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.
6 comments:
Although I should have understood it from your posts maybe, I did not realize that Mr Man has constant symptoms even with medication. As the person commented I had thought they were more episodic than anything else.
Hi Catherine,
I suppose it depends what you call an "episode". Mr Man is never completely free from symptoms but stress can make his symptoms worsen, causing a kind of relapse. Also he skipped some medication one time causing his symptoms to become very bad, very quickly. I suppose some people might refer to these as "episodes", I'm not sure, and I know I have used the term (perhaps wrongly?) myself in the past.
We could do with a mental health professional answering this couldn't we? I'm not sure what the medical explanation of an episode is, but one dictionary definition is "a happening that is distinctive in a series of related events".
I believe the highs and lows of people suffering from Bipolar are more likely to be described as "episodes" due to the distinctive nature of each one, although being part of a series of related events (related in the sense that it is all part of the same illness).
Does that make sense? Or do I need to go to bed? :)
I suppose I did look at it as episodic like bipolar or depression. Shows how much I know, right?
Each of us can only go by our own experiences, Catherine. Before Mr Man became ill I thought Schizophrenia was a split personality like most other people do.
How do you respond when Mr Man tells you he is hearing voice? My boyfriend hears voices that want to take him away and hurt him. When he was hospitalized the second time I asked his doctors but no one could answer my question. I try to remind him that he isn't going anywhere and everything will be ok. Any suggestions?
It sounds like you are doing the right thing C. When Mr Man's voices are bad and threatening him, the only thing I can really do is reassure him that nothing bad will happen. Distracting him from the voices helps too. I try to engross him in a conversation about something he enjoys, or get him to listen to music.
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