Papercuts: restorative approaches and cumulative harm in mental health care

The cynicism and hope of a long-term service user

(Please note: there are academics and practitioners actively studying this topic who will have more knowledge about this subject than me. I write as someone who has personally experienced trauma within mental health services and has had glimpses of ways in which restorative practice could help to tackle it.)


How it began for me

A couple of years ago I was asked to be involved in a participation project with mental health staff called ‘Reducing Restrictive Interventions’.

We split into separate groups (one of staff and one of service users), each with a facilitator, to brainstorm. One member of staff misunderstood the instructions and joined our group. None of us said anything, assuming there was an unspoken reason for her joining.

We talked about restrictive practices on the ward and how they affected us, from small things like not being allowed to congregate and chat in the corridor, to more painful things like restraint and seclusion. The staff member listened intently to what we said and acknowledged our experiences, saying it was very helpful to hear. She then tentatively told us about how imposing restrictions upon us sometimes made her feel, and we listened in return.

It hadn’t been planned. Out of nowhere a safe space materialised where testimony was heard and acknowledged on both sides. For that 20-minute slot, we were no longer staff and service users – we were human beings, equal to one other, listening and acknowledging with empathy and compassion.

The whole group agreed that it had been an enlightening experience, including the member of staff. I thought about how incredibly helpful it would be to have opportunities like this occur more often. It wasn’t until I recently came across a piece written in in the British Medical Journal by Dr Sarah Markham, that I realised what had emerged that day was the kind of space and situation that restorative practice (also restorative justice/approaches) works to create.


What is restorative practice?

Restorative practice can take many different forms, and for more comprehensive explanations, please see the links at the end of this piece.

The way I understand it is as a coming together of people who have been involved in a conflict, difficult experience, or trauma, in order to share the impact it has had upon them.

It can be used to repair specific relationships or harms that have occurred, or it can be a more general expression of thoughts, feelings, and needs in a mediated safe space where everyone is listened to without interruption or judgement. The idea is to create empathy, enable mutual understanding, and to then work towards a satisfactory resolution for the benefit of all.

Restorative practice and approaches are already used in various forms in a number of sectors, such as criminal justice, community mediation, and in schools.


Why might we need restorative approaches in mental health?

Restorative approaches could help by:

  • Reducing the impact and level of trauma felt by those within mental health services.
  • Improving staff/patient relationships.
  • Improving mental health outcomes and quality of life for all.

Despite it being a contentious issue that not all are yet ready to accept, harm occurs regularly within mental health services and on psychiatric wards.

Many are harmed by the most obvious major practices of Mental Health Act detention, coercion, restraint, forced seclusion and sedation (which is another article in itself!) but harm also occurs in smaller, more insidious ways.

These include verbal abuse, gaslighting, neglect, withholding care, lying, making decisions without the patient, breaking trust, not listening, ignoring, being dismissive, and acting without care or compassion.

When cumulative, these can become more painful than the bigger harms. They are thousands of papercuts that never heal.

They are also inflicted upon us by individuals, with faces and voices that we never forget.

It is these cumulative harms that I would like to focus on in this article, because it is these that I feel are most unacceptable, most avoidable, and also could be most easily tackled by restorative approaches.

Of course, mental health staff are also harmed by what they experience at work. This could be directly through violence and abuse from unwell patients, high-stress work environments, or by being implicit in restrictive interventions or practices that they do not necessarily feel comfortable with.

Staff are not subject to coercive and restrictive practices, and they implicitly have more power than a service user even at the lower end of their pay grades, but they are certainly still vulnerable to stress and trauma.

Psychiatric wards are trauma machines: harm is recycled and passed from person to person in an enclosed space within a rigid, heavily bureaucratic, emotionless system, totally unfit to deal with the complexity that is humanity and human emotion, let alone that of mental distress.

Relationships between staff and service users are often strained. Each views the other as an oppositional unit which they should be wary of and therefore protect themselves from. This creates huge rifts that undermine the therapeutic benefit of services.

Mistrust stops people reaching out for help in the future. Although I am engaged with certain staff in community services, I definitely think twice about calling the office in crisis in case I speak to someone who is less than kind. I have learned over time that this happens as often as not, and mine is not an unusual experience.

A lack of trust also adds to service users’ issues with healthy relationships in general: feeling suspicious or afraid of others can lead to further isolation from peers and greater society and worsening of the original mental illness.

Of course, there will always be those who find their interactions with mental health services supportive and helpful. This must be acknowledged, and I am happy that those people certainly do exist.

Where trauma is felt, however, patients are dealt an extra burden to recover from in addition to the illness or condition that brought them to services in the first place.

In this way, mental health services actually perpetuate mental illness and distress.

In particular, those deemed to have a personality disorder (a contentious label at the best of times) have often been on long journeys through services, experiencing exclusion, gross misunderstanding of needs, verbal abuse, threats, coercion, prejudice, not being believed, and a stark lack of compassion. All of this mirrors and reinforces trauma already experienced in personal lives and outside of mental health services.

