Family and Caregiver Schizophrenia Discussion Forum

Need advice on what to tell people. Son diagnosed with psychosis 6 months ago


#1

My son was diagnosed 6 months ago with an “undiagnosed psychosis” - likely schizophrenia. We live in the same town that he grew up in. He was very active in athletics: baseball (through HS), basketball, football, so we know a lot of people. For my son’s privacy, I’m not sure what to tell people when they ask me how he is. Today I ran into a mom from basketball. Of course, she asked - how is J … I just told her well he’s having issues with his thoughts and we haven’t figured it out yet so I’m just letting him rest and he’s living with me. She seemed concerned and said she hoped he got better. I’ve told one other set of parents that he was having “head issues”. My boyfriend and I have made up all kinds of answers - oh he’s traveling in Asia, or he’s in (another state) studying blah blah. The one I think I can use for a few more months is - he was working at ______ then it closed so he’s in between jobs right now. Any advice on how I can indirectly answer.


#2

I usually just say fine, good, or great. One person was like, REALLY? (We also live in a small town.) I said, Yeah. My fine is different than theirs.

I sometimes said things like, “not that well”, or even “terrible” once and instantly asked about someone else and/or their family. No one really pries and if they do, I say, Oh I don’t want to talk about this. What have you been up to?

Another go to: Oh, you know, they’re [whatever age they are].

People ask what they’re up to, I say, “playing lots of X-Box.” I mean, one can tell the truth without details and then every once in a while I tell someone, but not the dx and not often. If I feel like it, I might say that my family member has mental illness.


#3

I think it’s going to depend on the person and “need to know”. Perhaps I’m crazy but because I deal with confidential medical information all day long, I tend to view it through that lens. If it’s a medical provider involved in care, then it’s full disclosure. If it’s an immediate family member living in the household, I’m honest but careful and only disclose what’s necessary for safety, etc. If it’s outside family members, I will proceed with slightly more caution, usually based on what I know about that person. Anyone else, it’s on a need to know basis (i.e. school, other parents etc). I don’t think you’re lying if you say, “Fine” and leave it at that and discretely change the subject. It’s not anyone else’s business and most people don’t actually want the nitty-gritty details. You also have a responsibility to protect this confidential information from others for your son’s sake. I would especially look at it from his viewpoint of would he tell this person about his mental illness? If he wouldn’t share it, it’s probably not your place to do so. Another way of deflecting is to share something positive that has happened recently if there’s anything - such as a recent fun trip or something of that nature. If there’s none of that, a response of “fine” or “good” or “great” are all neutral and true-enough for those situations. You have zero obligation or responsibility to share more, especially to someone like a casual acquaintance. You’re not hiding anything - you’re protecting his privacy and confidentiality.

Hope it helps!


#4

My response varies on my day, who I am talking with and what I remember telling them last. Sometimes I have asked people “what was his status when we last spoke?”

At first we really did think it was my son’s immunosuppressives causing auditory hallucinations. I said “trouble with his meds” for a few years. After we found out, I advanced him to “has suffered brain damage” if it’s someone who will be seeing him, like a neighbor. Every now and then a brave or curious person will ask “how did he become brain damaged?” I will reply “the first time he told us he heard something we knew wasn’t real was the day after his surgery”. “They tell us the surgery was perfect- which we doubt” That is all true and no surgery is perfect - but is most likely a coincidence. The paranoia was there before the surgery. He had a pretty classic prodromal period.

Relatives and very close friends know now. Used to be hardly any of our relatives knew. We live states away from most of our relatives. Our son began calling them to ask for help -one of his delusions is that we are sexually abusing him - he wanted the relatives to make us stop.

If it’s been rough and people ask about him I say he is the same. Recently when his doctor told me he was “doing great” and the neighbor mentioned him setting off his car alarm for hours I said “his doctor says he’s doing great”.


#5

Head issues? Lol.
I would try to be as honest as possible. Even if it’s something like, he’s not working right now, trying to find the correct diagnosis, etc. I’d add something positive, too. Such as He’s considering returning to school…or planning a trip to Asia.


#6

I agree that it depends on the person… when it came up with my fiancé’s parents recently my fiancé said he “kind of had a mental breakdown”… and his parents just went with it and commented on another young person they knew who had had issues… it doesn’t really capture the full reality but in this case it communicated enough to be something they understood or could relate something to without having to go into the details that my brother might feel betrayed by


#7

Maybe I am too honest for some, but I am who I am. I never give up an opportunity to be honest and forthcoming about mental illness in general and how it has impacted my family. I don’t randomly offer up any information to anyone and I never discuss the issues when my sz son is around because it would upset him…but if I am asked a direct question by anybody, I give a very direct and completely honest answer. How the other person handles it is on them. If they are judgmental and start to avoid me afterwards. I am okay with that. I have friends that do understand and don’t judge. Mental Illness is far too misunderstood and stigmatized today for me not to not be honest and direct about it. After all if the illness was cancer or a heart defect or a bone disease would discussing it be as much of an issue? The brain and it’s diseases deserve no less discussion than all the rest. Just my 2 cents for what it’s worth. My best to all in 2018.


