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.


9 key principles working in customer service taught me about supporting people in crisis

Customer service is often viewed as menial, low-skilled work, but there is an art to doing it well.

I have had a number of customer service jobs, including working for various auto breakdown services, and a private pathology lab. I was often on the phone to distraught people: perhaps they’d had a smash on the M25, and they had 3 terrified children with them, or they were waiting for a breast cancer test result that was running late and were petrified the delay was due to bad news.

Those calls were much trickier than the average; however, through them I learned some fundamental principles that have continued to help me help others, including work with prisoners and rough sleepers, for many years since.

Whether you are dealing with a vulnerable person in crisis or a customer on the phone, they come in handy.

Here are 9 that I see as the most important:


1. What people define as a crisis is relative

A crisis can be an enduring situation where your whole world is literally falling apart, or it can be a sudden, short-lived incident that causes acute stress but is able to be resolved within a day, or even a few hours.

What one person experiences as a crisis may not be the same as another.

Timing is also a consideration – someone might normally cope well with a situation, but they might not have the emotional resources to cope with it other times.

All reasons for distress are valid and relevant because of the meaning they have for the person experiencing them.

It is best to avoid judging someone coming to you in crisis, even if their issue does not resonate with you, or you see it as minor or silly in comparison to others.

People need to feel like their problems are not just valid, but that the extent and gravity of their problems as they see them is acknowledged.

People, understandably, need to feel like they matter, and that their problems also matter.

2. You can make a big difference in just one interaction

When someone is already stressed out, whether it is because their car is damaged, or they’ve dropped their phone down the loo, or they’ve found themselves suddenly homeless, the last thing they need is a difficult interaction when they reach out for help. This only makes people feel more stressed, angry, and frustrated with their situation.

We all know what a relief it can be to have a problem sorted out speedily and adeptly. The call handler is friendly, empathetic, and competent, immediately putting you at ease. They give you opportunities to ask questions, explain what you’re not sure of, and tell you what they will do to help. You come off the phone feeling lighter and less worried about your problem, now it is in someone else’s capable hands. Your stress levels decrease immediately.

Most of us have had experiences at both ends of this spectrum and can remember how differently we felt after each of them.

You can radically affect how stressed someone feels in quite a short space of time, depending on how you approach their issues and how you treat them.

Make the most of those opportunities.

Lessen their burden, instead of adding to it.

3. Anger is fear and a need to be heard

When someone in crisis appears angry, it is often fear in disguise.

Understanding this is key to being able to help someone whose stress comes across as anger.

If someone seems frustrated or angry, I stop talking and listen. I let them do all the talking.

After they get their initial rush of frustration out, most people begin to relax, especially if they aren’t coming up against resistance from you, and it is obvious that you are listening.

A calm, attentive reaction often takes people by surprise. They’ve most likely been expecting a battle, and it doesn’t happen.

You will notice their relief emerging as they begin to slow down, take some breaths & eventually stop talking. Sometimes they even start to feel a bit embarrassed at their outburst, and they apologise. So many times, I have heard the words:

“Sorry, I know it’s not your fault – I’m just so worried about it all and I don’t know what to do.”

People often just need to be heard and have their fears acknowledged. They need to be able to share the impact a situation is having upon them and have someone be a witness to that. They need to feel the emotions they are having are externally valid.

Anger is rarely about you as the helper: it is more about the person’s situation, and how afraid and out of control they feel because of it.

(N.B. I am not saying anyone should have to tolerate aggression. It is not okay for someone to get abusive. I have found that active listening, followed by focusing on joint problem-solving, is very effective in deescalating anger. If it isn’t working, it is important to be assertive and possibly end the interaction if they are being aggressive towards you.)

4. People need allies

Someone in crisis who is reaching out for help longs to feel that they aren’t alone anymore.

Being distressed and alone is something no one should have to experience.

Knowing that someone somewhere is helping to shoulder the weight of their problem (especially someone who has access to resources to help them fix it) can make a huge difference to how powerless someone feels.