Like a snowball rolling down a mountain, trauma and pain and their associated difficulties stick to the original, core problem as you as you go, eventually making you so heavy with pain that you become formidable, dangerous, and impossible to treat in the eyes of those who helped make you this way.

Those who have spent years in services can find it impossible to detangle the trauma that existed originally from that gained since.

It doesn’t make sense to be healing and hurting people at the same time, particularly if you want them to thrive and get free of the revolving door of repeated discharge and re-admission.

Only months after being discharged from mental health services, I was referred back again by my GP for serious dissociation triggered by memories of what I had experienced as a psychiatric inpatient. I displayed many symptoms of PTSD, including flashbacks, nightmares, hyper-vigilance, and numbness, and needed another round of psychological sessions to help me work through them.

Not only was this extremely distressing for me, but it set back my recovery by at least another year, something that I’m still working on. It also meant I used precious mental health resources that could have gone to someone else had I not suffered the trauma in the first place.


Are restorative approaches feasible in mental health?

Formal Approaches

In a dreamworld, everyone who has been cruel and neglectful to me in a healthcare setting would come and sit with me and we’d use restorative approaches to work it through. We’d have conversations about how it affected me, and they would listen. I would ask the ‘why?’ questions I’ve always wanted to ask and listen to them in return, hopefully they’d apologise or at least reflect, and we’d repair things and find a way through that felt better.

This is an unlikely situation for service users.

There is rarely a single ‘perpetrator’. We often hurt from many actions from many different people, that have chipped away at us sometimes over decades of damaging interactions with mental health services, when we were already at our lowest and most vulnerable: those papercuts.

We have no chance of facing all of those who hurt us. Would they even remember the nasty comment they made years ago? Would they remember a single situation even months ago, during yet another busy, understaffed double shift?

(Most likely not but, rest assured, we definitely do.)

They might not even see what they did as wrong or negligent, or may not want to admit it.

One of the underpinning principles of restorative practice is that it must be voluntary – everyone has to consent to join in and so there needs to be a willingness to engage.

Services and staff may feel that restorative practice will involve some admittance of mistakes or of neglect and abuse, and it is unlikely they will be happy (or able) to do that.

Due to this, I feel that more formal restorative approaches like those used in criminal justice, with an obvious victim and offender, are most likely not feasible in mental health services.

Grassroots Initiatives

Spandler and McKeown (2017) suggest that grassroots truth and reconciliation initiatives might indeed be what is needed, particularly in the absence of the interest or enthusiasm of services and psychiatry.

They describe instances of grassroots and service user led mental health organisations in the USA that have made use of community-based models and healing circles to hear testimony from those harmed, whether staff or patient, and also to hear from those who did not feel harmed – all viewpoints being equally welcome and compassionately acknowledged.

Perhaps something like this could be helpful.

I know from the experience I described earlier that if you can turn a room of service users and staff into a room of human beings, even for a short while, amazing things can happen.

There would need to be a level playing field offered, and a space of safety for all to be able to speak and listen, wearing no official ‘hat’ of service user or staff member.

There would need to be no repercussions for sharing, and it would need to take place in a neutral space, so not in a hospital meeting room.

There already exist initiatives amongst service user only communities where testimony is heard in safe and non-judgemental spaces, providing those who have been hurt a forum in which to express pain and anger, and for that to be acknowledged.

I am currently involved in project ‘For The Record’ with the grassroots service user group #MadCovid, where experiences are shared via closed-group presentations of writing and creative pieces on the theme of iatrogenic harm.

Supporting each other in this way is helpful, and for some it is the only forum in which they feel safe enough to truly express their feelings. However, it is no surprise for us to hear the trauma of our fellow service users. We know it only too well.

There is absolutely a place for this work, but for true restoration I feel that those with other viewpoints, perspectives, and experiences need to be included and need to listen, or we risk remaining in a well-meaning echo-chamber, with no real movement towards remedying the situation.

I like to think that there are staff and patients who would genuinely want to take part in informal initiatives that aim for better understanding for those on all sides.

Service-user led initiatives may not be impartial enough for this specific task. We need projects formed by both ‘people who work as staff’ (a distinction from ‘staff’, which is their official capacity whilst at work) and service users, and/or by allies who are completely impartial.

As it would be a voluntary activity engaged in outside of work time, that could be off-putting to staff who already work long hours, but if touted as an exercise that could enrich them personally, rather than a work-related box-ticking exercise, it could perhaps be more attractive. There will always be those who are not at all interested, but I believe there will always be those who are.

Meetings or circles should be trumpeted as positive, welcoming, healing spaces that are not about apportioning blame. The idea is to enrich understanding and empathy on all sides, which could go some way to better relationships within services and hopefully to change opinions and behaviour towards those previously seen as an oppositional group.

They would need to be closely guided by restorative principles, impartially managed, and only joined by those distinctly wanting to work towards restorative ends.

