Living with Schizophrenia: Is it Fair to be Treated as a Guinea Pig?

[wolram]

So I have been living with this (illness) for 8 years, I say illness because it is an illness not a Condition, people including psychiatrists class it as a condition that can be controlled by drugs, this is only partly true, I consider this unfair, I am not allowed to drive a vehicle or work with live machinery, but a person that has had several heart attacks can, how fair is that, I believe I have been treated as a guinea pig for these 8 years as i have been treated with several drugs all of which there are many side effects, the one I am on now reduces my white blood cells and can reduce my blood pressure which has to be tested every day, the dose is being upped every day until my peak is reached, only then will it be known to have worked or not, one can imagine how i feel,
If this drug works I may be able to get my drivers license back and get a job, if it does not work I am back to square one , how fair is that,

 

[mister mishka]

Every person has some sort of mental disorder or another, even societies have their own deillusionsal states of reality. It doesn't matter what you (or others) think is real, it is what is real, objectively. There are lots of things unfair in general society, if you feel this way about how schizophrenia is being labeled / treated, that is perfect motivation to do something about it. Talk to others who have similar mental disorders, get an understanding about it, help others to understand it. I agree that the general public knows very little about this disorder and other mental disorders, but that is why we should start understanding it more. If you help others in similar situations, you in turn help yourself (because that is how society changes into something better). I myself can relate to a lot regarding schizophrenia and other mental disorders, however much of my family knows only the "hollywood" definition of these. I've had many friends with these tendencies from a lot of different places in the world, and also how societies deal with it / with use of illegal and legal drugs are involved / and the persons overall history (mental / physical formation of habits / patterns).

Society is the best average really, but if you do not agree than that is perfect motivation to do something about it. You are part of society, and you can do something about it. Not only for yourself, but for others; that is where the real power is. If you feel the drugs are not working or that you have no control of this "disorder", than you have to take care of yourself first. Look at your habits, what you physically do each day and also your thought patterns. What you eat, how much you excercise, who do you interact with usually, what type of environment do you live in? I doubt drugs themselves can solve any of these very complex (and subjective) issues that come from mental disorders, legal or illegal. For the most part I feel they will sedate you or be used to solve very imediate issues of psychosis, to keep not only you safe, but society as well. If you can form a good habit of control, in what is accepted in the society you live in, than you can deal with society. However don't feel like you are "restraining" your normal self from being "normal". Meaning you should not really see this as some sort of mental disorder. Some of the best artists have been schizophrenic, some of the best psychopaths have been very successful in business; there is always a value if you can see things / do things others cannot!

 

[Greg Bernhardt]

I have a family member with bipolar schizophrenia. It's not easy. More resources need to be poured into mental illness research, treatment, and social awareness.

 

[ProfuselyQuarky]

Sorry to hear that wolram!

Every person has some sort of mental disorder or another

That's a pretty bold statement, eh? I'm pretty sure I don't have a mental disorder.

 

[berkeman]

So I have been living with this (illness) for 8 years

Sorry this happened to you wolram. It sounds like you are on the right course with your docs tuning up the medications. I know of some great success stories after the medications get fine-tuned.

Do you know what caused it? That's pretty late in life to develop this illness. Did you have an infection or something that caused you to come down with this? No need to say if it's too personal. Best wishes to you.

 

[wolram]

I have a family member with bipolar schizophrenia. It's not easy. More resources need to be poured into mental
illness research, treatment, and social awareness.

I agree Greg,I frequent a forum for mentally ill people, about 30 active members, and none of them can claim for disability pay, because schizophrenia is not classed as an illness, and yet we are classed unfit to hold a drivers licence, this is crazy.
I feel so trapped I would love to be able to go to work and drive a car, why not as i have said people who have had several heart attacks can drive a car, where is the sense in that, they could die behind the wheel of a car and kill several people.
I feel like am between a rock and a hard place.