#8

The reason I don’t name the illness when I talk to people is due to stigma.

We are still in a very stigmatized time and I would be super happy if my family member wanted to let people know the diagnosis and anything else about the illness. I will speak openly if my family member chooses to and tells me that it’s okay to do so.


#9

I am afraid for my son’s safety, we live in a backward sort of area. I don’t want to get the torch and pitchfork folk stirred up.


#10

I agree with Catherine. The only way to reduce the stigma is to talk about mental illness exactly the same way as any other illness. However, it can be hard to find a way to do that while living in a society that stigmatises it. Tell those who you feel need to know (people who need to understand his changes in behaviour, the changes in your lives and routines) while of course respecting your son’s privacy. It is a medical condition after all, and not everyone needs to know about his personal health issues.
This is a tough one, as I try to advocate openness and breaking down the stigma, but you’re right Hope, there are people who react badly to this. Especially schizophrenia as so often it is (incorrectly) believed that people who have it are violent. Whereas we all know the reality is that people with a mental illness are more likely to be victims of violence.
Let the mothers of his old friends talk about their kids, which is really what they want to do. Perhaps if they ask, just say, oh you know, this and that, what about yours? And then try not to let your eyes glaze over as they regale you with their lives :slight_smile:
More seriously though, if you’re in a small community your son is more visible, so you might not be able to do this for long. You’ve written about groups you belong to; could you work together to ‘educate’ the community a little?


#11

@Sanatorium23

Now you are getting into some interesting territory. We will probably have to agree to disagree. I agree with Dr Torrey that NAMI has downplayed the violence factor in scz to give it a better image. I do agree that people suffering from scz are more likely to be a victim of violence than to commit violence - my fear of pitchfork bearing idiots is real -which is so very, very sad. Even in FtF class when a student said people suffering from scz were no likely to be more violent than the rest of the population, the NAMI trained instructor was quick to correct and say “People with scz who are on medication are no more likely to be violent than the rest of the population”.

NAMI tells family members we are “complete” when we reach advocacy. I am more interested in getting better solutions for the families who are trapped and unable to get help for their loved ones who need to be on meds before the jail system grabs them up. In the meantime, my hands are full with Jeb.

Maybe its just that I don’t make a good case for working on stigma while I am having to dodge rocks and live surrounded by security cameras, motion lights and motion sensored alarms so I can sleep at night. The other night something set off one of the door sensors and we had to leap into action to find the camera stream on that particular sensor alarm. Perhaps our bedroom will be fully equipped when it looks like one of those security guard stations with a wall of screens showing camera feeds.

But while on the subject…

I did write on my Christmas letter an update on Jeb to those relatives who we haven’t seen in years and those who used to be good friends when we lived somewhere else. I am not one of those with a lengthy Christmas card list. I have always sent out around 30 cards. Two years ago, 2015 I had said Jeb was struggling and we had brought him home. 2016 I said, we had built him his own apartment to give him some dignity and be able to help him with brain damage issues. 2017 I wrote “continues to struggle” with his “illness”. I went back and in crossed out “continues to struggle” and wrote above it “unmedicated”. I crossed out “Illness” and wrote above it “insidious schizophrenia”.

How many of these people do you think have contacted me so far? People with whom we had close relationships and knew Jeb as a young boy? Not that I expected they would, but I kind of thought maybe some of them would reach out. Maybe one will eventually. Last year one asked if sports had given Jeb concussion damage.

Jeb would absolutely hate for people to know. I observed his privacy with my family until his illness “outed” him itself. For a long time I believed that we would be able to get Jeb on meds and he would return to his old life. There are people who have scz and are back out there living their old lives. It happens.

Jeb would say I have been way too honest already and he doesn’t have to be the poster boy for solving stigma.

He would make a really good poster person. He was a handsome man, athletic and smart.

This has been a nice distraction - thanks!


#12

I’m glad it gave you a distraction. I didn’t mean to imply that you needed to battle the stigma. Like I said, I try to be open, but I can’t always be either and it sounds like you’re really not in a position to be. Regarding your group I was thinking about how some groups try and raise awareness, absolutely not suggesting your son would be involved.

