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When you find out the psychosis wasn't drug induced after all


#1

Hello
Last May, i posted here for the first time after my son first got hospitalized due to a psychotic break.

At the time, there was some question of whether it was drug induced.

At this point, it is clear that it was NOT drug induced. My son still experiences symptoms on a regular basis, even while on antipsychotic medication. He is one month away from a full on sz diagnosis.

There is no other way to describe what I’ve been through other than hell on earth. To see your beautiful healthy child lose their mind is not something I would wish on my worst enemy. Nothing has ever tested my own mental stability the way this has.

I am returning to this forum now, knowing that there are people here who get it. In my personal relationships I have found that this is a taboo subject and NO ONE wants to know about it, let alone talk about it. Those of us with afflicted family members suffer in silence. Well meaning friends and relatives say things that are inappropriate and misguided. In truth we live isolated lives.

To all those who have a close family member affected with sz, I just want to say, I get it. It’s major. Love to all of you.


#2

So sorry JooJoo, I know we all hoped for you that his break was drug induced or a one time only psychotic episode.

No one does want to talk about it, people even behave as though they are embarrassed for me that I am talking about it -as though I am bringing up a subject that isn’t proper conversation. Many seem to want to conclude the conversation rather quickly, even people I have known for a long, long time. They say they are sorry about Jeb, wish me well, and get on with their lives.

Sometimes I can really empathize with the family members that walk away from their loved ones with mental illness. I am stuck in my son’s scz world as firmly as he is.


#3

Hi Joo Joo. I remember your earlier posts that expressed your hopes that your child’s symptoms were drug induced. We had those same hopes about a year and a half ago for our boy, but we got our diagnosis about a year ago. Since then, his illness has led to 2 additional month longs hospitalizations, multiple drug trials that have had limited to no success, and destroyed relationships with most of his extended family. He has no friends, no job, and no future aspirations. I grieve daily and I imagine I always will. I’m so sorry this has happened to you…


#4

I know, JooJoo, close friends and family never ask or bring up my son"s illness. My siblings and his cousins act like him and his illness don t exist anymore. They never ask why he doesn’t attend family get togethers or call him or me to inquire about his health. He used to hang around with all the cousins and be such a funny kid at family get togethers. I don t talk to many “friends” anymore as they acted like my son was faking or did not understand it. I work part time and no one ever asks about my son anymore, I used to talk about it a lot when he was first getting the disease, but now I don’t bring it up because they are not interested and I can see it makes them uncomfortable. Only one women I work with gets what I am going thru because her late husband had PSTD psychosis later in life from Vietnam. She is always so kind and we have such a connection, even tho we don’t work together much. It is such a sad feeling all the time when your child has this, I just try my best to be strong for him and put on a good cheerful front for him. So sorry you and your child have to go thru this, but we on this forum know how it completely changes your life and breaks your heart.


#5

It is so obvious how uncomfortable the average person is when confronted with this subject. Usually they try to change the topic as quickly as possible, and I have found that this is usually a good idea.

They also often want some kind of quantified response - that there is measurable improvement of some kind - so sometimes I just say ‘he is doing better’ to appease people because if I say things are pretty much the same, they see it as a failure of some kind. Some even try to give me advice. They are well meaning but so, so misguided.

The other troubling thing is that my son, himself, does not like me to say there is any improvement, that he is doing better, or anything of the sort. He has finally started being honest with me about his symptoms and I know they disturb him deeply. I am so afraid he will lose all hope.

My brother-in-law owns an equipment business so he kindly offered my son a part-time assembly job. He just shows up and puts parts together. Doesn’t have to deal with people or learn anything difficult. He’s only been at it about one week but so far it seems to be going all right. It is the first time since last May that he has left the house regularly. Until this job, he has mostly been in his room 24/7 with little to no contact with anyone except immediate family.