 

[wolram]

Sorry this happened to you wolram. It sounds like you are on the right course with your docs tuning up the medications. I know of some great success stories after the medications get fine-tuned.

Do you know what caused it? That's pretty late in life to develop this illness. Did you have an infection or something that caused you to come down with this? No need to say if it's too personal. Best wishes to you.

I had a dirty marriage split and had one heck of a time getting custady of my daughter which turned me to drink.

 

[wolram]

Sorry to hear that wolram!

That's a pretty bold statement, eh? I'm pretty sure I don't have a mental disorder.

Thanks Profusley, I have had several people tell me to snap my self out of it as if I were just in a mood, they just do not understand.

 

[Borek]

More resources need to be poured into mental illness research, treatment, and social awareness.

Not long ago I have read a "Book of woe" by Gary Greenberg. It is IMHO poorly written (could be cut in half without losing much) and ends nowhere (techincally it tells a story without an end), but the picture it paints about what we know is rather sad.

 

[mister mishka]

That's a pretty bold statement, eh? I'm pretty sure I don't have a mental disorder.

From a schizophrenics point of view you would seem like the one who has a mental disorder, right? Whats "normal" seems to be only defined by the highest average, and nothing else. Classifying someone that is different as a disorder compared to what normal should be, just seems to be entirely absurd. That is what I meant, plus if you don't see any disorder in the general average, well than you should not be shocked when Hillary Clinton or Donald Trump becomes president, that is the current normal.

Wolram I have also gone through something similar, also a divorce 2 years ago and also was expecting a child, but my then wife took an abortation and ran off into some religious cult. I still to this day think about my "lost" child, but I keep a little teddy bear that helps me deal with it and gets me of my head and back into reality (ironically). I have had schizotypal tendencies in the past and had psychosis a few times, but I was never diagnosed with it fully, due to I could control it (or in other words, not let it have control over me). If you have been through a lot, for a long time, it is quite normal to have some kind of mental disorder (it would be more abnormal if you didn't lol).

I again recommend you talk to others who have also been through a lot, you will begin to feel normal again, relate to others, be more objective, thus overall changing your reality for the better. Just even finding ways to express all of this stuff in your head and out into the world, like some sort of art, thus it becomes something now objective and you can deal with it, rather then subjective and lost in its endless loops.

 

[zoobyshoe]

I am not allowed to drive a vehicle or work with live machinery, but a person that has had several heart attacks can, how fair is that

I wonder how the law is written and usually interpreted there. Here in the US I don't believe there is any legal prohibition against a person with a mental illness driving. On the other hand, a person with known tonic-clonic, or, complex partial, seizures is not permitted to drive (reason being it's a reasonable expectation they could suddenly lose consciousness at any time).

A person with schizophrenia, or any mental illness, might have their license taken away here in the US as a result of some incident of reckless driving that was caused by their condition, but the suspension would be due to the reckless driving, and not the condition. A person with no psychiatric diagnosis at all would have their license revoked for reckless driving.

I know a guy with schizophrenia here whose been driving for decades. He even has severe tardive dyskinesia from his meds ( a lot of physical tics), but he has no accidents or tickets, so the government has no problem with re-issuing his license every time. I have a diagnosis of major depression, myself, and it's a non-issue as far as the Department of Motor Vehicles goes. If you keep your registration current and insurance current and drive safely, they don't give a hoot about your mental diagnosis.

 

[Sophia]

Wolram, I'm sorry you have to go through this. I can't say that I understand you fully, because no one can. I just want to tell you that I (and surely many other members) are here to listen so feel free to share your thoughts with us any time. It helps to talk to someone.
I too have mental issues so I know you just can't get over it. It's not that simple at all. Often times it hurts so much when people don't understand this.

