Questions From Readers

In January I received some questions from a reader, prompted by a post I had written in November 2006. The post was entitled “Blip”, and at that time Mr Man’s medication had been changed, causing a temporary fluctuation in his symptoms. This had led to him believing that many of our friends were spies, and that even his Psychiatrist was “in on it”. You can read the full post here. Below is a portion of my correspondence with the reader, for the benefit of those who may be in a similar situation.

"How do you handle it when Mr Man says things like “she’s in on it”? And how do you handle living with someone who always believes that people are spies? I have fears about when my hubby comes home – how am I going to feel with him always thinking that people are after him? I have a hard time when he thinks I am against him. I don't know how I will react if he is going to say stuff like that throughout the years."

I understand your fears at present. When I first realised that Mr Man was suffering from Schizophrenia I didn't think he would be well ever again. But in time, and usually with medication, things do get better. It can seem slow at times, but then other times you look back and you suddenly realise how far he has come. The key is not to compare to what he was like when he was well, but to compare to what he was like at his worst.

At the time of writing this “blip” post, I didn't actually challenge Mr Mans beliefs too strongly. I think I said something like "Do you remember telling me that you realise these beliefs are part of an illness? When your meds get into your system you won't feel like this anymore" But he didn't remember it, and it seemed to confuse him, so I chose not to challenge it anymore, only reassure him and distract him from those thoughts as much as I could. Dwelling on them definitely doesn't help.

I was aware that I would have to keep a closer eye on him and I made sure he took his medication. Apart from that I tried to carry on as normal. It really did turn out to be just a blip and he didn't need to see his doctor after all. If the symptoms had persisted or had got much worse I would obviously have had to contact his doctor against his will.

Mr Man isn't like this all the time though. Once a person is relatively stable on medication the fluctuations in symptoms aren't usually severe. Also, you do learn to adjust and accept certain things in time.

"His social worker said that if I took over his care, not only will I be the wife but I will have to be the one responsible for him taking his medication, and if he doesn't then I will be the one forcing him into the hospital. So it could strain our marriage. Do you have any experience with this?"

Yes, I have had to make sure that Mr Man takes his medication, and I have also had to have him detained under a section of the Mental Health Act before. Even now, I get Mr Mans medication ready for him, but that's mostly because he would probably forget to take them otherwise! I don't usually have to watch him take them these days, but if he becomes unwell, like in this "blip" post, then I have to watch him take them to make sure he has had them. It's when he starts to doubt that he is ill that he is likely to skip medication, but most of the time he understands that he is ill and needs the tablets. They call this "insight".

We have had problems with this in the past, but communication was the key for us. I always tried to give Mr Man lots of reassurance that I loved him. I knew he didn't believe that he needed the medication but I had to ask him to trust me and I would try to reassure him that I would never make him take anything that would harm him. At times he only took the tablets for me, but at least he took them.

"Trust Me" by Philippa King

It was painful sometimes when I sensed that he was suspicious of me, but I had to remind myself that it was temporary and that as soon as he started to improve he would understand.

For a while it wasn't uncommon for him to ask what each tablet was called and what it was for. Understanding his fear helped me to be patient with him and explain about each medication time and time again. He would especially ask these questions if the chemist had used a different manufacturer that month and the packaging was different or the tablet was a different colour or shape. They really should think of these things shouldn't they?

The day he was admitted under a section of the Mental Health Act was a strange day. Although he had refused to go to the Doctors with me, when the Doctor came to our home he didn't become argumentative at all. He refused to go into hospital voluntarily, but he seemed to just accept the situation when they enforced the section. He didn't seem angry at me either. This was his third admission, and each hospital stay had been a lengthy one. I suppose he knew by that point that I was going to support him as much as I could, just as I had done on both previous occasions. It's different for everyone though.

Hopefully it will never come to that point with you and your husband. It really depends on how much insight he manages to gain through his medication. One thing I would say though (and I'm not suggesting that you would do this) is never lie about anything, even if you think it will protect him. I have always been completely honest with Mr Man about his medication and everything. When our home was broken into he was still in hospital. It would have been easier to not tell him about it, as he thought the burglars were spies, but I knew if I didn't tell him he would lose trust in me when he eventually found out. Maintaining trust is vital.

Violence and Schizophrenia – Comments from Readers

I would like to thank all those who commented recently on my posts “Violence and Schizophrenia”. Often I find that the comments left by readers are more interesting and informative than the posts I have written! Some of the explanations of what it is like to suffer violent intrusive thoughts were too valuable to leave unread by the majority in the comments section.

“The thoughts are like movies you can't shut off... no matter how horrible it is I can't press stop… I'm forced to "watch" the whole thing until it is done.”
- Minnesnowta

“I've struggled with these thoughts for a long, long time. I thought they made me a horrible person and I have done very silly things to try and erase them from my mind. I could not even write them down for fear that they would become more real.”
– Anonymous

“They cause great distress, and I wonder why my head does this to me? I don’t like swatting wasps, let alone harming a person; it’s just not me at all.”
- Slurry

I also sometimes receive comments which raise very interesting questions and points of view. No doubt these points of view will be shared by others, and so I would like to reply in full in a blog post. I have recently received the following comment from an Anonymous reader, regarding my posts on Violence and Schizophrenia.

