Family and Caregiver Schizophrenia Discussion Forum

Any full recovery story?

Yesterday, I talked with someone on NAMI line and he told me that there is no possible full recovery for any kind of psychosis.
I am trying to stay hopeful but it is so hard.
My brother has not been diagnosed yet, so i don’t even know what type of Psychosis he does have.
I know psychosis does not have any cure, but I would like to hear any kind of success story that you know of. Have you ever known anyone with psychosis who fully recovered after their first episode?
Also, if my brother accepts to see a doctor and find the right medication, how long does it usually take for the medication to reduce the symptoms? I know it is different for each person, but I just want to get an idea.

It depends on what you mean by full recovery, psychosis and episode. I was hospitalized once over 30 years ago, but so far never again and I think it unlikely I will return. My diagnosis was initially SZ but it was changed to SZA after I was hospitalized. I have psychotic symptoms occasionally, but the impact of these are kept in check by medication and psychotherapy. My last bout of symptoms was about three years ago, I adjusted medication and made some changes in my life to mitigate them.

My whole professional career has been after I developed SZA. I work in science and technology and completed my degree after I developed the illness. I own a house and my salary is in the 80th percentile. There are others with similar success stories. I suggest you google Elyn Saks who has done studies of highly functioning people with SZ with money she was awarded from the McArthur ‘Genius’ award for her memoir ‘The Center Cannot Hold’. She holds a PHD and teaches law at USC. She was diagnosed with SZ, but was also diagnosed with SZA (Schizoaffective Disorder).

There are other high functioning people with SZ who are ‘out’, but they are largely in academia, art and entertainment, writing and medicine. Most of us would rather be left alone because of stigma. So it’s hard to estimate how many of us there are. People who take their medication and act relatively normally and want to be left alone aren’t particularly interesting to increasingly sensational media, so it’s no surprise you haven’t heard many success stories.

Even if you only count people with Schizophrenia as having psychosis, which is incorrect, and you count full recovery as being symptom free without medication, there are rare cases of what people call spontaneous remission. This is far rarer than my kind of ‘recovery’. Less serious diseases like PTSD, Bipolar Disorder, some forms of depression, dementia and Parkinson’s disease can also cause psychotic episodes that aren’t permanent, while the underlying diseases may be chronic. Temporary psychotic episodes can also be triggered by certain drugs.

On the whole Schizophrenia and related diseases take life long treatment, but prognosis’s vary. Full recoveries like mine seem rare but possible. I think NAMI errs on the side of not getting people’s hopes up, and I try on this forum to represent my experience as not typical, but I certainly dream with better treatments it could be the norm.

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Weird coming from NAMI - check this article:

https://www.nami.org/Blogs/NAMI-Blog/June-2019/Experiencing-a-Psychotic-Break-Doesn-t-Mean-You-re-Broken

The last paragraph says: " Experiencing psychosis may feel like a nightmare, but being told your life is over after having your first episode is just as scary. Both personal recovery and clinical recovery are possible— that’s the message we should be spreading to the thousands of young people experiencing episodes of psychosis."

I started to say I only know of one person who’s experienced psychosis (my son), but I just realized it’s not true. A friend of mine confided to me that she had gone through something a few years ago, and I never knew. And would never know now, by talking to her. She said she’s found it’s extremely important for her to get enough sleep, but other than that, she feels fine.

This book:

https://www.amazon.com/Anatomy-Epidemic-Bullets-Psychiatric-Astonishing/dp/0307452425/ref=asc_df_0307452425/?tag=hyprod-20&linkCode=df0&hvadid=312021251979&hvpos=1o1&hvnetw=g&hvrand=13195583714438916346&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9009745&hvtargid=pla-433815157104&psc=1

is a bit controversial here, because it’s pretty anti-meds, and I think it’s obvious when you read this site that meds can and have made a positive difference in many people’s lives. However, the book does show a lot of research that indicates that yes, people DO get better. I think that when that happens, those people drop off the radar screen of psychiatrists and therapists. So they never really do see the success stories.

This book:
https://www.amazon.com/Heartland-finding-losing-schizophrenia/dp/0571345956/ref=sr_1_1?crid=Z30A6DNPEKHJ&keywords=nathan+filer+the+heartland&qid=1566594215&s=books&sprefix=nathan+filer%2Cstripbooks%2C124&sr=1-1

is not available on Kindle, but I ordered it and am glad I did. The guy used to be a nurse on a psych ward, and he writes about all aspects of schizophrenia, and whether it even exists (as a useful distinction from other psychotic illnesses, or whether they’re really just different shades of the same thing). He is kind and sometimes funny, and I think in the end hopeful.

