Hi
Today my parents took my sister to a place where they do TMS therapy to see if it can help with some symptoms of her schizophrenia such as anxiety and depression. The doctor evaluated her and said she wasn’t the right candidate for this therapy because “schizophrenics get worse as the years pass by and is a progressive disease” he also mentioned that “schizophrenics live a short and miserable life probably until 40 years of age” mind you, my sister is 30 years old. Since this came directly from a doctors mouth, my parents are frantic and extremely sad and hopeless. They now think my sister has no resolution and that she’s doomed for life. my sister was just recently diagnosed a few months ago so this is all very new to us. Anyone with experience who has actually talked to a psychiatrist have any advice or input on this please?
Hi Valerieleiva, my son wasn’t diagnosed until he was in his 30’s.I am sorry the TMS therapy doctor gave such a negative view of schizophrenia. Personally, I think the doctor wasn’t the right candidate to help your family.
We were really lucky and just by chance we listened when someone told us to take the Family to Family course which is given by local NAMI chapters and is free of charge. You and your parents need to take the series of classes together as soon as possible. Taking Family to Family is really the best place to start. In the meantime, you and your parents should read E Fuller Torrey’s book “Surviving Schizophrenia”. The more research you do the more you can help your family get their lives back on track.
You should focus on your life continuing forward. I do know what its like to be in the center of the storm when you are living with someone who’s having trouble managing their schizophrenia symptoms. Give yourself permission to continue with your life, its important. I think of it as damage control. We have to do the best we can to keep our lives and our family life going.
Progress will take a long time.(Which by itself is a good reason to keep your life on track) Your sister has to work out how to handle her symptoms, its not easy. Your sister’s life will probably be different than your parents had planned, your parents will also need time to adjust their expectations.
Personally, I prefer the expression “someone with schizophrenia” instead of labeling our family members by their disorder. At Family to Family the teachers pointed out that we don’t call people with cancer “cancerics”
Is scz a progressive disorder? - Yes, sort of anyway. Schizophrenia has 3 phases and you will learn about those phases in Dr Torrey’s book. The third phase is the residual stage, usually our family members with schizophrenia have a lessening of their symptoms later in their life.
Do people with schizophrenia die young? Statistically speaking, yes. The reasons for this vary and this question is also covered in Dr Torrey’s book.
I’m sorry the TMS doctor upset your parents. One of the many things its important to understand is that most doctors aren’t very familiar with schizophrenia. While it would seem that any psychiatrist should be able to help your sister, that’s not really the case.
Its wrong for anyone to declare that your sister will “live a short and miserable life probably until 40 years of age”.
Read Dr Torrey, attend NAMI’s Family to Family class and keep an open mind on possibilities. Many of our family members are happy in their lives. How to chart the course to get there is the question. Best of luck to you and your family.
Thank you so much for taking your time to explain things to me and respond to me, It truly means a lot. Speaking to someone with actual hands on experience, who has a family member with schizophrenia is very helpful. Best of luck to you and your family as well.
Yes if you dont get the right team of Dr.s
To expand on what @hope posted, while people with schizophrenia statistically have shorter life spans, reality is not nearly as bad as the doctor stated, and I advise you look for a better informed doctor with less stigma toward people with SZ.
Per a study in 2016 people with schizophrenia worldwide have an average life expectancy of 64.7 years with males living on average to 59.9 years and females to 67.6 years. This is a survey of surveys study, a few regions like Africa and Asia bring the numbers down, so these are conservative numbers. Contrast this with a similar study of people with HIV infection in the US in the same year with a life expectancy of 77 years on average.
I’ll give a quick rundown on factors I know that lead to shorter lifespans, for people who don’t have Dr. Fuller Torrey’s book handy. Cigarette smoking and other drug use: People with SZ are prone to nicotine addiction and other drug use which tend to shorten life spans. Second and later generation anti-psychotic drugs add risk for metabolic syndrome which is a combination of added risks for high blood pressure, high cholesterol and diabetes. People with SZ are at increased risk for suicide, especially if untreated. People with SZ trend toward lower socioeconomic status as the disease progresses which puts them at risk in many ways, from poor healthcare and diet to unstable housing. Due to anosognosia (lack of insight that they are ill) large percentages of people with SZ go untreated. People with SZ are also less likely to get regular physical medical care, both due to their illness and other related factors.
