Family and Caregiver Schizophrenia Discussion Forum

The day my sons disease threw a hard punch


#1

My son was diagnosed with sz and bpd at 19 yrs. That was a difficult for us both! Then, several months ago the dr made me sign a now "mandated " form stating that he has sz and could possibly be a harm to himself or others. It also stated I would not allow him to be around any kind of gun and that they could not be held responsible for his actions. Also, that he would not ever be able to completely recover and will need constant supervision.

I know this form is just to protect the clinic, but as I signed the form, the weight of all the stigma attached to people with mental illnesses and the fact my son fits into that category weighed heavy on my heart and all I could do is make it to my car and cry!!


#2

What?!?! I do not understand this at all. Who is this doctor to see into the future that your son will always need constant supervision?


#3

Unless the doctor is extremely good otherwise, I think I’d be looking for a new one.

I would also ask who mandated it. Your state? their insurance company?

It’s asking you to accept liability for all kinds of things that I don’t even think the clinic would be liable for.
And, at 19, who’s to say they won’t find the right treatment for him & he won’t recover?

I think I’d be sad like you are, but I’d be mad too. It just sounds wrong.


#4

You have to be careful about assuming people have a stigma about mental illness. The new research is showing that about 20% of the population has, or has had, some sort of mental illness (anxiety, depression, BP, Schizophrenia, etc.) - so virtually everyone knows someone with a mental illness. Most people I know have nothing but sympathy for people with a mental illness. The world has changed from 20 years ago. Obviously some people still have very outdated views of mental illness. But to assume everyone shares these outdated beliefs or opinions is just wrong. You actually harm yourself and your son if you assume stigma is everywhere. You don’t do things or try things when you think everyone will be negative and against you.

Don’t worry about it so much. As many people on the diagnosed forums will tell you - there are many caring, compassionate and knowledgeable people out there.

Every year, about 42.5 million American adults (or 18.2 percent of the total adult population in the United States) suffers from some mental illness, enduring conditions such as depression, bipolar disorder or schizophrenia, statistics released Friday reveal.

The data, compiled by the Substance Abuse and Mental Health Services Administration (SAMHSA), also indicate that approximately 9.3 million adults, or about 4 percent of those Americans ages 18 and up, experience “serious mental illness” – that is, their condition impedes day-to-day activities, such as going to work.


#5

I am employed by a behavioral health practice, and work in our residential care facilities. Each of our clients and their caregivers/guardians have to go through similar forms, and from what I’ve seen it is very hard on the families and our clients. There is something about having to read the clinical reviews and legal impacts such disorders have that really hurts. It’s hard on our clients to read their treatment plans, or go over plans the agency has if this or that happens. It’s my belief that it’s because a piece of paper offers no empathy or support, and the language is so formal, clinical, and legal. It’s cold, and it is not forgiving, but as you’ve said you understand why it is happening. It seams to me that this encounter felt like ‘sealing the fate’ for your son, and made the reality of his diagnosis overwhelming. I’m sorry for your son, and feel for you and your family. It may even feel like you’re saying goodbye to your son, but know that no one wishes to give up on supporting him.


#6

It’s just so they don’t get sued and has nothing to do with you or your son as the real and wonderful human beings you are.


#7

Sorry @SzAdmin maybe stigma was the wrong word. But in my neck of the woods bi polar and sz along with bps are not looked upon nicely. Almost everyone I know thinks he is faking it. Over exaggerating things. Trying to get attention. Or, here’s the best one, “getting money to sit at home on his rear end and its my hard earned money that’s paying for it!”

Yes more people are starting to understand these diseases, and that is great news. But here, where we live, its still a battle!!


#8

Thank you @JLynn for your kind words and understanding!!


#9

@slw dr said it was state mandated. He was diagnosed when he was 19. He is 31 now. His condition has not changed. I guess I had to sign this to prove that they had advised me of his condition and made me aware of his mental state.

I get so angry sometimes with people!! My son rarely leaves his house bc of his sad. And on the few occasion I am able to get him out, I see the looks and stares he gets, I see the people purposely go the other direction to avoid him. If they only knew how much courage it took to get him out maybe they would be more understanding!

The reason they react this way is bc with bpd’s they have identity issues. So over the course of the last 12 yrs he has got tattoos, piercings, wears weird clothing, dies his hair almost everyday and then shave it off! Lol! Wears sunglasses all the time bc he thinks no one can see him with them on. The meds he takes makes him shake alot and he has slight tardive dyskyinesia. Sometimes he will paint his fingernails black. I mean the list goes on and on. Constantly trying to morph himself into something or someone that feels right to him. But again, with bpd that can change in a moments notice. Anyway, I just want to scream sometimes bc if he catches them looking or whispering then he is crying all the way home saying he’s never leaving the house again!!

Its really hard for both of us but I know it’s worse for him!