Finally, this book

http://www.rethinkingmadness.com/

was written by a guy who went through a brief episode of psychosis himself. You can download it for free, and he references some of the same studies as the first book. He believes that psychosis comes from the psyche trying to resolve some sort of inner conflict. It gets a little heavy duty psych theory at times, but what makes it fascinating are 6 real-life stories of recovery.

I hope all of this helps. I don’t know yet how things will turn out for my son, and he still acts a bit strange. I miss how he used to call me up, and send me funny stuff he found on the Internet. But I still have a lot of hope for him, and I think that you should for your brother as well. I just don’t think it’s true that nobody ever gets better.

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With each successive episode, my functioning seemed to worsen. That’s why I think it’s important to get treated as early as possible. I used to work in special ed after my diagnoses. But after my most recent episode my energy dropped considerably. I was in day treatment the past 4 months and will graduate in October. (I strongly recommend this program after your brother has stabilized). It’s not easy because many of us have untreatable negative symptoms. Mines aren’t too strong and I’m not one of those who can no longer take care of themselves or lost hope with life. Right now I have a part time job as a peer coach and I do feel I have my life back, largely. I have goals and friends again. Getting on meds is a process but adjusting to your new reality and getting back on your feet is another process. Treat getting treatment as an emergency. Once he recovers, encourage him to get out of the house slowly test the waters to see what level of work and functioning he can handle. Try to prevent future episodes. Usually the illness isn’t too severe if caught early. Most people at my sz support group at least can volunteer and be independent. People I meet on the web sometimes have trouble with simple things like showering or getting out of bed. They find no joy in life and are “just surviving”.

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I believe that for SZ…

Close, still on meds but functions, drives, school barely, apartment, boy friend…

Very important vid from my daughter, listen to all of it, day after ECT:

from this:


to this:

cuckonest64

to this:


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It’s really nice to see someone else who has more or less started to recover! It’s good your daughter is not isolating. It’s good your daughter can drive and live on her own. I personally am still a source of trouble for my parents. Life isn’t perfect, I guess. I got in a relationship in 2017 because I was feeling lonely, but after I made more friends I realized I didn’t need him emotionally anymore so I dumped him. It’d be nice to eventually find someone I can really settle down with since I’m already 28. I’m happy your daughter is med compliant and looks happy! :slight_smile: I haven’t watched the whole video yet but I’ll try to.

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I have to ask what you would mean by “full recovery?”

I think at least in my experience, that sz permanently changes the person that has the disease to some degree, some much more than others.

Having said that, I feel like I can call my son "fully recovered, probably at least as fully recovered as he probably ever will be. I still see very subtle improvements year by year. Nothing too earth shattering so far, but all positive. With the protocol he has been on for the past 10 years, he has been freed from the voices and the delusions and has regained the ability to care for himself. He still has some cognitive impairments and some minor memory problems and on occasion he has organizational issues (not with stuff but with “time”-- but none of it so far is anything life threatening.

His personality (that I recall from his youth) shows more frequently now, while he often still has kind of a ‘dead pan’ demeanor, on occasion he can tell a good joke and also laugh at one too. He has hobbies and interests and so long as he continues to live a relatively low stress life style I expect him to continue to stay stable or perhaps fully recovered? Not sure I can say that with confidence but I can easily say “stable” with much heart felt gratitude. (fingers always crossed)

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This resonates with me. It’s as if I’ve lived two lives, before and after my illness. I have different interests and were it feasible I would have retrained and worked a different profession. You adapt to your new self and try to integrate it to the old, but you are never quite the same.

I came across some oral history tapes recorded in my prodrome less than a year before I was outwardly ill, and shared them with a sibling who was struck by how different I was, but said I seemed happier and more at peace. Since I haven’t aged quite as much outwardly as others my age, people I meet from my high school days seem to think I haven’t changed. Little do they know…

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Recovery is possible, but I think someone must believe and understand what recovery is and it not. Recovery will not usually give you your old life back, recovery will not make you feel “fine” every day.

I grew up as an undiagnosed schizophrenic. In my teens, I was seeing a doctor, had my first hospitalization, and he diagnosed me with “psychoneurosis”. It took years of issues going in and out at marriages, jobs, etc. until I was diagnosed with schizophrenia at 36. They experimented with different med mixes for and I had around 20-30 hospitalizations.

It was in 2005 that I was introduced to the concept of recovery. I didn’t know if it was just a term strown out to placate patient’s families. I had a workbook that I began using that focused on what brought me in the hospital and all of the people who played a role. Something happened during that time that was almost magical. I started to believe that I could go into recovery. They ask me what I wanted to do with my life, and I said that I wanted to be a web designer.