I recently had my 59 and a half birthday which means I can contemplate early retirement. Elyn Saks is 64, and John Nash was 86 when he died. Bottom-line is that doctor doesn’t have the slightest idea of what he was talking about. He either isn’t keeping up with the science, or he’s badly prejudiced by stigma, so you wouldn’t have wanted him to care for your sister anyway.
Disclaimer: While I am a part-time caregiver of my brother and father with SMI, I was diagnosed with SZA over thirty years ago. I’m an advocate of appropriate drug treatments for SMI, but I feel they are incomplete treatments and additional CBT, supportive talk and psychosocial therapies are helpful where feasible. Any drug advice is from personal experience or research and not a substitute for qualified Psychiatric care.
Thank you very much for your time and response, you are always very helpful!
Agreed totally with Maggotbrane. Schizophrenics don’t always get worse with life. In fact, it is said some positive symptoms such as hallucinations and delusions become more benign as they age. Schizophrenics are at a higher suicide rate so that decreases the life expectancy also.
Negative symptoms I would argue account for far more of the low life expectancy of schizophrenics because they become unmotivated to do anything. A lot of schizophrenics become obeses because they are on anti-psychotics and refuse to control their diet. I was on Olanzepine and I had to eat 1600 calories a day to maintain my weight. Most people on the diagnosed forum says that is unhealthy. What they don’t recognize is that it is far more unhealthy to be overweight.
Never give up on your sister. She is diagnosed at 30, which is a typical female onset age. I assume she has already developed significant life skills, etc, so regaining them is not impossible. There are people with earlier onset and have less work experience and life skills that have recovered.
I totally agree with @Lirik on the weight issues, these are often bundled in with metabolic syndrome, as weight gain is especially bad for some drugs— Olanzapine (Zyprexa) in particular. I forgot to mention this— good catch.
Another thing Lyrik reminds me of is most of the issues mentioned can be mitigated if you are aware of them. Regular physical doctor visits are important, my previous psychiatrist wouldn’t allow me to continue to visit unless I had regular physical exams. He also checked my blood pressure regularly. My present psychiatrist often coaches me on motivation tricks for exercise to overcome negative symptoms of avolition, and is hungry for my lab results anytime I see my PCP.
Another thing is drugs are improving all the time. I took Olanzapine for a while, and the weight gain and resulting lipid issues were a problem, but newer drugs addressed this and it’s much less of an issue.
And the residual phase @hope mentioned is quite real for me. I haven’t experienced any positive symptoms in 3 or 4 years, and before that with ever decreased frequency. Not sure if it’s because I’m better with coping mechanisms and avoid situations that are unhealthy and stressful for me, or the progression of the disease has run it’s course, but I’ll take it— along with medication of course.
That is absolutely not true. Find a new doctor who is up on research on schizophrenia. Attend the NAMI family to family class. I learned so much about this disease in the class and I found so much hope. My son is now living in his own apartment taking golf lessons, and enjoying his life. It’s not perfect but it is a good life.
What everyone else said — those comments made by the doctor did not give you the full picture (I hope you find another doctor). Unfortunately, homelessness and schizophrenia can go hand in hand, and if you are living rough then absolutely it’s possible that this has an affect on your long term health and therefore longevity. However, SZ of itself doesn’t mean you are going to expire around 40 years of age. That is nonsense. My mother is 79, and still going strong, living with paranoid schizophrenia. She’s gained weight with the Olanzapine, but she is doing okay, and not as frail as some almost 80 year olds that I see. Advice and input would be to just be there for her, be consistent, and try and feed her at least one healthy meal a day — evening meal is best, because a full tummy helps you to have a good night sleep (not too late, around 7pm). Often when suffering from anxiety and depression, you don’t have much motivation, and you may be tempted just to eat something easy like cheese and bread, that isn’t that nutritious. Omega-3 is important, so salmon 2-3 times per week is helpful. Lots of leafy greens and vegetables, along with protein for B vitamins. That is something easy to do, that has a big impact and will make your sister feel safe and more at ease. Good luck!
Lots of good answers here already. I agree that it is time to find another doctor. There are lots of examples that refute his grim prediction (including my son as one of them). There are good doctors that might still not be right for your situation, but this guy sounds like a real loser. Try, try again until you find the right one. They are out there.