Am happy to agree to disagree. I do think though that the common media portrayals of the illness lead to the belief that people with it are randomly and unpredictably violent. I understand your position completely as you are experiencing violence.
That’s what it comes down to though I guess, our experiences of the illness.
(Trigger warning here; I’m briefly describing my husband’s paranoid delusions) I always have in my mind the explanation my husband gave me for why he was always carrying a knife with him (he also kept one in the car, which I was unaware of until a meat cleaver rolled out from under the seat). He told me that he would never want to hurt anyone but that ‘they’ were going to kill him. The voices had convinced him that the whole world was basically created to torture him and there were people waiting outside who would kill him. They could come at any time, be any one, could read his thoughts and change them. He said he needed the knife to protect himself, and if he had to be killed he wasn’t going down without a fight. Luckily he didn’t hurt anyone, but got close a couple of times as he thought they had come for him. He saw this as self defense. But, yes, the end result would have been violent.

He is not violent with me, friends or family. I’m sorry that you are experiencing this with your son. I guess I support advocacy as if it was to actually eventuate there wouldn’t be people trapped, they would be treated and regarded with dignity and compassion. That’s my little utopian dream.

Really good talking to you.


#13

Hope,

Sorry another little add on…I meant to say I’m sorry that none of your friends and family you wrote to have reached out. As you said, you didn’t expect anything, but that’s deflating. Do you regret writing it now? Also how did it feel to write ‘insidious schizophrenia’ in the letters at the time?


#14

And good talking to you as well - The experts say the best indicator for violent behavior is violent behavior before the illness. My son was not violent, but he would defend himself if attacked. Like many people with scz who suffer from the paranoia side severely, they are usually only dangerous if you approach them. They can become frightened and see it as a delusion coming true.

Your husband delusion sounds like my son’s reason for buying guns in the past. He said he needed them to protect himself from the people who were trying to kill him. I think my son sees himself as fighting back against the abuse he believes we are raining down upon him. Poor guy.

I don’t regret writing it on the Christmas letter. I am a little hurt that no one contacted me. In particular, two longtime friends. When I wrote it I felt like “well, here goes”.

My dad was fond of breaking bad news gradually to his children. My first memory of it was when a beloved dog was sick and Dad took it to the vet for care. Dad would give updates when asked about the dog’s condition. The dog slowly worsened and eventually passed away. As you grew older you became aware of the reality when you saw the methods used on younger siblings when beloved turtles and fish were “taken to the vet” by Dad.

My Dad kept a calendar next to his seat at the kitchen table. He would jot all kinds of notes down. When we were older, one of my brothers came down with a flu and to track exposure (6 kids) my Dad wrote down “Bob sick” on his calendar. Upon seeing it, my brother Bob made a huge fuss -all in fun- saying “No way will I let Dad take me to the doctor!”

So in my family’s vernacular, I had “the dog is sick-ed” Jeb’s illness in my Christmas cards.


#15

I agree with you 100% on this. Also to get help to families like yours whose family members are living with terrible symptoms of illness for months and years on end. These are the priorities, imo.


#16

I understand the difficulty. I am terrified of running into anyone I know who knows my son (rather, who knew him when he was well). Unlike everyone else his age, he was unable to go on to college (he graduated H.S. in June, which is when he began rapidly decompensating) or even to get and keep a job…and this was a kid who worked diligently every summer since he was 15.

I have no idea what to say. Once I said he’s taking a gap year (very common in Europe, and his dad is European), but most young people who take a gap year are either traveling or working. Thank goodness there wasn’t a follow-up question. I really am at a loss. I want to protect his privacy, as he has the right to that. And, no, I do not want to add to the stigma, as I think it is one of the most horrid things about our society (and perhaps other societies), but until he is diagnosed, treated, and on the way to wellness, I want to protect him. It’s a tough spot to be in. I wish I had answers for you, but unfortunately, I am experiencing the same dilemma.

BTW, regarding stigma, I wish to heck we would all start using the term “brain disease” rather than “mental illness.” There is voluminous scientific evidence of this. The brain has been afflicted with a disease. Period, end of story. Why can’t everyone on the planet get this through their heads? (Please excuse the bad pun.) Once my son is on a path to wellness, I am determined to become an advocate for transparency, eliminating damaging labeling, and getting this elephant in the room banished forever.


#17

Hope, my son also thinks someone has shot at him outside our home twice and firmly believes it while unmedicated. When he takes medication and is stable, he never mentions it.
I am so hopeful that Jeb can get on something that will help him and that both our young men would find the right meds that help them. Good night and keep us posted.


#18

Duly noted. I can do brain disease.


#19

How is your son doing today? We woke up to mine being gone. We believe he has gone to look for another place to live.


#20

I do tell the people who don’t know him and my friends/some family who do. I am hesitant to tell the parents of the kids he grew up with in case he gets better. I don’t want them to say - hey your mom was telling everyone you had schizophrenia. So, I’m trying to hold off on that for a bit. I have told a few. Mostly, I say he is having issues with his thoughts and we’re trying to figure it out. My son was a good worker as well. I didn’t have to push him to work, he just went out there and got the job. Back then I was like well I guess I won’t have to worry about him working! Ha!