One of the most challenging things for me is to put on a happy face for him when inside, my soul is just crushed all the time. I want to burst into tears but I can’t. One time I actually did and it didn’t go well. Now I have to stay in control.

It feels good to know that the people reading these words have experienced the same or similar. Thanks for being here!!!


#6

It is good he got the job, it good for them to get back into the world. One of the goals my son has with his caseworker is to get a part-time job. Hopefully he will feel ready soon. It is so hard not to show our son’s how sad we are, but I think I am getting better at it after 2 and a half years. Then I have days where I feel I a. back to square one and just want to lay and sob all day. Then I remember I have to be strong for him. Hugs to you and your son.


#7

Joojoo, I know exactly how you feel. I thought it was just me. I sometimes get angry with family members because they don’t even ask how my son is doing. As a matter of fact some family and friends avoid me all together. I try not to talk about it to them so that I won’t be totally rejected. I feel like I’m in this all by myself. It breaks my heart to see my son sit on the couch and eat all day with no connection with the outside world. I’m so glad that I can express. My feelings to the members in this forum.


#8

I’ve heard it described as like a death but there is no funeral. I think people just don’t know what to say. I can’t remember the last time someone asked about my son at family gatherings or church. In fact, I attended a wedding in another state and no one asked about him the entire trip. When I mentioned this to one of my siblings, she informed me that perhaps they were trying to spare my feelings. They knew how disappointed I as that we couldn’t go as a family. I guess people are doing the best they can.


#9

Some of the sources say our grief cycles with the cycles of their illness. Each time they have a bad cycle, we grieve the loss of their former selves all over again, each time they have a better cycle, we have hope once again.

Our grief for our family members with scz is never-ending and unacknowledged. Like normal grieving, we get better at living with it as time passes.

For me it helped when I realized that my son is still there even when his psychosis is overwhelming him.


#10

I can’t say I have had this negative experience. When my son was first clearly psychotic and when he was detained under the Mental Health Act and ever since, my family and my friends have all been willing to hear about it and talk about it. My mother has been fairly unsupportive about his inability to work (which revolves around his avolition) but I just shut that down by pointing out that it is part of the illness (he doesn’t get his dopamine reward, I believe) and that was it. Beyond that minor point, I think people have responded pretty well. It probably helps that they know he has never drunk alcohol or taken drugs (people DO like to blame people for their mental illness) and he is quite well recovered. He always presents as “normal”. Some people are still offended by his “withdrawn” phase and don’t quite understand that, but that kind of stuff happens to people without SMI too.


#11

We thought the same thing - and frankly hoped and hoped that it was drug induced psychosis. When he passed the six month mark and recieved the schizophrenia diagnosis, it was a very sad day. I think we all hope it’s just a temporary situation, but it’s not. I would never wish this on anyone either. It’s truly a horrible disease and basically a torture for everyone involved. Slow and relentless. I have found that people are in two camps - either completely ignore it and never acknowledge or ask about him or the disease, or they do ask, and they just honestly don’t know what to say to comfort. Many people do truly care but it’s a very difficult thing to understand if you aren’t going through it. It’s hard enough for people directly impacted by it to understand - the most difficult thing for me to understand is why my son doesn’t see or understand he has this disease. If he did, we could treat it and get through it…seems so simple but it is so not! It’s a special “club” only some of of us get to be members of…


#12

Yeah I hoped and prayed it was drug induced. That seemed SO much easier to accept. The scz diagnosis is close at hand - about a month away. I’m just waiting for it. Nothing surprises me anymore. I’ve come a very long way since my son’s first night in the psych ward when I broke down and sobbed on a sofa in the hallway and had to be comforted by one of the therapists. I am not one to show that kind of emotion in public, like ever. I just completely came undone that night. It was traumatizing to see my son lose his mind.

The one good thing for our family, though, is that my son knows he is ill. He is med-compliant and tries to do what is suggested he do. I feel fortunate and I know this is a huge blessing. But as I said in the post above, he WILL NOT discuss anything regarding whether he is getting better or not. I think it is because he is still disturbed by his continuing symptoms and very afraid of not being able to trust his mind.