“I have been reading your journal with interest and after some time have decided to post a reply to this thread.

On the topic of intrusive thoughts my guess is that we all have these and from time to time they can be elaborate, explicit and violent but a filter or whatever prevents us from taking these fantasies and enacting them in the real world. If this were not close to the mark I fail to understand the attraction that violent films and latterly computer games have for a large proportion of the population. In fact, children may re-enact what they have seen but as play rather than through real aggression.

I am reluctant to continue this post as I believe it will be unpopular with the non sufferers of schizophrenia and those with the illness who read this blog. However my opinion is as valid as anyone else’s and deserves to be considered.

A small percentage of people with serious mental illness are capable of the most appalling violence. I know of no way to differentiate those who will go on to kill and those who will not. I believe that by claiming that there are far worse dangers out there you are bordering on denial. There are many dangers out there, far more people are killed by the sane than the mentally ill but a percentage of schizophrenics will go on to kill.

Even a small percentage is significant, I personally know of no one who has been killed by a seriously mentally ill person. I have however been stabbed over a prolonged period by one and am lucky not to be one of the statistics I feel some would rather ignore.”

Anonymous, thank you for taking the time to respond to my posts “Violence and Schizophrenia”. Firstly I would like to say how sorry I am that you have been a victim of violence over a period of time. As you so rightly point out, your opinion deserves as much consideration as anyone else’s.

You begin your comments by stating:
“On the topic of intrusive thoughts my guess is that we all have these and from time to time they can be elaborate, explicit and violent but a filter or whatever prevents us from taking these fantasies and enacting them in the real world.”

I personally don’t believe that I have ever experienced intrusive thoughts. In rage I have experienced very violent thoughts, but as I endeavoured to explain in my previous post on the subject, intrusive thoughts are unrelated to the person’s emotional state and additionally are “intrusive” – unwanted, unwelcome, distressing, and difficult to be distracted from. Far from being a fantasy, they are more like a waking nightmare for those who experience them, especially as they can be accompanied by visual hallucinations. See the comments above by those who have experienced them.

You continue:
“If this were not close to the mark I fail to understand the attraction that violent films and latterly computer games have for a large proportion of the population.”

This is an interesting point. For Mr Man, the intrusive thoughts and hallucinations that he has endured means that there is rarely a violent scene in films that he finds more distressing than what he has already witnessed. However, this doesn’t mean that he finds violent films entertaining.

For most people who are entertained by such, I suspect that it is more than simply a case of desensitization. Over the years films have not only become increasingly violent, but the violence has been glorified by being acted out by the most popular actors delivering “cool” one liners. In addition, age restrictions have been reduced and the video games often allow the gamer to become the hero of the film. Violence then has become synonymous with many desired traits such as popularity, admiration, and sex appeal, to name but a few, and I feel it is this that has increased its popularity.

Like you, I fail to understand the attraction of such violent “entertainment”, but the result of which for many is an impaired conscience, which I believe you alluded to when you said “a filter or whatever prevents us from taking these fantasies and enacting them”. For some, the filter stops working. Despite suffering from intrusive thoughts, the conscience of a person with mental illness is no more likely to become impaired than anyone else’s. As Mr Ian, a psychiatric nurse for many years, said in the comments section:

“Most people with psychoses harm themselves before other people as they still maintain their moral reasoning that it is wrong to hurt others. Those that do harm others, only do so because they feel they are severely threatened, regard it as the best/only option for their dilemma, or they have a delusional belief that such behaviour is 'ok' (I once nursed a guy who stabbed a horse guardsman in the leg because [he believed] it was an act of mutual bonding and honour that the guardsman would have understood).”

You continue:
“A small percentage of people with serious mental illness are capable of the most appalling violence.”

I agree, just as a percentage of those without mental illness are capable of equally appalling violence.

“I know of no way to differentiate those who will go on to kill and those who will not.”

Again, I agree, just as I have no way of knowing which of those without mental illness will go on to kill and which ones will not.

"On Balance" by Philippa King

“I believe that by claiming that there are far worse dangers out there you are bordering on denial.”

I never claimed that there were far worse dangers, only that a person has as much chance of being killed by a person without mental illness as with. What I do question is whether a person’s mental illness is truly the cause of their violent acts in all cases. In many cases I think it is used as an excuse; on the other hand, for those who clearly were affected by mental illness at the time of committing a violent crime, support was obviously lacking as there are always warning signs before hand. Consider this comment by Mr Ian:

“In regard the myth of the "snap" theory, I agree. It never comes unannounced. It frequently goes unnoticed or unattended though. I have worked with violent mentally disordered offenders for several years now. What you say is true and accurate from my perspective also; that the true cause of the violent act being purely in psychotic reasoning is pretty rare. Often it is increased in probability by prior personality, intellectual or environmental influences; or is more to do with those predisposing/predictive factors and not psychoses at all.”

