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Being Human Together: Coping with the Lived Experience of Fear During the Covid-19 Pandemic

For those of you that don’t know me, my name is Iris Benson, but please just call me Iris. For these past few years, I have worked with the NHS, as well as other private organisations and charities as what often gets called an ‘Expert by Experience’ or a ‘Person with Lived Experience’. Experience of what? you might ask. The sort of experiences that nobody chooses, or that nobody ever wants is perhaps the most honest answer; of severe long term childhood abuse continuing through adolescence, of violence during my first marriage, of many years as a revolving door patient within adult mental health services. These have been my lived experiences, those of trespass, invasion, of fear and trauma.

The rising uncertainty, anxiety and fear

As I reflect today on the last few weeks I can see the impact that the Covid-19 virus has begun to have on an already over-stretched NHS, and on mental health services in particular. Of those places where uncertainty and anxiety lurks during the ‘best of times’, and as all of the caring and compassionate staff members negotiate what might be described as the ‘worst of times’ I can see the fear and uncertainty rising, specifically the growing fear of trespass and invasion; of the virus and of those that would spread it. From my lived experience I also know what fear can do to people, and how it can reveal itself. Even when people don’t want it to, or mean it to. It’s at times like this that I hope the insights of people with lived experiences like my own can help those wonderful people that have helped us on our journey back from trauma.

It’s at times like this that I hope the insights of people with lived experiences like my own can help those wonderful people that have helped us on our journey back from trauma.

Sharing our lived experiences to help others overcome and understand

I have been saying for a very long time that we are all human beings, and we all have a vast array of lived experience. A very dear colleague and friend of mine and I developed and delivered a presentation called “Same But Different”. For me and many others it brought home the stark reality of just how people with learning difficulties and learning disabilities, as well as people who have lived with physical and mental illnesses have so many gifts to offer. With the right help and support they can be used to help clinicians in all areas understand just how it feels to try and fight not only the battles with illnesses, the judgements and stigma and the misconceptions of not being “Normal” (whatever normal is perceived to be), but of living with fear. I would not be here without the staff who have been with me on my journey to ‘discovery’, rather than ‘recovery’. I say this because as I have recently been reminded that the impact of trauma is enduring, and susceptibility to fear is very human.

the impact of trauma is enduring, and susceptibility to fear is very human.

Fear is part of the human condition. It’s something you can’t escape by isolating yourself, physically or psychologically. This recently hit home to me. I have now been at home for coming up to 3 weeks, and I should have realised things had started to happen. But for me as a little child I wasn’t allowed to tell. If I told, as the voices in my head constantly remind me in explicit detail, I would suffer terribly. But we all respond to those things that scare us or cause us fear in common ways, we take flight or we fight.

During these terrible and frightening times, the wonderful teams in hospitals across the country have suddenly been thrust into the public spotlight. They are there, saving lives. The country needs them, and needs them to be strong. But let us not forget they are all human. They all feel fear, but we as the public don’t want them to reveal that. We want them to ‘keep calm and carry on’. This just means that the fear gets pushed down inside. People try to ignore it like I try to ignore the voices inside my head.

Remembering what helped me then, to help me now

When I am in work only a few people know the battle going on in my head. Without them, I would not be able to continue. My manager supports me in so many ways, and I trust her probably more than anyone outside of my family. Recently I suddenly realised that my protections had gone, my whole routine, my structure, my focus: all gone. I became scared, my thoughts became intense I was listening and behaving exactly as I was told. The worst shock was that I was frightened to tell anyone that my mental illness, the trauma, had crept up on me and I hadn’t even realised.

The worst shock was that I was frightened to tell anyone that my mental illness, the trauma, had crept up on me and I hadn’t even realised.

By the Sunday of the second week, I suddenly realised that I was very quickly becoming unwell. Old very disturbing coping skills stated to happen: cleaning to the point my hands were bleeding and sore, self-neglect, trying to get things right so I didn’t get into trouble, I wanted to be punished for not doing as I was told, I was constantly being sick, I was sicking up the devastating memories, and as I sicked them up they welled back up and I was sick again. I was either sleeping too much to block it all out or not sleeping at all. I am not a nasty person, but my Behaviour when I am frightened may be scary and hard to understand but in no way my fault.

