The advice from well meaning people is overwhelming


#1

This is what I hear from people: “he must be a drug addict”
“He’s definitely demon possessed”
“You have to accept this”
“What part of this is hard for you to accept?”
"Your best hope is to get him institutionalized"
It has been less than 2 months since I have I have “accepted” that this is schizophrenia and about a year since he has been displaying symptoms.
He is homeless thousands of miles from me. The only contact I have is frim his instagram account.
"Maybe you should go a week without seeing what he’s doing on instagram"
The advice really is overwhelming. A simple “it must be tough” would work a whole lot better.
If this was cancer would it be the same way? It just feels so sad and I can’t quit crying.


#2

Here’s some more unsolicited advice.

Ask them what they would do if it was their child? If they would be any different, or do anything different.

I’m sure they mean well.
Of all the things I’ve heard, the one comment that bothered me the most was a co-worker who would say I must be a really strong person to deal with it - implying that most people would turn their back on their own child in the same situation, something I don’t want to think is true.

That’s when I got the idea to put the person in my shoes.

I finally told her that it’s not that I’m any stronger than anyone else. When it’s your child, you do what you have to do because you have no choice. And, ended it with, I’m sure in my position you’d do the same.

I’ve been in this for almost 13 years, and every time I think I’ve accepted things, it all changes - and I have to find a new level of acceptance. It’s more than a moving target - it’s a constantly shifting reality for all of us.

But, we are strong people. In it’s own way, this is much worse than cancer, or even the death of your child - if you get through this, you can get through anything.


#3

No, it would not be the same way if he had cancer.

There is much less support when a family member has severe mental illness.

There are people who understand what you and your family are going through. Many here on this forum. There are also in-person family support groups from NAMI

https://www.nami.org/Find-Support/Family-Members-and-Caregivers

and other organizations.

I am sorry your son is homeless and ill thousands of miles away from you. It’s terrible for a parent not to be able to help or to be near a child who has a serious illness.


#4

I have heard many of these too, and thought I could just let it go but they do keep creeping back in. No one can “judge” anything that your loved one, or yourself does or thinks. They have no right to until they have walked in either of your shoes. Some of those people, I have pushed away, especially if they continually feel the need to give me this unsolicited advice. Just know that you have done everything in your power to help, and neither of you chose this illness. You have enough to deal with without judgement added on!


#5

So sorry…its truly hell seeing our loved ones suffer and not being able to help. Im crying with you.


#6

Great advice. Today I hosted an impromptu cookout for some friends that I walk with. They brought their husbands and brought their adult children which are a little older than our son. Guys I just let it be and the day was fine. I think they think he needs to be around people his age. As long as they are respectful to him, I will continue to invite.

I liked the comment from someone here that they only saw people who accepted their son. I might have found a few. We had a really good day and it was good for all of us.


#7

I tried that approach many times, maybe Ohio has a few more cold hearted folks than most, I hope that’s not true, but so many people when asked what they would do if they had a grown son with this illness and and all that comes with it, said they would ‘cut their kid loose’, ‘sink or swim’, ‘make it or break it’, so on and so forth and I was so appalled at the callousness. One woman who preached this to me had twin sons, one okay and one very ill, I met her at a NAMI class, and we started having coffee on occasion afterward, she was so proud when she said to me, she cut her ill kid loose because he was too stressful on his twin, too disrespectful to her and her 2nd husband, and wouldn’t stop drinking and doing drugs, stole from her, lied, was non compliant, etc etc…this was 2 weeks before his 18th birthday and she was adamant that I should cut my son loose too, immediately, and live my own life and stop being so “codependent” (yeah right!) I told her I would never do that because my son was not to blame for what he was doing when he was unstable and using and I would continue to stand by him regardless…1 week later her ill son successfully took his own life, I saw her one more time mainly to offer my sincere condolences and she was almost flat affect and said “he made his choice”…there are people in the world like that and I for one am glad there is a large part of us who are not. I think our kids and other loved ones are very grateful for us and our loving tenacity in one way or another. I think some people will just never understand.


#8

It seems overwhelming because it is overwhelming. There is no shame in being sad and crying. We all have been there. And yes, if it were cancer you would hear the same type of replies.

Sometimes people mean well but you know it is really hard to sound intelligent when they are speaking with a foot in their mouth.

That is why this forum is helpful because you “hear” from people who really understand the struggle. As for the rest, well I chose to politely ignore stupidity, because you can’t fix stupid. Hang in there.