You continue:
“There are many dangers out there, far more people are killed by the sane than the mentally ill but a percentage of schizophrenics will go on to kill.

Even a small percentage is significant”

I agree that although the percentage of those killed by people with mental illness is small, those victims are not insignificant. However, I think it is unfair for the media to wrongly give the impression that these murders are more frequent than they actually are, or that everyone with a mental illness is violent. Rather than trying to ignore statistics, I am asking people to be balanced in their view of people with mental health problems.

I understand that your experience has not been a good one. You don’t say what your relationship is to the individual who has stabbed you, but I would recommend seeking outside help and advice from a GP or a Community Mental Health Team. If this person is persistently violent towards you he/she should either be arrested or detained in a secure unit under a section of the mental health act.

Thank you again for your comment, and to all who have commented on this subject.

Related Posts: Violence and Schizophrenia - Part One, Violence and Schizophrenia - Part two

Related Posts on Mental Nurse: The Will To Do No Wrong, The Will To Do No Wrong Part 2

Violence and Schizophrenia – Part One

I’ve only ever really skimmed over the symptoms of Schizophrenia in my blog. To be honest, there are so many websites that list the diagnostic criteria for Schizophrenia already, and probably far more accurately and eloquently than I ever could. When you are a sufferer of Schizophrenia though, or care for someone who is a sufferer, you realise that there are other common symptoms which are not listed as part of the diagnostic criteria, but are suffered none the less. One of these symptoms is intrusive thoughts. What do I mean by that?

I don’t mean the compulsive thoughts that Mr Man often struggles with. Compulsive thoughts are similar to what is experienced by a person suffering from Obsessive Compulsive Disorder – an obsessive compulsion to carry out often ritualistic behaviour accompanied by anxiety. For Mr Man these compulsive thoughts present themselves as obsessive counting in his head, and re-arranging things in order. When we had some children’s building bricks in the living room he had compulsive thoughts to build them into a symmetrical shape, dismantle them, and then rebuild them again. Trying to resist this compulsive thought caused him a lot of anxiety until eventually we decided to put the bricks away out of view.

The intrusive thoughts that Mr Man experiences cause him anxiety for very different reasons. These thoughts are very violent in nature, and he describes them as being inserted into his brain as if by an outside source. It is precisely because these thoughts do not reflect his own feelings that they cause him so much anxiety, rather than it being the strain of resisting such thoughts. These violent thoughts are not temporarily accompanied by a surge of anger which could tempt the sufferer into acting upon them; neither are these callous thoughts with no feeling for the victim; rather, they are unwanted thoughts that cause the sufferer a great deal of anxiety as they have no desire to act on them. They are as unwelcome as the frightening hallucinations a Schizophrenia sufferer experiences.

"Intrusive Thoughts" by Philippa King

When Mr Man was at his worst, he had intrusive thoughts of killing me and cutting me up into pieces. He said he also saw himself doing it on a sort of screen in front of him. Was I scared? Not at all. Should I have been? Should I have been afraid of a man who had never raised his voice to me let alone his hand, and who sobbed and shook with grief at the thought of carrying out such atrocities? I never feared that he would ever act on these thoughts. In reality these intrusive thoughts caused him far more anxiety than they ever caused me; my only concern was how traumatic the experience was for him.

As I said though, this is not a symptom I have ever read about. Maybe this is why when Mr Man explained what he was experiencing to the staff in the hospital they didn’t believe him – they actually thought it was an act and that he simply wanted to kill me. He was told that if he killed me he would be held responsible for his actions and he couldn’t “get away with it” by claiming mental illness. My goodness, they must have had some good actors on the ward if they thought this was an act, because I have never seen a man so distraught in my life. Their suggestion that these thoughts were his own desires only distressed him further.

I know another Schizophrenia sufferer who has also experienced very violent intrusive thoughts. She also finds them very distressing. Although describing them in exactly the same way as Mr Man – as being inserted into her brain by an outside source and feeling that they are not her own thoughts – she feared that she was actually a bad person and felt a lot of guilt over it. She never told anyone at the hospital about these thoughts, and no one ever asked her because, I suppose, it is not part of their diagnostic criteria. It would have been helpful for her to know that what she was experiencing was part of her illness though.

I think it’s important to note that although Mr Man has struggled with, and eventually acted on compulsive thoughts and command hallucinations, he has never acted on these unwanted intrusive thoughts.

Does the presence of compulsive and intrusive thoughts mean that people with Schizophrenia are more likely to be violent? Are they “on the edge”, ready to snap at any moment? This will be discussed in the following article.

Related Posts: Violence and Schizophrenia - Part Two, Violence and Schizophrenia - Comments from Readers

The Truth Revealed

Continued from "The First Three Weeks"
End of June 2002

It was a Thursday. A bed had become available for Mr Man on the Acute ward in the Psychiatric hospital. The decision was made to move him from one hospital to the other during the afternoon and a member of staff took him in a taxi. I wasn’t allowed to visit him until the evening during the usual visiting hours. I know this may seem reasonable to most, but for the first time I felt completely excluded from Mr Mans care.

