thought she knew best and cancelled my appointment with the team’s psychiatrist three times.  If I stopped doing everything in life that I loved, I would get better. 

Right then it hit me.  Déjà vu.  It was seventeen years after I had met the first social worker and here we are in 2020 with someone who was telling me exactly the same thing: the mentally ill can expect nothing from life because of their mental illness.

When I finally saw the psychiatrist he told me my Bipolar episode had been induced by a medication I had started six months before.  It was not my fault.  It was not my lifestyle.  My key worker was wrong.

When I relayed this back to her she told me I was being overly critical and ended the call.  She said I was difficult and non-compliant, but I needed help; help that she was supposed to be providing. 

When my CPN retired I naively assumed things had changed over time.  I accept that people work differently and everyone is entitled to their own opinion, we’re all human, but let’s not forget that people living with any kind of mental illness are entitled to a happy and successful life according to their own definition.

I’m allowed to have dreams and goals, I may not achieve all of them but it is not down to social workers, CPNs or even psychiatrists to tell me what those are.

In the middle of the HBT chaos my friend gave me a bracelet that reads “never give up” in Morse code.  She wanted me to have a reminder that I never gave up in the past and I shouldn’t give up now.

There is so much work to do when it comes to mental health and however disheartening the world may seem, no matter how flawed the system is, as individuals we are absolutely entitled to a happy and fulfilled life and we should never give up trying to achieve it.

So to anyone who is struggling or losing faith, do what my bracelet says and…

“Never give up!”

Written by Katerini Edgington – Spathis

Published on July 17, 2020 at 11:18 am

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