It doesn’t mean that you should do all the work for them, or that you should step outside professional boundaries. Just ensuring someone has a positive interaction with you will help them feel less alone.

Even if there’s little you are able to do, sometimes just listening and acknowledging is the best way to be an ally.

5. Be reliable

This is one of the simplest, but also most powerful, of these principles.

I cannot stress enough how important it is to be reliable when you are working with someone in crisis.

It is likely that you represent a glimmer of hope for that person, so don’t just throw that away.

If you say you’ll do something, you must do it. If you forget easily, make a note, or put it in your calendar.

If you’re not able to do what you said you would, let them know. Get in touch and tell them that you’ll need a couple more days to find something out, or that you’re going to be trying something else instead.

Not doing something when you said you would (especially when someone is relying on you to help), shows that person that they don’t really matter – even if that is not your intention.

Don’t just leave someone in limbo, wondering what’s happening – they will most likely be worrying. Call them. Get in touch and let them know.

It might feel easy to get lazy about these details, but don’t let that happen.

If you can’t commit to things, it is probably best not to make those commitments in the first place.

6. Be honest

Don’t take the easy road and tell people what they want to hear, just to make your life easier. Honesty is everything – even if it means delivering less than satisfactory news.

People appreciate being told the truth.

Most people prefer news that isn’t the best to lies given only to placate. This is otherwise known as ‘fobbing someone off’, and most of us know how that can feel.

7. Move people forward

A manager and trainer at Citizens’ Advice taught me this:

You may not be able to solve someone’s problems in one go, but you should aim to move them on a step further than when they walked in.

Openness, warmth, and a listening ear may be helpful in the moment, but you should also think about what you could give the person that they can take away with them.

It might be something tangible such as an information leaflet or a telephone number to call, but equally important are hope, the relief of a problem shared, the courage that comes from having an ally, or even some restored faith in humanity.

We can all think of times when we’ve walked away from an interaction feeling more hopeful, whether it was from a medical appointment or a call to the insurance company.

People feel better when they can see where they are going, or what steps to take next. It is like finally receiving a map to somewhere when you’ve been completely lost.

8. Everyone can benefit

We could probably all do with more customer service in our lives! You don’t have to be in an official ‘helper’ position.

I use these principles in my daily life to support others, even my partner, my parents, and my friends. I regularly ask myself:

“What can I do to help this person? How can we sort this situation out? Will letting them talk while I listen help? How can I help take them from feeling stressed to feeling a bit better about things?”

9. Be human

I’m not suggesting by using customer service principles we should all become call-centre robots. Not at all. Good customer service is warm, supportive, and validating. Everyone is treated as an individual equally as important as the last, and everyone’s plight is as valid as the next.

I was once assessed over on the phone by a mental health worker who sounded like she was reading questions from a script. I later gave feedback about this to a manager, and was told, ‘yes, that’s because she was reading from a script’.

My point was missed completely: I knew she was. The point was that she was not in any way bothering to disguise it. That felt impersonal and hurtful when I was already feeling vulnerable and being asked such sensitive questions. I needed to speak to a human, not a robot.

Nurse, doctor, receptionist, call handler, or friend: any of us can make a difference to other people’s distress by thinking about how we interact with them, and what effect it might have on them.

It doesn’t matter who you are or what position you hold.

Often it is just about being a human being talking to another human being.

The simplest things are often the most powerful.


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.


8 ways you might feel when you’ve been sectioned under the Mental Health Act

Being detained under the Mental Health Act and confined to a psychiatric ward is something that is supposed to be done in your best interests, but it most likely won’t feel like that at the time.

Of course, everyone will feel differently, but here are 8 ways you might feel.


1. Powerless

Being free to mostly do as we choose is vital for us as human beings in today’s society. Being told that you cannot leave somewhere, or go out for a walk to stretch your legs, or being forced to do things and go places you do not want to, can have a profound and lasting effect on how you feel about yourself and about the world.

2. Angry

One of the most natural emotions to feel when you are no longer in control of what is happening to you is anger. You might feel angry with the professionals who assessed you, because you don’t agree with their decision. You might feel angry with your family if you feel that this has happened because of them. You might be angry because you feel you are not being listened to, or because you feel the staff are against you.