It wasn’t just my own feelings I was concerned about though; Mr Man had relied on my support through every step – we had been inseparable for months leading up to his admission. I had been with Mr Man at every appointment; every team meeting; and I had been with him during the whole admission process when he was first admitted. Now suddenly he was being moved to an unfamiliar building, with different patients, different staff, and different rules, and he had no one for support. He was alone. I was angry about this; an emotion I became very familiar with over the following months. I felt like we were being kept apart like naughty school children.

At least because this was a psychiatric hospital with no need for fancy electrical equipment Mr Man and the other patients were allowed to carry mobile phones, so we were able to keep in regular contact. I felt more at ease knowing that at any time of the day or night Mr Man could ring me if he felt he needed to.

I went to the hospital that evening to visit him. “Visitors please report to the office” read the sign on the door. I didn’t have to do this at the other hospital as most of the time the entrance to the ward was locked and a member of staff had to let you in. Despite the inconvenience of this to the members of staff there they still managed to greet the visitors with a smile.

I walked in and knocked on the office door. A stony faced woman swung the door open and stood looking at me without a word, waiting for an explanation for my being there. I was a little taken aback by this cold greeting. Looking back I can see now that the staff were so disinterested in the patients that they hardly knew who was a patient and who was a visitor, and so treated everyone with the same level of contempt.

I was led to the garden where Mr Man was sitting on a bench, nervously rocking backwards and forwards. It was a beautiful sunny day. I cuddled up to him and we held hands, hardly knowing what to say to each other. This was a very stressful day for Mr Man; not only had he been moved from one hospital to another and denied the support of his wife, but also I was leaving that evening to go to the convention city for three nights. I would have felt guilty for leaving him at any time, but after such an unsettling day I felt worse. But it was “doctors orders” so to speak; after realising I had been on suicide watch for many months she insisted that I needed a break away. The hotel was booked, and my room mate was now depending on me for transport.

It was then that he told me.

“They’re watching me all the time. There are cameras’ everywhere”

In that moment I knew he was suffering from something more than severe depression, but I had no idea what; I just knew it was serious. He was so scared; he really believed what he was saying was true. I didn’t know what to say; I had never dealt with anything like this before in my life, but somehow I felt it was wrong to just dismiss his beliefs, brushing his feelings aside, and to tell him it was untrue. On the other hand I couldn’t confirm it either.

“How long have you felt like this for?” I eventually asked him.

He had felt that way for years but had felt unable to tell me. I left that evening feeling completely shell shocked. I didn’t know what I felt. I was numb. I was confused. Should I really be leaving him?

"There Are Cameras Everywhere" by Philippa King

I drove to Coventry city, chatting with my companion as I drove, but all the while with my conversation with Mr Man in the back of my mind. How we ever got there alive I’ll never know. I negotiated the ring road with only two months of qualified driving experience and my head still spinning from the bomb shell he had dropped on me before I left.

I had only taken my test because I knew that it was a possibility that Mr Man could be admitted into hospital at some point. I didn’t have time to mess about; I booked my test and then rang the driving instructor and told him I had 6 weeks until my test. He was brilliant and thankfully I passed first time. About 5 weeks after I had passed Mr Man was admitted into hospital. I don’t know how I could have supported him and visited him every day without being able to drive.

My companion and I met up with a couple of acquaintances once we had reached the hotel. The four of us ate together for the next three days but I had little to say. My conversation with Mr Man just went round and round in my mind. My companions were of an older generation and didn’t really understand mental health issues, but after losing three husbands to ill health my room mate was sympathetic to the strain of having a husband in hospital, especially at such a “young age” as she put it. It was difficult not having anyone to discuss my fears with and knowing that no one could really understand what Mr Man and I were going through though.

At the convention on the Saturday I bumped into an old friend who had previously suffered from a nervous breakdown after her husband had left, and had spent some time in a psychiatric ward herself. She asked me how Mr Man was doing and the truth poured out from me as I broke down in tears for the first time. At last – someone I could talk to who would really understand. She said to me “You must watch the film ‘A Beautiful Mind’. It’s all about a man with Schizophrenia”. I didn’t understand what she was trying to say to me, but I made a mental note of the film; her film choices were usually good.

I was exhausted when I returned to my home town on Sunday evening, but I couldn’t wait to see Mr Man again. I don’t remember much of my visit, only that the atmosphere on the ward didn’t ever feel “right”, but I couldn’t put my finger on the reason why. At the time I tried to put my uneasiness down to the people and surroundings being unfamiliar to me.

On the Monday my hairdresser friend came to my house to cut my hair. She also asked how Mr Man was and I told her what he had said about being watched all the time. “Do you think he has Schizophrenia?” she asked. She was the second person to mention this illness to me. I needed to find out what it was.