 

[wolram]

Zooby, I have argued with my sphyc about getting my license back, but he says knowing i have a mental illness I would not be insured to drive, the same as working with live machinery i would be un insurable, this is so not fair because if i am working and engrossed with my job i can cope with my illness better.
I contest that a man having had a heart attack three times is much more a liability driving, working than i am. i can only think that our laws a a farce.

 

[wolram]

Wolram, I'm sorry you have to go through this. I can't say that I understand you fully, because no one can. I just want to tell you that I (and surely many other members) are here to listen so feel free to share your thoughts with us any time. It helps to talk to someone.
I too have mental issues so I know you just can't get over it. It's not that simple at all. Often times it hurts so much when people don't understand this.

Thank you Sophia, peoples understanding of mental illness is very shallow, i have been told by several people to snap out of it as if i was just in a mood.
I only know 30 people with my illness and they all say they are treated the same.

 

[zoobyshoe]

Zooby, I have argued with my sphyc about getting my license back, but he says knowing i have a mental illness I would not be insured to drive, the same as working with live machinery i would be un insurable, this is so not fair because if i am working and engrossed with my job i can cope with my illness better.
I contest that a man having had a heart attack three times is much more a liability driving, working than i am. i can only think that our laws a a farce.

Yes, it seems like our laws are much different. In fact, an employer can get into serious trouble here if they try to fire someone who gets diagnosed with a mental illness while in their employ or if they reject an applicant based solely on their having a mental illness. Here there is much more of an effort to keep people in the work force. It's true an insurance company might require higher premiums for a company that has a mentally ill employee, but that company can't fire or reject someone for that. They just have to eat it.

 

[wolram]

Thanks Zooby, it seems our laws are a farce, if one is mentally ill one can not claim for dental bills or for glasses, yet some one with a bad back can, i can claim for food and shelter only, yet some one with a bad back can claim for a vehicle, dental bills and for glasses and get a full disability pay, this is so not fair.
I can work for charity ie i do two days a week working for charity, so what is the difference to having a full time job.

 

[micromass]

That's a pretty bold statement, eh? I'm pretty sure I don't have a mental disorder.

You don't know. There might still develop one. You're under 18 and many mental disorders only appear after 18. Or you might have something and not be aware that it's a mental illness (happened to me). Are you scared of spiders? Bugs? That's a mental illness too.

One in four adults experience a mental illness in a given year. http://depts.washington.edu/mhreport/facts_prevalence.php
Estimated is that more than 65% of all people experience a mental illness throughout their lives. So you're more likely than not to have a mental illness. These illnesses might go from something very treatable like depression to very serious disorders like psychopathy.

 

[QuantumQuest]

Sorry to hear about that Wolram. Anyone outside this, with no personal experience about it, cannot understand beyond some shallow things. Difficult as it is, you have to get over it, you owe it to yourself. As berkeman says, there are great success stories, after the medications get fine-tuned. So, be patient, help the medication do its thing by not thinking about it, do useful and entertaining things and help others - this is a kind of self - medication in many cases. It is not easy, you cannot get over it just like that, but on the other hand you can get rid of it. Self control sometimes, seems like an empty promise, an abstract useless thing that cannot be reached, but it is not. Good fight begins inside our brain. Don't let this thing even breathe.

 

[wolram]

You don't know. There might still develop one. You're under 18 and many mental disorders only appear after 18. Or you might have something and not be aware that it's a mental illness (happened to me). Are you scared of spiders? Bugs? That's a mental illness too.

One in four adults experience a mental illness in a given year. http://depts.washington.edu/mhreport/facts_prevalence.php
Estimated is that more than 65% of all people experience a mental illness throughout their lives. So you're more likely than not to have a mental illness. These illnesses might go from something very treatable like depression to very serious disorders like psychopathy.

This is not really what my op was about, i am talking about the unfairness of the law regarding mental illness and the way sufferers are treated, sure every one can get depressed, this is not a long term thing one gets over it, schizophrenia is different it is a long term illness, some people respond to drugs but i have suffered this illness for eight years and have had all manner of drugs which simply do not work, the side effects of them are worse than the illness.