There are many things you might feel angry about, and often other emotions, such as fear, can feel like anger.

Sometimes anger can lead to you lashing out and becoming aggressive, which is fairly understandable if you are stuck in such a confined and powerless situation. Aggression might not necessarily be interpreted in this way, unfortunately, and may lead to further restrictive interventions or negative staff attitudes towards you, making you more angry and creating a cycle.

3. Afraid

You may not even be sure what is happening, know where you are, or know who these people are who are stopping you from doing what you want to do. You might be scared of the other patients, or the staff, or what you think is going on.

The way you feel and act when you are afraid can often feel and look the same as anger.

4. Ashamed

No one should have to feel ashamed if their health has led to them needing urgent mental health treatment or support, but stigma in society around serious mental health problems continues, so it is not surprising if you do feel this way.

Your feelings might be about how you perceive yourself, and also about what other people might think about you.

5. Alone

You may only be able to see or speak to your loved ones at certain times or for short periods. You might not get along with any of the other patients, or be interested in them, so you spend a lot of time on your own.

If you are moved to a hospital out of the area, it may be impossible for you to have anyone visit you, and you may feel very far from anything and anyone familiar.

You might not even want anyone to visit or call if you are feeling ashamed, or if you are angry with them seemingly playing a part in your current situation.

You can still feel lonely, even if you have purposely decided that you don’t want to see or speak to anyone.

6. Irritated

When you are feeling irritable, you can get annoyed or stressed out at things very easily. This can happen for many reasons, such as in response to outside stress, or because you feel bored and fed up.

Psychiatric wards are often not calm places. They can be noisy and uncomfortable, and also boring if there are few activities, or if you don’t feel like joining in.

Other patients can be noisy or disruptive because they aren’t very well. Being stuck in a fairly small area, with people you would not normally choose to be with, can lead to you feeling irritable and agitated.

7. Worried

You may have children, a partner, or pets, and be worried about how you being away from them is affecting them. You might be worried about how being sectioned will affect your life in terms of your job or your reputation.

8. Trapped

If you are an informal patient on a mental health patient, you will often be allowed to come and go as you please throughout the day.

As a patient on a section, however, you cannot go out for leave unless it is legally agreed to and signed off by a psychiatrist. This is called section 17 leave. If the psychiatrist is not in over the weekend to do it, or if they decide you won’t be allowed it yet, then you cannot leave the unit.

This means spending all your time in just a few spaces – a bedroom, hallway, lounge area, dining room, a small yard, maybe a quiet room, and occasionally activity rooms – sometimes for months on end.

Feeling trapped can make you feel irritable, stressed, and angry, and more likely to feel aggressive towards others.

It can also have lasting effects on you mentally because of the stress it can cause.


These feelings are all very natural responses to the experience of being detained under a section of the Mental Health Act.

Although I have set them out individually here, these emotions do not happen separately, but are all entwined with each other. Feeling one will often make you also feel many of the others.

You may not even be able to tell which of them you are feeling because they all get so easily tangled and jumbled up together.

Your stress levels can affect the way you act and how you come across, which in turn might affect the way others respond to you and the care that you receive.

All of this can lead to an extremely stressful experience, the effects of which you might carry with you sometime into the future.

It is quite normal to feel any of these emotions, or any others, when you are in this situation.


If you are currently on a section on a mental health ward of any kind, it is highly likely that you are legally entitled to an advocate.

This is someone impartial, who is not part of the staff who are caring you, that will listen to you and support you to be able to express your views, and who will help you stand up for your rights.

If you would like to speak to an advocate, let a member of staff on your ward know. They will be able to organise that for you.

Alternatively, you can find one and contact them directly by searching online.


Here are some great UK charities with resources to get you started:

Mind

Rethink

Voiceability

POhWER


You might also like to read 10 ways you might feel LONG AFTER being sectioned under the Mental Health Act, which looks at how the experience of being sectioned can still affect you some time afterwards.