I did an internet search and found that there were four main symptoms* of Schizophrenia. They were (in their most simplistic form):

• Delusional thoughts. Commonly thoughts of being persecuted or being watched. This had been confirmed by Mr Man just four days earlier.
• A flattening effect. Lack of emotional expression, including facial expressions, tone of voice, and eye contact. This I had witnessed myself in the months leading up to his admission.
• Negative symptoms. Being withdrawn and lacking motivation to even care for ones own physical needs. Again, something I had witnessed during the previous months.
• Hallucinations. Most commonly, hearing voices. This was the only box I couldn’t tick; I didn’t know whether he was hearing voices or not.

I knew I had to ask him.

When I visited Mr Man that evening we sat in the “quiet room” together. He looked around the room nervously. The smoke detector was a camera; the plane flying overhead was watching too. I had never seen him looking so frightened and anxious.

“Do you hear voices?” I asked him softly as I held his hand. He nodded.

I tried not to ever confirm or deny their existence; I only asked questions to help me to understand what he was experiencing. Bit by bit the whole frightening truth came out. He didn’t tell me about the voices before because he was scared; they told him not to tell or they would hurt me. They used to help him write computer programs but now they were trying to steal his ideas from him. They were sending beams to steal his thoughts, and projecting holograms which spoke to him.

"Thought Theft" by Philippa King

I knew then. I knew. But the “educated ones” weren’t as easily convinced.


*Although this is what I had read at the time, Schizophrenia is a complex condition and should be properly diagnosed by a person qualified to do so. More information on symptoms can be found here.

Next post: Dark Days

As Time Goes By

Thank you to Mslmgarner, who recently posted a couple of questions for me in the comments section. I apologise in advance if my answers cover things that you already know, but your questions are similar to those I have been asked in emails and thought a more in depth blog response might answer a few questions for other readers as well.

Mslmgarner asks:

“How long have you and Mr. Man been dealing with Schizophrenia?”

Mr Man has been dealing with Schizophrenia for a lot longer than I have. He has been hearing voices since his teens, but I didn’t become aware of it until June 2002 – a little over 5 years ago – even though we had already been married for nearly 5 years.

Mr Man wasn’t deliberately secretive about his symptoms. As is common with all sufferers of Schizophrenia, he didn’t realise that what he was experiencing was part of an illness. I know that sounds strange to most people; “hearing voices” isn’t usually considered “normal”, so surely if you started experiencing this you would question it… wouldn’t you? But when hearing voices is combined with delusional thinking, you get a person who has no need to question their own mental health; in their own mind they “know” where the voices are coming from, be that from aliens, a supernatural being, or another source. For this reason a person with Schizophrenia won’t consider it unusual that no one else can hear the voices; they simply believe that they have been “chosen” and you haven’t.

It’s not unusual for people with Schizophrenia to keep their experiences to themselves or for them to go unnoticed by others. They may even deny that they are hearing voices, believing that they have a special, secret arrangement with the voices. This was the case with Mr Man; he believed that he had been selected to work for a company. It was only when his symptoms seemed to take a more sinister turn that the burden became unbearable for him and he confided in me what was happening. By this time he was nearly 30.


Mslmgarner asks:

“How do you deal with his episodes in private and in public?”

Mr Man doesn’t suffer “episodes” as such, as his symptoms are always there. There are two areas of his illness that we have had to learn to deal with: the negative symptoms and the positive symptoms.

It seems that he first started suffering from the negative symptoms soon after November 1999. He was suffering from the Epstein Barr virus, so excessive sleep was expected, but as time went on he began to neglect himself more and more and everyone assumed he was suffering from severe depression. At one time Mr Mans negative symptoms were so bad that I had to wash and dress him, and he wouldn’t eat or drink unless the food or drink was placed in front of him. He stayed in bed for most of the time and became very withdrawn. Obviously being so withdrawn these weren’t symptoms that we had to deal with in public.

As he improved he began to dress himself although I still needed to lay his clothes out for him. These days he just needs prompting or reminding occasionally to change his clothes, but he still hates having a bath. I know it sounds strange but when he was younger he had no trouble with these things at all, but now he seems too preoccupied to think about such “trivial” matters. On top of that there’s the “security” of keeping the same clothes on, and the “insecurity” of having to sit naked in a bath.

As I said, these aren’t really things that require “dealing” with in public, but now that he goes out more these can obviously have an impact on his social life. I try not to stress him too much by demanding that he has a bath every day or two, but if he starts to smell I obviously need to do something about it. Thankfully for both of us, he’s really not a smelly person. I think he appreciates the reminders to change his clothes, as obviously he doesn’t want to draw attention to himself in public, but it’s just not something he gives much thought to.


I first became aware of Mr Mans positive symptoms in 2002 while he was an inpatient in a Psychiatric hospital. His symptoms were obviously very acute at that time and I had a need to understand what he was experiencing, so the emphasis was on talking, understanding, reassuring, and comforting. We spent a lot of time just holding each other and this was obviously in private and in public, as there was little privacy on the ward.

As time went on I learnt that I needed to challenge his beliefs and help him to be able to distinguish between delusion and reality. This wasn’t easy. How do you convince someone that what they believe as fact doesn’t even exist? And let me tell you, a person in the grip of delusional thinking can give you some very convincing arguments. After a while the word “coincidence” starts to wear a little thin.