An important question at this point is: do we need to come together with specific people who were involved in our own individual experiences, or is hearing testimony from anyone, even people we don’t know, still helpful? In an informal meeting like this there would be no guarantees about who might attend.

As I said earlier, we may wish for the opportunity to face those who wronged us, so we can ask specific questions, understand particular instances, maybe even share apologies, but the chances of this are low.

Hearing from others who have been in similar situations (on either side) might not give us that, but it could still help expand empathy for and understanding of each other, break down oppositional barriers, and help us see each other as human beings, all with capacity to hurt and be hurt.


Will restorative approaches actually make any difference in terms of harm?

Despite me advocating for restorative practices, there is a dark, hurt voice of cynicism deep inside me, one which most long-term service users will know well. It says that nothing will ever be enough to make up for the pain that has been inflicted.

I’m trying not to listen to that voice, because I want to be more hopeful than that, but I acknowledge that there are many who have been hurt so badly that these drops in the ocean will seem nowhere near good enough, and I fully respect that.

There will be many people who won’t like these ideas. They won’t want to relive their traumas or remember certain times of their lives. Some understandably won’t feel able to be vulnerable around the ‘opposite team’ who has caused them so much harm. Many will be afraid of repercussions and further victimisation.

We need to acknowledge and be mindful of this.

I do think, however, that proactive restorative approaches could go some way to lessen the cumulative harm that occurs within mental health services.

If we deal with each papercut as it occurs, we can help to stop it building up into trauma.

Proactive Approaches

A difficult interaction occurred recently between myself and a professional within services. She made a mistake that broke trust and at the time it really upset me. Trust of mental health staff is already something I find difficult.

When we were next in touch, she set aside a good 15 minutes of our appointment to talk about it. She apologised and completely owned the mistake. She didn’t make excuses and she listened to me explain why it hurt me so much. We talked through it. She did not rush me or minimise my emotions or reaction.

The fact that she had the courage and integrity to initiate this conversation made a huge impression on me.

It may seem obvious that someone would do this, but it is not something I have experienced from a member of staff before.

She was so demonstrably honest and compassionate that we quickly repaired the relationship and the hurt I had felt disappeared. I also apologised to her for how I had reacted when it happened, and we were both able to agree to move on.

Just a single restorative interaction like this can give a service user hope and a renewed faith in services in general. It creates a welcome contradiction against the idea that ‘all staff are bad’, or ‘I need to protect myself from staff’.  

The more examples we are shown of compassion and kindness, the more that serves to challenge ingrained views of staff and services as a homogenous group of cruel, neglectful people.

This experience has helped me to believe it is possible to have the restoration we seek with those who have directly hurt us if it happens as soon as possible after the incident.

Apologies are probably best left to occur in organic and spontaneous ways in order to protect their sincerity, however proactive restorative approaches could be part of a new way of working. Examples include improved communication styles and time set aside for restorative and reflective catch-ups with service users, as the need arises.

Restorative approaches in schools often include the use of restorative communication. Staff and pupils are encouraged to make ‘affective statements’, where they communicate to each other how they have been affected by the actions of the other, both positively and negatively. They also use ‘affective questions’ to explore things that have happened and how they could be best resolved as they arise, avoiding the use of blame or accusation.

Time is taken out to have restorative talks, as needed, which could just be a couple of minutes or longer if needed.

Something like this might be really helpful if it was embedded within mental health services, for both staff and service users to make use of.

It might be viewed as more work for already under-resourced staff teams, but I genuinely think it would be worth it in terms of improved relationships and outcomes for all involved.

It could also help improve communication skills, assertiveness, and skills for dealing with confrontation on both sides.

I acknowledge that issues of mental capacity, distress, and illness are factors to consider that aren’t as relevant in the school environment, but ways in which proactive restorative approaches could improve the mental health environment are definitely worth exploring further.


In conclusion

In believe that informal restorative approaches, utilised as we go, may be the best format for mitigating cumulative harm within mental health services. These have certainly made the most difference to me personally.

In addition, there could be grassroots initiatives that bring people who work as staff and people who are service users together voluntarily and on equal grounds, in order to learn more about each other’s experiences.

Restorative approaches may seem too meagre to make a dent in the impact of harm caused by mental health services. There is no doubt that social action aimed at general reform of mental health services and legislation is desperately needed in addition to any restorative work.

Bloom & Farragher (2010) call for organisations to be “trauma-informed systems” run to be more like living organisms, “capable of all the same emotions, processes, learning, disease and change that any other organism experiences”, instead of cold machines.

I think restorative approaches, especially proactive communicative ones, should be a key part of that vision.

I don’t have all the answers, but I know that ignoring the fact that trauma occurs within our services isn’t working and is a ticking mental health timebomb.

I also know that the interactions I have had with staff on a human level have made the biggest impact on my ability to heal and have faith in people, more than any psychology session or medication ever has.

Those interactions have expanded my own capacity for empathy with those who care for me and have most of all allowed me to feel hope that things can change.