 

[StatGuy2000]

This is not really what my op was about, i am talking about the unfairness of the law regarding mental illness and the way sufferers are treated, sure every one can get depressed, this is not a long term thing one gets over it, schizophrenia is different it is a long term illness, some people respond to drugs but i have suffered this illness for eight years and have had all manner of drugs which simply do not work, the side effects of them are worse than the illness.

According to the UK government website, you have the option of reapplying for your driver's license if your physician determines that you meet the medical standards for driving and disclose your condition to the Driver & Vehicle Licensing Agency (DVLA). Presumably, since you are on medication at the moment that should be working (as I'm speculating based on your posts in this thread), your physician should be able to provide the requisite documentation indicating that you are not a danger to yourself or to others while on the road, hence allowing you to work and drive again.

At any rate, I'm sorry that you have to go through all of this, and hopefully your doctors will ensure that you have the right combination and dosage of medication that will provide you with relief from your symptoms. I can only imagine your frustration, but treating schizophrenia (along with other mental illnesses) is very complicated, and medication & doses that work for one individual may not do so for others.

 

[Evo]

Your symptoms just do not sound like schizophrenia. I know that there are no tests they can give and it's just a decision on the part of the doctor, but I remember the symptoms you had and I never would have thought of schizophrenia. I am so sorry that you are having to go through this wolram.

 

[Dr Transport]

Sorry to hear about it pal, terrible condition, takes a toll on the person and they don't even know they are having the experience.

 

[berkeman]

Your symptoms just do not sound like schizophrenia. I know that there are no tests they can give and it's just a decision on the part of the doctor, but I remember the symptoms you had and I never would have thought of schizophrenia. I am so sorry that you are having to go through this wolram.

I agree. We don't give diagnoses (Dxs) here on the PF, but very late onset schizophrenia at your age with no infection trigger would be extremely rare. Maybe talk in more detail with your doctors, wolram. Something is not matching up here. Best wishes for a positive path forward for you.

http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml

 

[zoobyshoe]

Your symptoms just do not sound like schizophrenia. I know that there are no tests they can give and it's just a decision on the part of the doctor, but I remember the symptoms you had and I never would have thought of schizophrenia. I am so sorry that you are having to go through this wolram.

I missed any description of his symptoms, but it is absolutely true that, if you go to a psychiatrist they will try and shoe horn you into any psychiatric diagnosis they can. A general practitioner may or may not recognize odd symptoms as neurological, so it's a toss up whether they refer you to a psychiatrist or neurologist. Wolram might benefit from making a separate appointment for an evaluation by a neurologist if that's possible.

 

[Evo]

I missed any description of his symptoms, but it is absolutely true that, if you go to a psychiatrist they will try and shoe horn you into any psychiatric diagnosis they can. A general practitioner may or may not recognize odd symptoms as neurological, so it's a toss up whether they refer you to a psychiatrist or neurologist. Wolram might benefit from making a separate appointment for an evaluation by a neurologist if that's possible.

His descriptions were over the years, they started with short blackouts at work.

 

[zoobyshoe]

His descriptions were over the years, they started with short blackouts at work.

That's exactly the sort of thing you should take to a neurologist.

 

[Fervent Freyja]

If this drug works I may be able to get my drivers license back and get a job, if it does not work I am back to square one , how fair is that,

Your license was removed because you were on a major tranquilizer (I assume)? That is odd. Psychiatrists in my country do try to schedule doses around that! I'm not diagnosed fully schizophrenic, but it runs in my family, so it is one of the paths we are mindful of! I take a major tranquilizer that is also used for schizophrenia. Right now, I'm taking mine at night; whereas before, I was taking two doses, one after arriving at school and late afternoon (helping me sleep too). It does seem to be working better. I can drive, as long as I hadn't taken a dose a few hours before, most sedating effects burn off after 6 or so hours for me!