These days it’s a case of providing a distraction. The reassuring and the challenging are still needed at times but mostly he needs activity to keep his mind occupied. Medication has enabled him to gain “insight” into his illness – in other words he knows that he is ill now and that what he is suffering are symptoms of that illness – but the voices persist and they feed the delusions, so it’s important to keep him distracted from what they say.

In public it’s more a case of support and reassurance, as the voices and delusions cause a lot of anxiety, particularly when with strangers. When Mr Man was very poorly he shouted verbal abuse at people out of the car window a couple of times, but my reaction was more one of shock rather than “dealing” with it! I just try to be a calming influence as best I can; getting frustrated or shouting at a person suffering from psychosis only makes matters worse.

So as you can see, the way we deal with his symptoms has changed over time, due to experience and also due to a change in the severity of his symptoms. I dare say things will continue to change for us as time goes by.

Blip

As previously mentioned Mr Man has had a change in medication over the past month. I was recently asked in the comments section how Mr Man was doing, and if there were any improvements in his symptoms since taking Abilify. At the time it was too early to tell especially as his symptoms are prone to slight fluctuations in severity anyway. Although he will openly tell me when the voices are worsening and causing him anxiety, he tends to keep his delusional thoughts to himself, unless a change in his behaviour causes me to probe deeper.

This was the case yesterday. We had had visitors in the day and it seemed to affect him quite strangely. I’m not sure how to explain it; sometimes I “sense” something but I can’t describe what it is. After our visitors had left he remained quite distracted throughout the day. He had this expression on his face, and I knew he was deep in thought, but when I asked him what he was thinking he just replied with “I don’t know”.

By the time we had gone to bed he seemed to be ready to open up. He told me that he felt that our visitors were spies. In fact he could only name a few people that he doesn’t feel that way about. He felt that he was being watched all of the time, and he said that the voices were telling him to get on with his “work”. Previously when he had skipped some medication I would find him sitting on the floor in front of the TV with a note pad and pen, taking down “codes” from the TV adverts. Now the voices are telling him to do this “work” again, and although so far he has managed to resist, he said that the voices are becoming very persistent and threatening. Of course, the voices telling him to do these things is one thing, but it's when he starts believing it that I start to worry, which he is. I said I would contact his psychiatrist on Monday to see if we can get his medication increased, but he refused saying that “She’s in on it”.

I’m hoping that this is just a “blip” caused by the disruption of medication levels during the change over, but obviously it is something that I am going to have to keep an eye on. He doesn’t seem to be preoccupied by these thoughts all of the time, as he was able to keep himself busy for some of the time yesterday, and we had some interesting discussions about music and such like. I’ll have to be very careful to make sure that he definitely swallows his medication though, as I know that once the delusions start that he is likely to stop taking them, believing that the meds are used to “control him”.


I know I said previously that I didn’t really want to discuss his delusions yet as I wanted to retell the series of events in order, but obviously that isn’t happening. I seem to be recovering now from my recent bout of exhaustion so hopefully I will be able to write about his first hospital admission soon.

Through the delusional and back

People with Schizophrenia suffer from hallucinations and delusions. These are the "positive" symptoms previously mentioned. Hallucinations are when a person hears, sees, tastes, smells, or feels something that isn't there, and they believe it's real to the point that they cannot tell the difference between the hallucination and reality. The film A Beautiful Mind does a fantastic job of demonstrating this, because after watching half of the film you then realize that none of it was real - or was it? For a while you still feel confused, and this is exactly how a person with Schizophrenia can feel when they're half way between being ill and getting better. It's a very confusing and traumatic time, not knowing who or what to believe. John Nash, played by Russell Crowe in the film, reaches a massive turning point in the management of his illness, when he realizes something that helps him distinguish between reality and fantasy.* Unfortunately, not every person with Schizophrenia will find a "touchstone" to help them gain insight in this way, and so unless management is possible through medication, it can be an ongoing problem to help them to realise that their hallucinations are not real, as with Mr Man as I will explain later.

Mr Mans hallucinations are auditory - he hears voices. I think maybe this is where some people get the belief that people with Schizophrenia have a split personality. Maybe they think that it is the "other half" of their personality that they hear "in their head"? I don't know. I can tell you that this is not true though. People with Schizophrenia do not have a split personality. As for hearing voices "in their head" - remember that the hallucinations are so real that they cannot be distinguished from reality. If Mr Man closed his eyes and a stranger (a voice that he doesn't recognise) spoke to him, he wouldn't be able to tell the difference between the stranger speaking and the "voices", because the voices seem so real that they sound like they are in the room with him. Studies actually show that when people suffer from auditory hallucinations the same part of the brain is stimulated as when a person speaks to them.**

Many people with Schizophrenia suffer from auditory hallucinations. Sometimes these can be command hallucinations - when the voices tell the sufferer what to do, or commentary - when the voices do a running commentary on what the person is doing, or persecutory - when the voices threaten the person. Obviously these can cause a lot of anxiety for the sufferer, and along with delusions can make a person behave completely out of character. Delusions are beliefs that are not real, such as believing that one is being persecuted. John Nash, as portrayed in the film, believed that he was a secret agent of some kind, although in reality he suffered other delusions too. Another person I know believed she was Satan, and my husband believed that he had been selected to work for a "company".