I do think it is important to bring restorative approaches to mental health services, even if the efforts at first seem small. More opportunities, spaces, and interactions like those I have described – informal, voluntary, human – would contradict negative experiences, foster better relationships between staff and service users, and make small but solid steps towards repairing harm.

To achieve this, big work desperately needs to be done, but I personally believe enough small, reticent stones cast out in hope could cause enough ripples to begin to rock the boat.


References:

Bloom, S. and Farragher, B. (2010), Destroying Sanctuary: The Crisis in Human Service Delivery Systems, Oxford University Press, New York, NY.

Markham, S. (2018), “Dealing with iatrogenic harm in mental health”, British Medical Journal Blogs website, available at: https://blogs.bmj.com/bmj/2018/12/04/sarah-markham-dealing-with-iatrogenic-harm-in-mental-health/ (accessed 26 Mar 2021).

Spandler, H. and Mckeown, M. (2017), “Exploring the Case for Truth and Reconciliation in Mental Health Services”, Mental Health Review Journal, Vol. 22 No 2., available at: https://www.researchgate.net/publication/316848109_Exploring_the_case_for_truth_and_reconciliation_in_mental_health_services/ (accessed 26 Mar 2021).


Links for further reading:

What is restorative justice?

Principles of Restorative Practice

Restorative Justice and Restorative Practice

Restorative Justice in Everyday Life

Restorative Approaches in Schools in the UK

Time to Think: Using Restorative Questions


Copyright 2021 Zoe Layton. All rights reserved.

What is it like to live with Visual Snow Syndrome?

Living with visual snow is not just about dealing with the symptoms. It is also about trying to get people to care or understand when your symptoms are 100% subjective and disbelieved by almost all the professionals you see.

This article is my personal account of living with Visual Snow Syndrome. It is split into three sections: When I realised something was wrong, Trying to get help, and Living with it.


When I realised something was wrong:

Everything began when I looked at the carpet one day and there were lots of black dots dancing all over it, like the static on an old TV screen. It was a bit strange, but I didn’t think too much of it at the time.

But it didn’t go away. Even weeks later, every time I looked at the carpet, I would see these dots.

Then when I looked at the walls, the dots were there too, but in pink and green. I began to notice vague bands of shadow all over the walls. It looked like there were grubby, grey, rectangular patches all over them.

Again, I carried on without giving much thought to it.

It was when I was watching the darts on TV a few months later, that I realised something was definitely not right.

When I looked at the dartboard on the TV and then I looked away, I could still see it in front of my eyes. I would look at the TV and then look at the wall next to it, and there would be a ghostly image of the dartboard for about 10 seconds, before it slowly faded away.

10 seconds sounds quick, but when you think that your vision is normally instant, as you look from one thing to another, 10 seconds is a long time for an object to remain.

The more I noticed it happening, the more it bugged me. It happened with other things on the TV, too. When I watched the news and looked away, and I could still see the newsreader and their desk in front of my eyes.

It wasn’t an exact image, with colour, but an inverted, negative image in black and white, like this:

The TV became more and more difficult to look at, and I avoided watching it. But it wasn’t just the TV that was causing the images. When I looked at pictures on the wall, or pieces of furniture, they’d still be there when I looked away.

I began to notice mini flashes of light going off in front of my eyes, like those you get if you stare at a naked lightbulb and look away. I was feeling dazzled just from looking at a lightly coloured wall, or walking into a room with a window, even when it was not sunny. The TV became unbearable.

My eyes had become really sensitive to light, and I had to wear sunglasses whenever I went outside, even when it was cloudy.

If I got up in the night, the bright spots seemed to crowd in on me and block my view in darkness, and when I was in a brightly lit room, I could clearly see what looked dark blobs and lines right in front of my eyes, and they moved around as I moved my eyes around.

When I sat in my living room in the evenings with my partner and my cat, at times it became hard to make out the features of their faces in the dim lamp-light.

All these things were beginning to get uncomfortable, upsetting, and disturbing.

As most people do, I began searching online for my symptoms, to see if I could understand more about what was happening. I think I probably searched for ‘fuzzy dots in front of eyes’ or something like that, and I ended up coming across something called Visual Snow Syndrome.


These are the main symptoms of Visual Snow Syndrome:

  • Moving dots over your entire field of vision, like snow or static
  • Bright flashes of light or colour
  • Small objects appearing to float in front of your eyes
  • Being sensitive to light (known as photophobia)
  • Images of objects remaining, even after the object has left your field of vision (known as palinopsia)
  • Shadow images of floaters, that move as you move your eyes
  • Starbursts around lights, such as car headlights

I was immediately sure that this was what I had: I could relate to all of it.

I discovered that the images that stayed when I looked away were something called palinopsia.

The blobs in front of my eyes that obscured my view were things called floaters.

I was glad to find a name for the symptoms I was experiencing, and that I was not the only one reporting them, but I was dismayed to see it was a condition that was not yet fully acknowledged by many medical professionals.