Also, unless medication or medical history is a requirement for performing the job duties, employees in my country aren't required to disclose a mental illness to an employer. They shouldn't discriminate because of that. But, many people are comorbid... Alcoholism or drug use isn't uncommon to be diagnosed alongside mental disorders (that is an employers business though).

Good luck with the new medication!

 

[Evo]

That's exactly the sort of thing you should take to a neurologist.

IIRC, he had no mental issues.

 

[wolram]

I missed any description of his symptoms, but it is absolutely true that, if you go to a psychiatrist they will try and shoe horn you into any psychiatric diagnosis they can. A general practitioner may or may not recognize odd symptoms as neurological, so it's a toss up whether they refer you to a psychiatrist or neurologist. Wolram might benefit from making a separate appointment for an evaluation by a neurologist if that's possible.

Is it possible that after 8 years that i have been miss diagnosed, My daughter thinks i may have alcohol related illness, i did have an alcohol problem years ago, but
I am teetotal now.
My psychiatrist has said nothing about being to old to have schizophrenia and has not mentioned an alternative illness. even if there is one that has all the symptoms of schizophrenia.
I must say I am at the end of my tether and need help, may be help that my psychiatrist can not give me.

 

[Sophia]

it is possible that your diagnosis is not right. Can you visit another psychiatrist for a second opinion?

 

[wolram]

it is possible that your diagnosis is not right. Can you visit another psychiatrist for a second opinion?

What else can it be i, have searched the internet with no luck, how can i go to an alternate psychiatrist and say that i do not have schizophrenia what do i have, if i have no idea myself.

 

[Sophia]

Today I was watching documentaries about people who were deemed incapacitated by psychiatrists in Ukraine and Bulgaria. These people are normal, just suffered under institutional system and never got chance to prove they are mentally healthy. They were examined and it was proven in court that they should have all citizen rights.
These documentaries I saw were so so sad because they were mainly about children in orphanages who are labelled as "uneducatable" and "oligophrenic" as soon as they enter certain institutions. The result is that the children are not given any form of psychological stimuli - they only sleep, eat and sit on chairs rocking back and forth. No one even talks to them. (one such institution was closed in 2009 after BBC documentary and international pressure)
So yes, today I saw that psychiatrists can make huge mistakes that can affect people's lives drastically. Fortunately, you still have a choice to choose your doctor freely. Or ask your current doctor to explain to you why he thinks you have this diagnosis and whether there is a chance it's something different. Be open about your worries and doubts.

 

[Sophia]

What else can it be i, have searched the internet with no luck, how can i go to an alternate psychiatrist and say that i do not have schizophrenia what do i have, if i have no idea myself.

You don't have to have an idea. It's their job to tell you what's wrong with you!
Don't be afraid, it's normal that people ask for a second opinion.

 

[StatGuy2000]

What else can it be i, have searched the internet with no luck, how can i go to an alternate psychiatrist and say that i do not have schizophrenia what do i have, if i have no idea myself.

First of all, getting a second opinion in terms of a diagnosis of a serious illness (including schizophrenia) is a good thing, especially if your symptoms may be indicative of a neurological disorder instead of schizophrenia. Can you not speak to your GP about getting a referral to a neurologist and/or another psychiatrist, outlining your concerns, and describing your full symptoms (as well as the medication you've been prescribed)?

 

[wolram]

First of all, getting a second opinion in terms of a diagnosis of a serious illness (including schizophrenia) is a good thing, especially if your symptoms may be indicative of a neurological disorder instead of schizophrenia. Can you not speak to your GP about getting a referral to a neurologist and/or another psychiatrist, outlining your concerns, and describing your full symptoms (as well as the medication you've been prescribed)?

Thanks StatGuy, I will get a second opinion, one thing though, i will be very angry if another psychiatrist says i have some thing other than schizophrenia.
That will be eight years of my life wasted