#9

I also have co workers and friends and family act embarrassed if my son s illness comes up. Here are come of the things I have been told, " He s doing for it attention and to control me, He is on drugs, He is lazy and I should throw him out of my house. He contributes nothing to the world, I need to cut him loose and he can see if he can make it on his own. I truly believe these kind of people are too ignorant to understand the concept that someone can have a mental illness. The only way they can possibly understand is if it hits home for them. Now I am very selective on who I discuss my son s illness with. You really have to feel sorry for people who have so little empathy and have no problem making everyone feel bad with their cruel comments. Just ignore them.


#10

People who don’t live in this hell have absolutely no idea what it’s like or how to react or what to say. Most people would probably like to say “the right thing,” but it’s just simply not possible! The comment that irks me the most is, “Well, at least he’s alive. There are people who have lost a child to death.” I do feel awful for those who have lost a child to death, but it’s NOT the same as losing a child to schizophrenia. It’s just not! There are MANY studies on the type of sadness, sorrow, grief associated with the phenomenon of losing your child to serious mental illness. These studies say that what we feel is even more intense than an actual death! Hard to believe for those who aren’t in our shoes.


#11

And also, you know, when someone has a child with cancer or a child who has died, they get all kinds of support from friends, family, complete strangers, but we don’t get that. We are alone in our utter, never ending sadness! No, we won’t “get over it.” This is a death to us! Our children are alone. Their old friends have disappeared. They don’t have and most likely never will have an intimate relationship or a job, won’t be driving a car ever again. And I’m not even talking about the poor souls who are unmedicated, homeless, so sick in psychosis that they don’t even know their own name! I’m talking about the majority of people who have schizophrenia who ARE medication compliant who still do not drive, have jobs, friends, hobbies, relationships. This isn’t the medication. This is the illness! I don’t bother trying to get empathy anymore from people who don’t know! That’s why forums like this and FB groups are so important and NECESSARY to us. My son is 29 and has paranoid schizophrenia. You wouldn’t really know it by looking at him. At first glance he appears completely normal, another reason why it doesn’t seem all that serious or sad, but spend a half hour with him, try to make conversation.


#12

Did you know Ohio has more people dying due to prescription opiate abuse than any other state?

Maybe their attitude is why.

I’ve known a lot of people who’ve had drug problems in my life. I don’t view it as a choice so much as they are looking for a way to medicate away their pain, whether something bad has happened to them or they have a mental illness.

And, an addicts brain is wired differently from a non-addicts - from birth I think.

My son inherited his addictive tendencies from his father’s side of the family. If I was blessed with anything, it was a brain that can’t tolerate drugs very well. The opiates that make my son so happy and peaceful make me very ill. For now, he’s not doing any strong drugs like that and I hope he never does again - although, if he had his choice, and a supply, I know that he would.


#13

My answer to those comments is that if it were true, my son would be a lot happier than he is.

He wouldn’t sit at home all day, all night & be miserable.

People like that always find a way to go out & party with friends at times - they aren’t scared every minute of the day.

Actually, I don’t get a lot of these comments - I have a feeling people know what they’d hear back from me and just don’t go there. I’d end up telling them exactly what I thought of them & their opinions - it happens now & then. It doesn’t get me anywhere or change anything, but it sure feels good while I’m doing it.


#14

Yes, I am very aware and also grateful my son’s drug of choice was not opiates, although if left alone today with access to his money it might be a different story. I know addiction itself is another form or facet of mental illness, ‘a different wiring’ as you said…I wish publicly that was understood. I’m like you, no tolerance for drugs, my drug of choice would be carbs.


#15

The sad thing for me is that the opiates took away every noticable trace of anxiety & psychosis for my son.

So, it’s very hard to see him find a solution and have to give it up because it’s not sustainable.

In his shoes, maybe I’d choose addiction over constant fear too.

My husband is kind of odd. He has the addiction thing going too, but he’s got a weird ability to stop anything cold turkey. Sometimes, he’ll go back to it years later. Sometimes, he’ll never touch it again. At one of his low points, well before our son became ill, I asked him why. I was expecting him to say how much he enjoyed it even though when it was all over sometimes he’d feel extremely guilty about it even without any badgering from me.

His answer surprised me - he said it was because for just a little while he didn’t have to think about anything, or remember anything. I’ll always remember that whenever I think about drug use - it’s definitely not recreational for most people.


#16

Mom2 - That is awesome! When one of us has a little victory in this, I think we all celebrate. Sounds wonderful. I wish, hope and pray this continues for you and your son.


#17

That’s such great news to have a successful impromptu cookout! Yay! We really can’t know the end of this story.


#18

Thanks! I’m hanging!


#19

I just joined this group and you guys already feel like a lifeline. I’m at a coffee shop reading these wonderful comments. Thank you for your support!


#20

I know I have to accept this but I just don’t want to. It feels like I’m giving up.