I read that there were doctors who thought it could be linked to migraine. Although I did get these, the eye symptoms were there all of the time, not just when I had a migraine.

From what I read, it seemed to be some sort of neurological disorder, but other than a few doctors that had showed an interest, it was largely unrecognised.

I had so many questions. I wondered in particular what had caused this to happen to me now.

I was also afraid that there might be something physically wrong with my eyes, and that my eyesight was deteriorating in some way. I knew I needed to get my eyes checked out.


Trying to get help

The first thing I did was see an ophthalmologist at my local Specsavers, and I paid to have as many tests done as she felt were necessary. I was continuously blinded by the lights she was shining in my eyes. The whole experience was disorienting and verging on painful, and I was embarrassed about coming across as a high maintenance customer, who had to keep stopping and waiting for their sight to recover.

The ophthalmologist was great, though. She told me that she could find nothing physically wrong with my eyes, which was a relief. She could see that there were some floaters there, but she said that was quite normal for someone who was approaching middle age, like me.

She went away to speak to her boss, and then came back and told me that they thought it was probably Visual Snow Syndrome. I had not mentioned it to her, because I hadn’t wanted to affect her opinion, so it was extremely validating thing to hear her say it. She said she would write a letter to my GP, asking her to review my medications in case anything could help.

I was hoping I might be referred to a neurologist. I had seen one when I was diagnosed with fibromyalgia, only the year before. I was wondering if this was perhaps linked, especially as it was all coming after I had had a serious, long period of mental distress.

Unfortunately, I came up against some resistance when I finally spoke to my GP.

After I pressed the issue with her again, my GP said it might be best to refer me to the mental health team, which I had only just been discharged from.

I tried to explain that I didn’t think it was connected, but she still made the referral. I had no choice but to back down and just go through the motions, so we could rule out mental health as a cause, in a process of elimination.

I waited about four months for my referral to go through and during that time I went back to my doctor yet again, because my eye symptoms were beginning to really upset me.

I had told a couple of my friends about what had been going on, they were quite shocked at what I was having to deal with. They encouraged me to go back to my GP and demand more firmly to see a neurologist. I did exactly that, but I was denied again. She said that there was like a psychological element to all this. Once again, I gave in and decided to just go with that idea and see it through.

Around this time, I had also been having increasingly severe dissociative episodes, which would occur when I became overwhelmed with emotion. I would get a sudden need to lie down, and my body would go numb. It felt as if my mind were separating from my body and floating away. It wasn’t nice at all.

These episodes became a more of a priority than what was going on with my eyes. When I was finally allocated a psychologist, she suggested we focus on them instead. It was fair enough, as the dissociation was by then causing the most disruption in my life at the time.

I was allocated the same care co-ordinator I’d previously had for about 5 years. I told her about my issues with the visual snow. I mentioned that it was quite a rare condition that doctors did not know much about (big mistake!). On hearing that, she instantly dismissed it.

She told me that she thought it was to do with stress. I didn’t feel at all stressed, and I didn’t agree, but once again I decided to just go with what the professionals were telling me. There wasn’t much else I could do.

Even if you know in your heart that the professionals are wrong, you often have to go along with their version of things, for as long as it takes to finally disprove it.

After a few sessions with my psychologist, I reminded her about my eye issues again. She said that she thought it was likely happening along with the dissociative episodes. I told her that the symptoms didn’t tie in with the other episodic dissociative symptoms, because they were there all the time.

A few sessions later, she once again attributed my eye symptoms to the dissociative episodes. Frustrated at having to correct her again, I said extremely firmly:

“They are there…” (deep breath) …”ALLLL THE TIIIME!!”

I felt rude, but it worked because she did listen, and she finally acknowledged that perhaps it was due to something unconnected after all.

I felt glad that she was finally listening to me, but what actually happened was that the eye symptoms were completely swept under the carpet – lost in amongst a number of other more pressing issues.

I am still having psychology to help with the dissociation, though it has been slow progress due to the lockdowns. It has helped quite a bit already, though. I still dissociate, but nowhere near as bad.

Unfortunately, my eye symptoms have not improved at all. They have been the same for well over a year now.

Although it is slow progress with the mental health team, I’m hoping that once I get the dissociation sorted out, we may be able to come back to the eye issue. Maybe they will listen to me then and we can look at other non-psychological factors? (I’m not holding my breath for a magic cure though, obviously.)

I do think that if you have had a lot of contact with mental health services, everything you experience gets attributed to your mental health, especially things that are harder for medical professionals to understand or solve easily.

In the meantime, I have no choice but to get on and live with it.


Living with it:

The walls are still covered with moving pink, green or black dots. Everything lightly coloured looks permanently dirty and cobwebby, and I’m dazzled and disoriented as I go about my day.

It is like I’m looking through mist or a smudgy, dirty window all of the time, and I often need to frown or squint to see detail. I’ve started wearing glasses when I read, use the computer, or watch TV, and although they sharpen up a little of the fuzziness, they don’t do anything to help with the visual snow symptoms.