Within the context of my day-to-day work in the NHS I try to help staff understand the reasons for behaviour, understanding the ‘why’, to avoid blaming, responding through heightened emotions such as fear or anger, and not retaliating or imposing a restriction. My motto is: we need to listen to learn, to understand.

we need to listen to learn, to understand.

I think at this point I decided in my mixed up today world, that I had started to get so frightened that I was going to end up going back into mental health service. Suddenly the stark reality of this, gave me such a kick up the bottom that I started trying to think of my earliest days in therapy and what helped in very simple ways to get me more focused.

I started with my lists again, not unachievable ones ten pages long, but just two things I could achieve, I did those and ticked them off. They were things that didn’t take any concentration.

I used my MP3 player and my headphones to help drown out the intrusive voices, I listened to the beat, then to the words.

Short little bursts of rest still no sleep but noticing and concentrating, those little steps that truly made a difference.

A good deal of self-talk in a careful way. This is because it isn’t easy to challenge the voices, as they still scare me.

So then I thought “What Can I Do?”

I think the fear and uncertainty arising from the Covid-19 pandemic has led some to engage in a form of flight behaviour when they say “we can’t because…”

So then I say “Why?”, and follow up by asking “What Can We Do?”

We need to keep the humanity

I am really aware that very quickly if we don’t continue to support people in our care, we lose the humanity, the very human interactions that have started to make a huge difference. It has taken years to start changing the cultures and attitudes, that just like my mental health trauma they will slowly but surely start ever so quietly and subtly to creep back onto the wards and the very vulnerable people in our care will start being restrained secluded and medicated, so control and restraint start to be the norm again.

While all of this has been happening my mind became a battlefield: 
The person experiencing fear: “No we can’t because of…”
Me: “Yes we can…”.
The person experiencing fear: “It’s too dangerous. too risky…”
Me: “So how can we support people together, to make a difference?”
Me: “How are we making people feel?”

Because of my lived experience I know well just how scared we are making people feel. I have been restrained, secluded chemically restrained, both as an adult and as a child, it’s scary, it hurt and I have never ever forgotten it.

We cannot afford to undo all the great work, all the learning and understanding we have done, all the difference we have made by reducing restrictive practices/interventions and the reduction in long-term seclusion. If we are not careful, all of this will be just like my memories. My fear will start to creep back in. I have heard from very reliable sources this is already happening. People in our care are scared, I know just how scared. Most staff don’t want to go back to that time, none of us do.

It has taken so long to challenge the perceptions some make of people like me. In some areas we have helped staff understand just what stigma and judgements do; it causes us to be seen as difficult, violent, attention seeking and worse. Behaviour is a form of communication, if people are frightened their behaviour changes.

We are all human beings.
We are all individuals.
We are, as I always say, the “Same but Different.”

Behaviour is a form of communication, if people are frightened their behaviour changes.

As I had quickly realised because my routine had changed, I lost my focus, and my structure. My mind sent me back into how it used to be. It was quick, it was subtle, and believe me I was so scared.

I suddenly decided thankfully I was safe enough to say, I was Ok not to be Ok. I plucked up the courage to ask for help. My manager told me she was scared so I reminded myself, I was scared when I was little, I am now big and still scared.

I started to repeat in my mind that little sentence I was supported to learn in my early days in EMDR therapy, the words: “That was then, this is now. Just notice…”

I noticed it wasn’t easy to tell, but I did.

“That was then, this is now. Just notice…”

Whilst still very fragile, but doing my very best utilising my lived experience. I can help others in my untrained, unqualified way to listen, to learn and understand. I certainly don’t need a degree to care, I am willing to share and support others in the only way I know.

Covid-19 has and is taking away our loved ones and our dedicated colleagues. I totally understand that right now our staff have so many other pressures being placed on them, and I know they have so many important things to think about. I have been around a long time, and when this is all over, I hope then we don’t return to a culture of control and restraining people. The people in our care cannot even go out on section 17 leave due to the virus, I know there is such a risk, but we can still do things on our wards to support and prevent us going back to the way it used to be.

We just need to live in hope.

By Iris Benson