I Want People To Be Aware Of How Scared I Am Of Getting Ill Again.

pexels-photo-2225771

It’s World Suicide Awareness Day. Or week, or month – I forget how long this empty virtue signalling exercise goes on. And I thought to myself, as a survivor of more than one serious suicide attempt, what do I really want people to be aware of?

I want people to be aware of how scared I am of getting ill again.

Some background: I was in a severe mental crisis for about 16 months of my life, from January 2016-April 2017. I have severe episodic depression, which makes my obsessive-compulsive disorder get very bad. When it flared up in January 2016 I thought I was a child murderer or molester. It is hell on earth, and I did not see a way out of it. Everything was just a black hole of despair, the joy fell out of everything I was interested in. I didn’t want to do anything. Anyone who knows me knows how up for a laugh I am, smutty, sweary, irreverent, BUSY. When I was ill I was just a humourless void, a bit like a walking corpse. Lads, I was fucked.

Things got very bad at the end of 2016 and I was admitted to the bin three times – on two occasions attempting suicide due to various factors, but being weaned off opiates too quickly was one, and going onto antidepressants that didn’t suit me was another. These medication issues led to very bad akathisia (an inability to stop moving) which often leads to suicide attempts.

After the second attempt I ended up getting sectioned and spent over three months on an acute ward. You can read parts of my story over on my blog.

Anyway so I was really ill, right? And you’d think it’s the worst thing about being in recovery, that fear of getting that sick again?

It is, but not in the way you think.

The symptoms of the illness, as bleak as they were, are not the thing I’m most worried about if things go south.

[DISCLAIMER: I had a lot of help compared to some people I know, but the bar is extremely low. I am also super privileged: I’m white, educated, intelligent, with a stable family and partner who can provide for me. I have lots of good friends around me. I had work I enjoyed and valued to go back to. I’ve never had to deal with the DWP. I’m cisgendered, straight and physically abled. In my case I also won the postcode lottery in terms of getting access to the Centre for Anxiety Disorders and Trauma at the Maudsley Hospital, one of the only specialist centres for treating OCD in the country. AND IT WAS STILL ABSOLUTELY BLOODY AWFUL FOR ME.]

Here is why I’m really worried about getting ill again:

I’m worried about getting ill again because I might have difficulty even persuading my GP to refer me to the CMHT. I might end up with absolutely no help for a severe crisis where my brain is trying to kill me.

I am worried that if I am referred to the CMHT, I might only be able to see a patronising CPN once a week for three months, with very occasional psychiatrist meetings. Things the CPN said to me have included ‘Well, if you’re going to kill yourself it’s your choice’.

I am worried that if I present at A&E because I feel unsafe and I’m fighting an almighty battle in my head to try and not kill myself, I will likely be sat there for hours before a condescending member of staff comes and tells me to go home because I am attention seeking. Damn straight I’m attention seeking. I’m fucking poorly.

I am worried that if I get referred to the Crisis Team, they will probably come to my house once a day for a month for about 10 minutes at a time. They will tell me to do a crossword or have a bath when I tell them I feel unsafe and suicidal.

I am worried that if I go into an acute ward, I will be treated like a child, punished for harming myself, and patronised beyond belief. I will be assumed to have so-called ‘Borderline Personality Disorder’* and ‘punished’ by staff accordingly. I will be completely at the mercy of whichever staff are on the ward on a given shift, and whatever patients are in at the same time as me. Patients I developed real beef with while in there last time might also be there (you end up falling out over stuff like ‘who gets the jacket potato for lunch’ and ‘who gets to choose which channel the telly is on’, because you revert to being a toddler). Staff I complained about after I left might be there. It scares me shitless.

I am worried that if I need to access my specialist treatment centre again, there will be a six month plus waiting list even after I am accepted on assessment. This nearly killed me last time.

I am worried that if I need to go off work again, I will have to deal with Occupational Health. This has been both a positive and terrible experience for me at different times.

I am worried that if something happens to my partner and/or parents, I will have to deal with the DWP in order to be able to eat. This is unlikely, but possible.

All these worries are actually scarier to me than the symptoms of my illness.

Please stop telling us to ask for help, and start thinking about how society and the psychiatric system needs to change in order for people to receive the care and help they need.

I ‘recovered’ despite the system, not because of it.

by Jo Edge @hagenilda

*I’m aware this is a very controversial diagnosis and do not wish to denigrate anyone’s experience.

Please also see RITB Position statement on BPD

I Have Never Been In A Place More Indifferent To Suffering Than A Psychiatric Ward

I have never been in a place more indifferent to suffering than a psychiatric ward. People walking around in great distress must be so much part of the furniture that mental health nurses can walk past them with barely a glance.