A lot of the time I try not to dwell on it, because thinking about it too much can make me feel hopeless, trapped, and overwhelmed. Writing this has been difficult, because focusing on it makes me hyper-aware of how much it affects me, and it is a little depressing.

Lying in bed at night is probably the most difficult time of day for me, because when I look around the dimmed or dark room, I feel surrounded by moving swirls of dots, shadows, streaks, and shapes. The tiredness at the end of the day makes it feel all the more exhausting.

The most distressed I have felt through all of this was the moment I realised that the dots, shapes, and lights did not go away when I closed my eyes. Lying in the dark in bed, I realised there was no escape. I couldn’t get away from it, ever.

I felt suffocated and terrified beyond words, and I knew that there was nothing that anyone could do to help me, including myself.  I had to get a grip on myself quickly: being that terrified made me feel like I really could lose my mind.

It is near impossible to truly convey what it is like to experience this every waking moment of the day.

I sometimes describe the symptoms to people as ‘tinnitus of the eyes’, in that it is a constant ‘noise’ in the background that you can’t turn off. At least with tinnitus, however, you can put on some white noise or music to block it out.  There is nothing like that for my eyes.


In the absence of medical professionals’ input, I have my own theory about why I have developed Visual Snow Syndrome. It began not long after a period of severe stress and trauma, which I experienced over an extended period of time.

I believe that my neurological system became so painfully stressed, that I developed fibromyalgia, visual snow syndrome, and tinnitus, all around the same time.

The common denominator for all these things is that they are neurological.

Fibromyalgia is a neurological condition that was not acknowledged for quite some time by the medical profession. There is still not consensus on why it develops, but it often occurs after someone has experienced mental ill-health or a traumatic experience.

Your neurological system works overtime and tells your brain that you are in pain when you aren’t. I’m not an expert, but my theory is that, in the same way, my neurological system is working overtime when it comes to the input from my senses.

My sight is altered, because the signals carried by the nerves between my eyes and my brain are not working properly and going off in ways they shouldn’t, and the same is happening with my hearing, causing the tinnitus.

The hunches or theories of patients and sufferers rarely hold much weight up against the opinions of medical professionals.

Although I have had Visual Snow Syndrome diagnosed by an optometrist, I continue to remain in limbo as no other health professionals will acknowledge it.

I continue to live without any support in terms of how to cope, but I do cope.

I hope that one day more will be understood about this condition so people like myself will finally be believed, validated, and given more support.


8 ways long-term trauma can affect someone physically

Experiencing trauma activates our stress response as our brains and bodies gear up to deal with threats. If you are exposed to severe stress and trauma that goes on over a long period of time, your body and brain will constantly be reacting to threats, and will actually begin to change in order to be able to cope. Over time, your systems become fatigued and physical effects begin to develop.

Examples of situations that can cause this include growing up in a stressful or abusive environment, being in an abusive relationship, having a long-term mental illness or disorder that means you get stuck cycles of trauma (such as ‘BPD’), sleeping rough and being homeless, working in the sex industry, and being detained for extended periods of time.

I would like to demonstrate this by sharing 8 ways I was personally impacted by experiences of long-term trauma.

All of these symptoms began to occur about a year after a serious mental health crisis, which was just one in a series of traumatic experiences I have had in my life.

Although I had begun to feel much better mentally a year or so after this, my body and physiology continued to remain in a stressed and traumatised state, and I developed the following:


1. Fibromyalgia

I was diagnosed with fibromyalgia by a neurologist after I began to experience chronic pain all over my body and fatigue. I found it hard to move around or do daily chores without being in a lot of pain. I was exhausted all the time.


What is fibromyalgia?

Fibromyalgia is a neurological condition that is mostly experienced through chronic pain all-over body pain and fatigue, but can also include cognitive (thinking) problems, sleeping issues, migraines, and other symptoms.

Although doctors aren’t completely sure why it happens, they have found that it often seems to be triggered by a physically or emotionally traumatic event. It involves changes with how the nervous system processes pain.


2. Dissociative ‘Attacks’

About a year after being diagnosed with fibromyalgia, I began to have dissociative episodes that would happen in response to certain environmental triggers.

Whilst I had experienced various forms of dissociation on and off throughout my life, it had always been more of a mental experience. These new episodes affected me physically.

My body would become rigid and I would be unable to walk properly, move, or speak, for hours at a time. It felt like my brain had completely disconnected from my body and got stuck, and I was waiting for it to come back again.

Even after they dissipated, I would feel exhausted for days afterwards.


What is dissociation?

Dissociation is when you experience a feeling of detachment and disconnection from either your own body or your surroundings. It is something most people experience in mild form, such as when you are daydreaming or going into ‘autopilot’ when driving a car. It becomes a problem when it is going on for longer periods, seriously affects your perception, and when it makes you feel distressed – all of which can affect your daily functioning.