#10

Several des have told me his mind is stuck at about age 12-13. So, that’s all I have to go on. Plus the fact that he lives 100yds behind us and still needs my help and freaks out whenever he can’t reach me.


#11

My son has social anxiety & general anxiety too.
He doesn’t have any tattoos, but wears the hoodies & sunglasses, and he’s started shaving his head because he thinks he’s going bald.

I don’t really see anyone stare at him or avoid him - but, he thinks they do. And thinks they’re all saying something bad about him.

If I see anything bad happen, and I can get away with it without making it worse for him, I’m all over them to the point they probably think I have mental health issues too.

As far as stigma, if anyone asks me or it comes up, I just tell it like it is. I refuse to treat it any different than any other health problem. Some people are sympathetic - most in fact - some people stop asking, and that’s OK too.


#12

Well my son is going bald and he is so self conscience of it that he actually"paints" hair on his head using mascara and hair gel! Bless him!! No matter how hard I try to tell him its ok to be bald it hasn’t made a difference! He said he does it for himself to make himself feel better. So I’ve learned its not that big of a deal if that is what it takes to get him out of the house!!


#13

My son has filled in what he thinks is thin with pastels (like chalk) from his art supplies before.

He’s way too young for any thinning hair based on both sides of the family, so I’m thinking it’s a med side effect to be honest. And, he doesn’t have an actual bald spot, he’s just a little thin at the crown.


#14

That is so terrible. Do you ever feel like your emotions are tied to your sons. When my daughter hurts, I hurt. She was also diagnosed at 19 and she is now 28. She is similar. Not long ago she shaved her head, again. She’ll wear heart shaped sunglasses as if to hide. She’s started buying wigs - her favorite is bright blue. We took a trip to Asheville, NC and she received a lot of positive feedback from her wig. She feels that the wig and sunglasses show she is quirky so she can act quirky. Kind of like people act differently wearing a mask. She felt she could be herself there because of the diversity of religion and cultures. She obsesses about Marilyn Mason and devil worship. She sometimes says the devil is her best friend. She bought a Marilyn Manson blanket and cuddles with it. Sometimes she’s childlike and is hurt by people who she perceives as hating her. This can be family or strangers. She thinks the government knows her and is watching all the time. I’m so glad to be able to hear stories that compare with mine. Although many people are aware of mental illness because it is not hidden away, people make many assumptions which aren’t always true.


#15

@Sheyelo I am so sorry for what you and your son are going through…


#16

My heart goes out to you and I’m glad you are here to tell your story. You have experience many of us only dream about. What will happen at 25? 30? Tonight? Tomorrow? Will he be able to keep that appointment? You both have survived and come through a lot. I hope things improve for you and every family here and we can all enjoy the journey a little more along the way. I don’t understand the form and would ask questions. It seems odd but I remember having to sign away my son’s right to have a gun at his guardianship hearing and it sounded just as finalizing. Have a good evening.


#17

Yes I do feel like my emotions are tied to his. We seem to reflect each others. I have learned over the years to try my best not to do that bc it feeds on his already unstable mind. I always listen to him and encourage him to do things. For instance he wants to go to school to become a meteorologist. Well I know that is not going to happen but I encourage him to do the online classes anyway and listen to his far fetched dreams. When he is angry or feeling like no one likes him bc he can hear their thoughts I simply listen and repeat back to him what he had said to me. Most of the time all they want us to be heard and to feel like they are understood. But it had taken me several years to be able to do this and also develop a thick skin when it comes to his tongue lashing. They always lash out at the person they love the most.

It must be very hard for you watching her involve herself in the Marilyn Manson and devil worship you mentioned! My son went through a period where he was into Wicca but thankfully that has passed! When he is not on his meds he states he sees demons and they scare the heck out of him! On meds he says they are still around but he is able to ignore them and realizes they can’t harm him. Looking back, as a child he always talked about a monster that he saw everywhere. In second grade he drew a pic of this monster. Fast forward to today, he is very artistic and loves to draw. But only does it when he is off meds. I was cleaning out some stuff the other day and ran acrosS this pic again and burst into tears. It looked just like the ones he draws to this day! My heart ached for him knowing that he had been dealing with this since a young child!

I’m learning from this forum that alot of what my son does is common and it gives me comfort knowing that “this to shall pass!”

I hope your daughter has a good psychologist she can confide in and one that you can communicate with as well. It has taken quiet some time for us to find this combination but we finally did and it really does make a difference. God bless!!


#18

You can’t imagine how much better this makes me feel just knowing my son isn’t the only one who does this! And I had never thought about it being a symptom of the disease! Thanks for making me smile today!

That’s what it’s all about… Helping each other deal with the real issues we and our lives ones are dealing with, learning new ways to cope and helping each other laugh when we can! Laughter is like medicine for your soul!!


#19

My son saw a demon outside his bedroom door when he was around six. It’s uncanny to see the similarities, isn’t it?


#20

Yes very much so! Only wish I knew then what I know now!!