A few nights into my stay a nurse found me crying in my room. “It’s good to cry” she said matter-of-factly, “But sometimes it can go on too long”. She got up and left, promising to return later when I’d calmed down. I wondered what point there would be for her to return when I was no longer in distress, but ultimately it didn’t matter, because she never came back. I had a similar experience a few days later. While I was crying in my room, two health care assistants entered and began to carry out a room search. They didn’t ask if I was OK or acknowledge in any way that I was sobbing. After they finished they smiled and said “Thanks!” brightly, before leaving the room as quickly as possible.

In both these encounters I believe my historical diagnosis of borderline personality disorder (BPD) was at play. My crying was attention seeking, manipulative and proof that I was unable to regulate my emotions. Had they spent time to get to know me, they would understand that I rarely cry, let alone sob in front of people. As someone who OVER regulates their emotions it was upsetting to have my vulnerability responded to in such a callous way.

These experiences reminded me how dangerous the ‘All Nurses Are Heroes’ narrative is. There were some amazing, stand-out individuals working there, whose kindness were the true bright spots of my admission. But there was a culture of indifference which allowed behaviour that was everything from incompetent to genuinely cruel. I saw staff roll their eyes or laugh behind the backs of perceived ‘difficult’ patients. The psychiatrist referred to me in the third person during ward round in a way that should only be reserved for “Does she take sugar?” disability satire. Safety did not seem to be a priority, despite the fact there have been multiple deaths at this hospital. When a patient collapsed in the corridor after taking her nighttime medication, it was other patients who helped carry her to bed. The nurse who’d dispensed it simply shouted after her, “It just means they’re working”.

Two days into the admission I got given somebody else’s medication. I had been given my own meds about an hour before so questioned the nurse whether I really needed them, but she insisted. It turns out they were a different type of benzodiazepine to the one I had just taken and were intended for a woman with a similar name. The last thing I remember clearly from that night is them frantically trying to get a doctor onto the ward when the door to the ward wouldn’t open, but after that is black-out.

The same thing almost happened again two weeks later, but this time I was well enough to refuse and ask them to double check (once again, it was for the woman with the similar name). I was also given the wrong version of my medication on three occasions – an instant release type that left me more sedated and with more side effects. As someone who struggles to take medication, these mistakes left me mistrustful and scared to continue accepting the meds.

It didn’t help that the basic environment was not taken care of. The bathroom was filthy and not cleaned for two weeks, with a blocked drain that meant it flooded every time I took a shower. When I reported these things, the message never seemed to get to the right people. They were unable to find curtains for my room for the first week, and the floodlight outside the window meant I was unable to sleep properly.

To add insult to injury, the hospital I was in has a strong social media presence, where they use buzz words like “quality improvement”, “compassionate care” and talk about being HASHTAG “humbled”. It’s a self-serving denial of reality that’s almost cult-like in nature. It allows them to construct an image of life on the ward that is pure fantasy, all the while keeping genuine conversations about patient’s experiences at bay.

Perhaps most distressing, I was treated as a detained patient throughout the admission, despite being there ‘voluntarily’. This included being prevented from leaving multiple times. On one occasion, I tried to push past a member of staff entering the ward, and a nurse shouted at me, “Hey! You’ll be getting a Mental Health Act Assessment if you’re not careful!”. Her tone was that of a parent threatening a naughty child, not a nurse informing a patient of their rights. Weaponising mental health legislation in this way leaves patients with the experience of being detained without any of the legal safeguards. I was not allowed any ‘leave’ until near the end of my admission and even then, it was hit and miss as to whether the decision to let me out had been handed over. If it hadn’t, I would be left waiting until a member of staff who HAD been informed was on shift, sometimes days.

Despite being ‘de facto detained’ I was told by multiple members of staff that they didn’t think being there would help me. Once again, I’m sure this was related to my historical BPD diagnosis. To tell a patient simultaneously that they aren’t allowed to leave, but that they won’t be helped by staying, is both confusing and cruel. I had lost all hope for myself and saw this hopelessness reflected back at me by the people who were meant to be in a position to help. All of this is contrary to the National Institute for Health and Care Excellence (NICE) guidelines for hospital admission which recommends an “atmosphere of hope and optimism” for service users, with “a clear focus on their emotional and psychological needs”. I was never assigned a primary nurse during my stay and never saw a copy of my care plan, if indeed one existed.

Ultimately, this means I’ve left hospital without a clear plan of care, and with only the side-effects of a traumatic admission. It’s an impossible situation to be in while trying to keep yourself alive through a mental health crisis. The ‘choice’ between being totally unsupported or poorly supported is a catch 22 I’m still scared I might not survive.

Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) License 88x31.png