3. Chest pain and rigidity

When I found something upsetting or emotional, I very quickly got really bad chest and upper back pain. It felt like I had a rock inside me trying to get out. The ache and the tension was so severe that I’d have to lie down and take painkillers. It could last for days.

It was a very specific pain and rigidity that only seemed to happen when I felt strong emotions, such as hurt, anger, and sadness. I would often get the rigidity in my face and jaw too, making it hard to smile, be expressive, or even talk properly, for days.

4. Cognitive Issues

My memory increasingly got worse, from me constantly forgetting where I’d put things or what I was doing, to causing stranger and more worrying things to happen. These included finding things done around the house that I didn’t remember doing, like hot cups of coffee sitting on the kitchen counter when it was only me in the house, or fresh washing hung up in my wardrobe!

I had difficulty concentrating, being able to understand and retain verbal information, and being able to respond to people verbally in a way that was timely or made sense. This could vary according to the circumstances, such as where I was and who I was with, and also on my levels of anxiety or emotion, but was one of the most difficult things I had to deal with.

I actually wrote about how cognitive issues like this can affect your ability to have a conversation. You can read it here: 5 reasons why having a conversation is so tricky when you have anxiety

These issues are one reason why I like writing so much – the written word is so much easier to manage!

5. Visual Snow Syndrome

This is an interesting one, and apparently also controversial because most of the professionals I see think it is a transient stress reaction or hallucinations.

I have had it diagnosed by an ophthalmologist and I’m pretty convinced it is not due to transient stress as the symptoms are there all of the time, from the moment I wake up until I go to sleep. They are even there when I have my eyes closed, and it has been that way for over a year and a half now.

It is a condition that not much is currently known about, and after further research I have found that most people have trouble getting it acknowledged by professionals.

Visual Snow Syndrome involves changes in your vision, such as seeing static everywhere, seeing traces when you look away from objects (palinopsia), light sensitivity, night blindness, and flashing colours and lights.

It is not a problem with the eye. The issue is thought to be how the brain is interpreting the information and the messages coming from the eye.

I call it ‘tinnitus of the eye’ because that is one of the best ways I’ve been able to explain it to people so they understand.

If you are interested in finding out more, read my other post: What it is like to live with Visual Snow Syndrome.

6. Tinnitus

About the same time that the visual snow started, I also began to get tinnitus, which for me is a constant high-pitched ringing in my ears.

Tinnitus is quite common and is the perception of sound when there is no actual sound. The exact cause of tinnitus is not known, though it is believed that it has to do with changes in the signals going to the brain via the hearing nerves.

It can get overwhelming, especially if I am already feeling stressed, or if I am in a very quiet room. I tend to listen to white noise when I’m trying to get to sleep, or if I want to relax and read a book, so the noise doesn’t disturb me as much.

7. Migraines

I have always been a headachy person, but along with the fibromyalgia I began to experience really bad ones, which then turned into migraines. I was getting them nearly every other day, though with medication I have managed to get them to a point where they only happen once or twice a month at most.

Migraines are thought to be a neurological condition, and I have found them to cause severe head pain, light and noise sensitivity, nausea, and issues with speaking and seeing properly.

8. Random physiological reactions

Although I have suffered from anxiety for over 20 years, it tended to be more about social situations, crowds, or feeling embarrassed and awkward in front of people.

These new ‘random’ anxiety attacks began to happen when there is no obvious trigger. I would be doing something that doesn’t normally make me feel anxious, like having a shower, or eating breakfast, and not thinking about anything bad at the time.

I got hit with waves of anxiety out of nowhere. I wouldn’t experience it as anxious thought, but in terms of my body and my physiology. My heart would thump, I’d feel like I wasn’t getting enough oxygen, and I’d have to take deeper breaths and sit down. I’d feel sick and afraid and find it hard to think properly. It usually lasted hours, sometimes days, so it wasn’t like a ‘simple’ panic attack.


These are 8 things I personally experienced, though I’m sure there are others I have not included that other people will experience too.

I’m very glad to say, that other than the fibromyalgia, visual snow and tinnitus, I no longer suffer with these issues on a daily basis. It is possible to over come physical issues that have been caused by trauma. I did it by looking after myself and my working with a psychologist to overcome the emotional traumas. When your mind is feeling better, your body begins to get better too.


Despite my mental health radically improving after my crisis, my body continued to suffer. I believe this is because I did not do any work on what had caused my trauma/s. Once I did start addressing this, with the help of a psychologist, I improved radically.

I think this shows how important it is that trauma is recognised, and that people be given the opportunity to work through it with professionals in a safe way, in addition to learning coping mechanisms and healthier ways of living.

I think going deeper into what had happened can often make the most lasting difference to someone’s quality of life.

I believe that most people with a serious mental health condition, especially those who experience repeated crises, and those who have been detained, will most likely have been affected by trauma, whether that was via an earlier stressor that brought them to services, or the result of repeated and long-term interactions with services.