I feel for you having to deal with your son who doesn’t have the capacity to realize he is ill. I can’t imagine what that is like. Undoubtedly it makes a tough situation so much tougher. Bless you for facing this.

So nice to be able to share our REAL lives with other people who understand.


#13

It’s a little different for me now. When my son was first diagnosed he was aroun 26. We’ve been through so much, more for him than us. He told me more than once he just wants his life back. I’m very bull headed and have been making everyone know my son has a serious illness… If I feel I want to talk I do. Most of the time if they are your friends they will listen as well as become educated. If not see ya I don’t need people like that in my life. Yes you need people that know the illness just to talk with, listen to, it’s so helpful. My son is now stable and right now he’s doing great. Tomorrow maybe different. But this sight is a steady helps me by reading other people’s difficulties therefore I’m not alone


#14

@Hope - That is what I told myself about my mom when she had alzheimer’s. Most people said how dreadful it was, but I thought, she’s still the same Mom underneath it all - she’s still in there.


#15

My feelings switch back and forth regarding other people ignoring the problems we have . Sometimes I feel a little militant and will talk regardless. Other times I just go along with acting like nothing is wrong. I have learned not to get so angry about people who give misguided or outdated advice. I remind myself if they are bothering to give any advice it shows they care. It is our responsibility as caregivers to bring these issues into mainstream attention and not be shy to introduce topics that are disagreeable to some.
We deal with ongoing grief which eventually just becomes part of who we are as people - broken but beautiful!


#16

I had an old friend and her husband just stopped in on their way home. She asked about my son and I prefaced it with “i don’t know if you know anyone with this diagnosis”, she quickly said yes I do. I told her it isn’t optimal but could be so much worse.
I don’t ever go into details anymore with people because I would’ve want people talking about me if I went off the deep end. The details might be exciting but they really aren’t necessary to tell people who have no understanding of this illness.
You guys here are my main support system and I appreciate each of you so much!


#17

Thank you for sharing. I needed that. Our daughter, 30, has schizoaffective disorder and we went to a family gathering last night. It’s so true that no one wants to talk about it, and if they do they say inappropriate things. At one point my niece said (referring to our daughter) “so what are the demons in her head telling her?”
I had to correct her (very emphatically) and said “they are not demons! They are just voices” but people just don’t understand!
It’s so sad. It’s a lonely place.


#18

It’s just ignorance and you handled that beautifully. I hope you have a good day there! This is the last warm day we are supposed to get.
Yesterday we bundled up my sons dirty clothes bedding and towels and headed to the nearest laundry mat for a life lesson; I learned that it take 12 quarters for those triple washers and ended up bringing most loads home to complete drying. There is a reason they have $20 change makers🤓
Anyway we ended up walking up to get an ice cream and soak up the sunshine and he got to flirt with a couple of girls.


#19

I too have had great support. My friends all huddle around me. We all joined NAMI created a walk team and raised a bunch of money. And everyone started talked about the mental illness in their family. A lot can be done to erase stigma but not remaining silent. They all saw the struggles my grandson went through and they gave all seen a recovery. He is back to work and enjoying his life again because everyone made him fell ok and I thank all my friends every day


#20

Very comforting to read your stories and feel that here are people who know it like it is.
Yes for me too some friends have disappeared. Family was never much there anyway. But other friends are brilliant and listen and ask and comfort. Yes, sometimes they don’t understand and I feel upset but I try to tell myself they are at least trying and that I didn’t understand either, before my son got ill.
My son has insight and is on depot at his request. He has just played tennis tonight and he has a commission to write an article in a good journal. But whilst he did work, each time led to relapse and now he’s unsure if he can hold down a job.
Heartbreaking as he is so academically clever but equally so unable to manage the ordinary stuff of life without my help…