Maybe behaving out of character is another reason why people wrongly believe that people with Schizophrenia have a split personality. Contrary to popular belief though, the sufferer cannot "snap out of it" and become "themselves" again, or switch between the two. The cause of their strange behaviour, as already mentioned, is due to hallucinations or delusions or a combination of the two, often referred to as Psychosis, which does not stop suddenly. Rather, this is a condition that requires medication and patience, and can take a long time to recover from. Actually some people with Schizophrenia may never recover. Statistics vary, depending on the source, but I have read that after 10 years 25% of all Schizophrenia sufferers will recover completely, either with or without treatment, and live a normal life. 25% will gain much relief from their symptoms through medication, and live relatively independant lives, and another 25% will gain a measure of relief from their symptoms but will have difficulty in living a normal life. The remaining 25% will remain hospitalised, or commit suicide. One statistic that every source seems to agree on is that one in every hundred people has Schizophrenia - maybe more common than you thought.

Mr Man probably fits into the third category - he has gained a measure of relief from his medication in that he is not usually delusional anymore, but he still lives with the hallucinations, although they are not as bad as they once were, and struggles with the negative symptoms as mentioned previously. Another important milestone is that he now has insight into his illness - that is, he knows that he is ill and that he needs medication. When people with Schizophrenia are really ill, they don't know it. Typically they have a "lack of insight" into their illness. If you ever hear someone say "I think I might be Schizophrenic" it's very unlikely that they are. You can't think that you might be delusional, or think that you might be hallucinating. By their very nature, if you can come to the conclusion on your own that these are symptoms of an illness and not reality, then you can't be experiencing them. Even now, although Mr Man is not usually delusional, he still struggles to believe that the voices are not real.

I say he's not usually delusional, but high levels of stress can aggravate symptoms. It can be quite difficult to strike a balance when encouraging a person with Schizophrenia to push the boundaries, to try to overcome their anxieties, while at the same time being careful not to push them beyond what they can cope with and thus making their symptoms worse, or even causing a relapse. Another cause of relapse is if the person stops taking their medication, which is very common in people with Schizophrenia for various reasons. Probably the most common reason is that sufferers believe that they don't need their medication anymore once they are feeling better again, and of course as previously discussed they're not aware when their symptoms start returning. Another reason is the awful and often embarrassing side effects that they have to endure, including drooling, and twitching. In the past Mr Man has stopped taking his medication because the voices "told him to", and as I said he still hears them and struggles to believe that they're not real.

Another misconception is that people with Schizophrenia are violent. This is due largely to the fact that whenever a person with Schizophrenia does act violently in some way it is publicised in the news. Of course people without Schizophrenia commit violent acts every day. People with Schizophrenia are no more likely to harm others than anyone else. In fact they're more likely to harm themselves, with statistics showing that one in ten sufferers commit suicide.


*For the sake of helping the viewer to understand the nature of hallucinations and delusions John Nash is portrayed as a person who suffers from both auditory and visual hallucinations, which is not the case. According to Wikipedia his hallucinations were exclusively auditory, and John Nash hints towards this himself in an interview at Nobelprize.org. Bearing this in mind, I am unsure just what exactly his "touchstone" was, or if indeed there really was one. As mentioned previously, some people with Schizophrenia will recover completely in time anyway.

**Some people hear voices in their head, but that is a different problem with other causes which I know little or nothing about. These are called Pseudo hallucinations. This is when a person experiences something that is not there, but they can distinguish between that and reality. As an example, Mr Man used to see faces that appeared like holograms. Although he was convinced that they were there, he knew that these were not real people, hence it was not a true hallucination. I don't know what connection there is between this kind of hallucination and Schizophrenia, if any.

Day to day

Today I thought I would post a little bit about what it's like living with a person suffering from Schizophrenia. I'm not talking about when Mr Man is psychotic and everything is a bit scary, I'll talk about that another time, along with those symptoms and how they affect him. I'm talking about living with the illness on a long term basis from day to day, because there is no doubt about it, no matter how "stable" his symptoms are, life is different.

I often bump into friends or acquaintances in town and they will ask me how Mr Man is. I always find it difficult to know what to say; I'm never really sure what it is that they actually want to know unless they ask specific questions like: "Is he at home now, or still in hospital?", "Does he get out much?", "Is he well enough to be left alone now?" But to ask "How is he?" - it's not usually as simple as "He's fine" or "He's not good", it's more complicated than that. I usually just say "Well you know, same as usual". I then often get that sympathetic look from people as they say to me "It must be very hard for you". This is another thing that I find very difficult to respond to. I usually just say something like "Yeah, sometimes" or just "Well, it's harder for him". But I go away wondering to myself just what it is exactly that they think I have to endure.