I started building websites and I love what I do so much. I usually keep around 100 active clients or so, and I get to catch up on some of their lives a couple of times per week. Also in 2007, I went to work at the hospital where I was a patient as a peer support specialist and I have worked there part-time until this year. I have been in a healthy relationship for the past 7 years. Some days are a struggle, but I am happy to be alive.

Recovery is possible and I may not be a perfect example, but my life is definitely proof.

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Question about your hospitalized experience? Do you get bad reaction from trying different med so you was hospitalized so many times? Do you go to regular hospital or psychiatric hospital? What do they do to help you in hospital? My son is unmediated so I am thinking to send him to the hospital someday. Just want to find out more about hospitalization.

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I did get some bad reactions from the meds, and there were a few reactions from the med that I have taken for all these years, but I would dare not trade losing the side effects for being mentally unhealthy. There is a huge adjustment to going into the hospital. I have been in a psychiatric hospital, a hospital with a psych unit, and a regional psychiatric institution. My favorite was the hospital that offered a psych unit. I personally think it was better funded. Also, NAMI had a huge impact on my life. I went to and led meetings for 9 years. NAMI is where peers join together to problem-solve their mental health issues. It is called a NAMI Connection meeting. NAMI does not give psych or med advice, but what they do give is solid gold. “How do I go out to a public place and stay calm?”, “What should I do if I am paranoid and hear voices?”. NAMI peers can help with those types of questions in many cases. The best part about NAMI is it is free of charge. We offer several NAMI meetings where I am at, and I hope your son would be willing to try a meeting.

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I do go to Nami support group myself which I found it very helpful and supportive. My son still in denial so he doesn’t think that he need to go.

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Did you have any hallucination symptoms? Did you start your medication when you are teen? How did you manage to go to school with medication?

Yes, and I still have symptoms at times, but it does not pull me down because of meds and using recovery methods. I did start meds as a teen and my parents did not oversee my med use so I highly abused them. I got into drugs, dropped out of school, but went back and obtained a GED. The meds did not matter too much, but keeping the dosage low enough to function but high enough to help manage symptoms is the key. I could be medicated to the point I would have zero symptoms right now, but I would then not be able to function or have quality of life. My dosage makes the symptoms managable.

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Thank you for sharing your story. At least you got the strength to go through so many trials and errors which lead you to recovery today.

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I personally think, @Sisterlove, that the person you spoke to on the NAMI line gave you an awfully negative harmful opinion. NAMI is supposed to help provide hope, not squash it.

Recovery is defined as: 1) a return to a normal state of mind, health, or strength. 2) the action or process of regaining possession or control of something stolen or lost.

Recovery IS possible after a psychosis. It is NOT necessarily a full return of the state that used to exist pre-psychosis, but life can go on with a partial or full return to reality.

My daughter is in recovery and has been for 10 months now, after 2.5 years of almost 24/7 psychosis (hallucinations and delusions). She is not the same person as she was before her illness started, but she is a good person to know now: working, loving, caring, etc… almost 24/7 there is no psychosis at all. Occasional voices still intrude late at night when she is alone.

You must keep hoping and you must believe recovery is possible. Otherwise it is like giving up.

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I agree. Sometimes NAMI is little like shopping. You take what you need and leave the rest. I have heard a lot of things that if I considered the statement, it would have brought me down. I have been psychotic and recovery has been possible. I think that the definition of recovery is seeking and finding happiness in your life. It does not mean that you always have to be happy, but placing things in your life that brings you joy and removing things from your life that makes you sad. I had a roommate for a few years and the outside world viewed her as crazy because of her belief system, but she was not harmful to herself or others and she was happy and reached some of her goals. I believe that she had recovery too.

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I agree with your definition of recovery @Rodder “seeking and finding happiness in your life”. That fits in with the definition I posted from the dictionary (#1) To me, seeking some sort of happiness on a daily basis is always a move in the right direction, … a normal frame of mind.

I view recovery as a staircase: going up a step at a time is recovery. Just stopping the downward motion, is a part of recovery. Bettering a situation and hopefully keeping it stable is recovery. If there are 100 steps up the ladder from full psychosis to full sanity, going up just a step or two can make a big difference.

The “new normal” is a phrase I like to use.

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Your information is always so comforting and helpful olb…Thankyou

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YES RECOVERY IS POSSIBLE

I’ve had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If you’ll like some ideas on how to get better here’s a link to my short essay

Link: http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf

Also I have a YouTube Channel where I air my views. You must show your brother my video on “sexual conflict” because that will give him ideas for getting better I hope. Good Luck>

.https://www.youtube.com/user/caketheory

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