10 ways you might feel LONG AFTER being sectioned under the Mental Health Act

Being detained under a section of the Mental Health Act is an experience that is difficult and stressful.

It involves being removed from familiar surroundings, against your will, and being placed on a mental health ward for the safety of yourself or others.

Not only can it cause a lot of stress at the time, but it can also have profound and lasting effects on a person, which may continue to have an impact long into the future.

This is something people don’t tend to talk about, and it can be difficult to know where to turn for help if you have been affected.


Although different people may feel differently about this experience, here are 10 ways you might feel.  Everything I have written here is based on personal experience.


1. Ashamed or embarrassed

No one should have to feel ashamed or embarrassed by needing urgent mental health care, however due to continuing stigma around serious mental health issues, this is a common experience for many people.

Those feelings could be about things you said or did that were out of character for you. Perhaps you feel that you let yourself or other people down in some way. This often goes along with feelings of guilt.

Maybe people around you who aren’t your closest loved ones, such as your neighbours or work colleagues, know that you were sectioned, and it makes you feel embarrassed, and you worry about what they think of you. This can cause you to lose self-esteem and confidence, and not want to be around those people.

2. Guilty or sorry

Feeling ashamed is often tangled up with feelings of guilt. You may wonder why you acted a certain way, or why you didn’t do enough to stop it happening.

Perhaps you did or said things that you did not mean because you were so unwell, and now you feel bad about it. Maybe you caused other people to be distressed or upset, or even broke the law, because you were not your usual self, and you are carrying feelings of regret.

You might even want to say sorry to certain people, but you don’t have the opportunity, or you don’t know how.

3. Alone

The experience of being sectioned is one that not a lot of people go through and it is also deeply personal. It is not something that is easy to talk about with other people.

Your loved ones may be too close to the situation for you to want to talk to them, or perhaps you feel that they won’t understand because they have not been in the situation themselves.

Because your experiences involve services or professionals, you might not feel you can talk to them about this, or you may feel like the last thing you want is to be involved with mental health services again.

4. Like you don’t belong

You might find you feel differently around other people now. You might feel that you don’t fit in anymore because you have been through something that has changed you so much that you can no longer relate to others in the same way.

You may prefer to be alone and away from other people because of how you feel.

5. Angry

You might still feel angry about what happened, and even harbour resentment about what you experienced.

This could be due to feeling let down by loved ones or people you thought you could trust. It could cause you to avoid these people.

It could be due to what happened whilst you were sectioned and how professionals or services treated you. It might lead to you not wanting to engage with services in the future.

6. Afraid

You may find that bad memories of your experience come back to you, even years later.

You might be triggered by something on the TV, such as programmes about mental illness or movies where people are trapped, held against their will, or coerced into doing things they don’t want to.

You might get flashbacks or nightmares about things that happened, or physical and physiological reactions when you are reminded, such as panic attacks or dissociation.

7. Numb

You might not feel anything at all.

Sometimes when things are too much to bear, your brain may try to cope by shutting off in some ways, and that can make you feel numb.

You might be unable to properly feel happy or sad about anything. You might feel indifferent about everything and find it hard to connect with other people because of it.

You may prefer not to be around other people and might lose interest in a lot of things you’d usually enjoy.

8. Confused

Things may have happened during your experience that still don’t make sense to you. Things may have been said or done by people around you that you don’t really understand.

Wondering ‘why?’, and not having any opportunity to ask or find out, can lead to thoughts, images, and questions that continually bug you. That can make you feel uncomfortable, confused, and make it harder to come to terms with your experiences.

9. Helpless

Being restricted and having your freedom taken away can make you feel helpless, even after you have your liberty back again.

It is very hard to forget that feeling of helplessness once you have felt it.

You might not have the mental strength afterwards to even think about your experiences, let alone talk about them, and prefer to push them to the back of your mind.

Unfortunately, intense feelings and emotions don’t just go away, and may continue to affect you deep inside.

10. Any way

Everyone can have different experiences whilst they are sectioned, due to many different factors, and that will have a bearing on the way you feel afterwards. Everyone is different too, and people deal with things in different ways.

It doesn’t matter if how you feel is differently from other people who have had this experience. There is no one way you should or should not be feeling.  

You might be feeling all or none of these things, or some that I haven’t even mentioned.

However you are feeling, it is ok to feel like that, even after a long time.


Even if you went through the experience of being sectioned some time ago, you have been through something very personal and difficult, and it is okay if you are still not over it.

I want to raise awareness of the fact that there is a need for specific support for people who have been sectioned, on top of the support you might get for your mental health condition.

Being held against your will is an experience that can affect you very deeply, and it is important that is recognised.

It is important that mental health treatment does not add to the trauma or distress that people are already experiencing, and that they don’t continue to carry that burden into the future.


You might also like to read 8 ways you might feel when you’ve been sectioned under the Mental Health Act, which looks at how you might feel during your time of being sectioned and detained in hospital.