Our marriage has changed a lot since the worsening of Mr Mans symptoms, and his subsequent diagnosis. (Yes, believe it or not, I had no idea that he was suffering from Schizophrenia when I married him and he wasn't diagnosed until we had been married for 5 years, although he had been poorly for longer than that. More about that another time.) But although there has been a lot of changes, they are not all for the worse. The bond we have is much stronger now, and due to some of the experiences that we have shared (which I will go into in more detail another time) we have a trust that is unbreakable. He knows that I am fiercely loyal and protective of him, and I know that his love for me is so strong that he would give up his life for me. But yes, I suppose it is hard sometimes, and there has been a need for quite a few adjustments.

I don't suppose that the problems we face on a day to day basis are the ones that people imagine when they say "It must be hard for you". I suspect that maybe they think he suffers mood swings? Maybe even becoming violent? Maybe they think that he is extremely delusional all of the time, and has no ability to connect with the real world at all? I have no idea. But in reality the things we cope with day to day are more to do with the "negative" symptoms* of his illness, such as being withdrawn and not wanting to mix with people, and not taking care of himself physically. These problems can be at different degrees, but at the very worst he won't get out of bed at all, and I struggle to get him to eat or drink. Usually he is far more functional than that, and to anyone that doesn't know him well, he probably looks like there isn't anything wrong with him at all, apart from being a little antisocial.

The usual problems that people don't see are things like:

• Not changing his clothes or underwear - recently he started changing his T-shirt each day without prompting, because he wanted to wear his football shirts for the World Cup, but that was short lived and usually he won't change his clothes or underwear unless I tell him to, or even get them out for him.
• Not washing or bathing - usually he doesn't even brush his teeth unless I remind him, and he won't have a bath unless I run it for him and tell him to get in it. Gentle reminders don't work. Thankfully he's not really a smelly person.
• Not eating or drinking properly - he doesn't refuse to eat these days if food is prepared for him, but left to his own devices he doesn't even think about eating, and even if he does realise that he needs to eat, he doesn't really know what to do about it. I've tried giving him options as to what he can eat while I'm out, saying "If you get hungry you could eat this or that" but I am realising that options don't work. He is more likely to eat while I'm out if we decide on what he will have if he gets hungry before I leave, and even more likely to eat if I say "If you get hungry and you don't eat I'll be upset". Drinking is not so bad; he'll make himself the occasional cup of tea, but I was a little worried when we had all that hot weather. I was aware that I was constantly drinking, and he wasn't. I had to keep reminding him to have a drink.

These problems can become draining when they're on a day to day basis. Sometimes it's like having a child that never learns how to do things for himself. There are other challenges as well, such as having to cancel arrangements with other people, either because he doesn't want to come with me and have to mix with people or because he doesn't want to be left alone, because he suffers from a lot of anxiety. I found this very hard to start with because I am a very sociable person. It can lead to a lot of loneliness because unfortunately people don't always understand, so after a while they stop inviting you. I'm getting used to being at home more now though, and having other hobbies (such as blogging) helps. If I go out I always have my mobile phone on me so that he can contact me whenever he needs me, and I sometimes have to cut plans short if this happens. Also it's sometimes difficult to have visitors, although he is very understanding that I need to see other people, and so if it's too much for him he'll just disappear upstairs. (I really think I'm very lucky in lots of ways, because it would be so easy for him to say he can't cope and that's that)

Other frustrating things are his lack of memory, and the fact that he doesn't like change. This is one thing that has become an issue today, because after 9 years of staring at the same dreary net curtains I wanted to change them, but of course Mr Grumpy is not happy. (Mr Grumpy is his favourite Mr Man, and I call him this affectionately, not as an insult) In reality I wanted to change round the whole living room, decorate it and everything, but just having to live with different nets is really his limit (blinds were definitely a no no). On the bright side, his memory is so poor that after a couple of days he probably won't even remember that I've changed them! (When I was trying to convince him that new curtains would be nice, I drew his attention to curtains in another room which I had changed a couple of months ago, saying "You like these ones though don't you?" His reply was "Have you changed them then?") At least he has a sense of humour about his memory loss - more about that another time.

So, when people say "It must be very hard for you" yes, I suppose it is, but in a lot of ways it could be far worse. I could be married to a man with a roving eye, a man that shows me little or no respect, or someone who is utterly selfish. Instead I'm married to a man who is willing to die for me, a man who appreciates me, and a man who despite his limitations still tries to put me first. Of course he is delusional sometimes, and his hallucinations are always there, and these present completely different problems. I will talk about this another time.


*Negative symptoms are aspects of a persons personality that are kind of "missing" in people with Schizophrenia, such as lack of motivation to do anything or to care for themselves, and an inability or unwillingness to mix with other people.

"I have lost the colours of my character"

"The Negatives" by Philippa King

Patient UK says:

Negative symptoms can make some people neglect themselves. They may not care to do anything and appear to be wrapped up in their own thoughts. For carers, the negative symptoms are often the most difficult to deal with. Persistent negative symptoms tend to be the main cause of long-term disability.

There are also "positive" symptoms, and these are things that are kind of "extra" that other people wouldn't suffer from, such as delusions and hallucinations. I will talk about these more in depth next time.