You have to change the doctor.
Ppl with schizophrenia live shorter for the same reason of diabetics and ppl with hypertension… which is weight gain and sedentary life style. Some meds like Clozapine needs monitoring WBC and lymphocytes every week.
Antipsychotics can lower your life expectancy by up to 20 years roughly. I’ll put it this way, they diagnosed me with different shit over the years, and I started realizing that the meds were making me unstable as hell, and just because you have an episode doesnt always signify a disease and just because a docter diagnosed someone doesnt mean it’s even true neccesarily. Seek a second opinion at least. They told me I had skitzofrenia years ago, but all my symptoms went away after I detoxed off of the meds completely. I take an adaptogenic mushroom complex now and I dont even feel like theres anything wrong with me anymore, I’m stable, I have a girlfriend and I’m happy, it is much easier to manage my life now. Keep in mind that there are always many variables to consider, and that psychiatric medication doesnt treat the cause of the illness, it usually just covers it up.
Can you cite a source here? I mentioned metabolic syndrome, which if untreated can shorten life, but untreated SZ is associated with increased suicide and other significant health risks as well as a profound lowering of socioeconomic status.
I don’t think this a valid argument. HIV drugs don’t cure HIV, but they prolong the lives of people who take them. Insulin and other drugs for diabetes don’t cure the disease, but enable longer and healthier lives for those who take them. There are plenty of diseases and genetic conditions without cures, even terminal ones, but we still treat them.
Not trying to knock your life choices, but you are a study of one who thinks he was misdiagnosed. Not sure that’s a particularly strong reason to reject psychiatric treatment in all cases.
I’m 45
Diagnosed age 18
I smoked 60 a day, totalled 28 pack year in 14 years and quit in 2006
I’m certain my lungs are too damaged to support me
It was suicidal smoking I hated myself so much
And it was impulse control problem
I couldn’t crave and not have one
It was scary
I tried to hate it and sucked it in as much as I could and hoped it was the last
Sorry that was a bit graphic
Just how it was for me
I met my husband in 2007 and we are happy forever after
But I expect to die in about 10 - 15 years because of my actions
I’m compulsive addictive
I took drugs but my drug of choice as they say was cigarettes
Totally floored me
My younger sister was diagnosed schizophrenic at 15
She had a progressive course and was psychotic for 12 years
She was hit by a car and killed aged 25
I think due to her illness
Our youngest sister displays undiagnosed schizoaffective
She is psychotic and a severe alcoholic
Currently not drinking or smoking but now classically mentally ill
My course of illness was that when I came off my meds I was severely unwell for on and off 3yrs
When I was about 30
A lot worse than ever
But please don’t give up
Even if that happens
With the right med I’m 14 yrs sane
Thank you for expressing your tough experiences. So sorry you and your sister are going through this illness and I’m sorry for your sisters loss. I appreciate your time in responding, I wish the best for you and your sister and may you continue to get better.
I dont really think I need to cite my source because it’s common knowledge, even my psych said about 20 years. She said that because of the suicide rate of people with skitzo my point was invalid. But I can again testify that I felt like a slave being forced on all of that shit most of my life, knowingly taking something that makes me depressed and suicidal, manic, or actually caused psychosis for me. I’m still doing fine, actually I feel better now than I did when I wrote my response originally. Being in the mental health system feels like being a lab rat for a psuedo science cult. I’m not saying that people who are having horrifying delusions and crazy shit like that dont need some kind of therapy and possible medication, but there are many cases like my own where the docters are actually making these people sick. When you try to refute their logic, they talk to you like you have no idea where you are or what’s going on and litterally try to brain wash you into accepting their world view. Well, I’ve ONLY experienced delusions, manic/depressive episodes and psychotic depression on medication, or while withdrawing from it. Now that I’m on the other side of the tunnel it feels strange not feeling like a complete emotional disaster and not feeling like I could crawl out of my skin. Psychology>psychiatry.
Your reply only reinforces my point. Good luck to you, but I urge caregivers to go with fact-based arguments backed up by recent peer studies and not anecdotal feeling-based study-of-one hunches and cherry-picked statements from a doctor you otherwise disagree with.
And your reply reinforces my point that psychiatrists look at mental health patients like numbers and not actual people.