I have sz, and my son has sz, and I haven’t even told one of my previously closest friends. Partly because when I told her my son is gay she proceeded to tell me all the probable reasons for it…wow. I didn’t talk to her for about a year after that. Now, we’re aquaintances, not good friends, and I don’t know if I’ll ever tell her. People who are ignorant but make an effort to learn are worth the time, but people who are educated but choose ignorance as their comfort zone are not worth the time. I wish you and your son the best.
Some people are just assholes. You can’t do anything about it, except hope that some day you can tell them to their face they are assholes.
I don’t think you have to explain to everybody. I mean my close friends know that my son has schizophrenia or a close diagnosis, but I don’t tell colleagues or people I don’t know well. Partly because it just isn’t relevant, and I am not looking for sympathy, but also because it isn’t the main thing about my son, and because it is his business to decide who knows.
But even amongst my close friends I had to have some calm discussions about what it means and how it should be treated (and no, we’re not going the “find a demon doctor” route, thanks, ladies). I mean, how much did you know before your son was diagnosed? I think I was just as ignorant as anyone else, and I would never have learned how very treatable it is, had my son not developed it. Let me spit out the truth here. Before my son was diagnosed my idea of people with schizophrenia was completely formed by the “red tops” - I though they were all old, shaggy haired, homeless, drunks and addicts or young gun-toting mass killers. Really, I am not kidding. I though at first that was my son’s destiny. I wailed, I cried, I railed against fate. For about three days. Then I put on my big-girl panties and googled it to see what I could do to help him. Then i quickly discovered it was nowhere near as tragic as I thought and it is immensely treatable.
Having said that, the fact that I have discussed it with a group of friends has been a “learning moment” for us all as a community. We have a regular meeting of a women’s group, and new women arrive regularly. And wouldn’t you know it, just when my son was diagnosed, a new woman turned up, who also had schizophrenia. I didn’t know but I got on really well with her. She told me one day in private, and I said, “Oh, my son’s got that!” and so we discussed it a bit, her life, her treatment, etc. She got much more treatment compliant, she integrated really well into our group. In fact, she is not at all socially withdrawn. If anything, quite the opposite. She is very friendly And she is very, very popular now. So, we all learned a lot together.
I mean, mental illness needs to be destigmatized. Which means it needs to be seen as an illness, like asthma or diabetes, or whatever. Like any other illness, people should be able to talk about it without shame and elicit support from people. Get treatment, have opportunities in life that suit them. Then they make a contribution to society like everyone else, then they feel better and less stressed, which reduces their symptoms, and so you get a “virtuous cycle”.
I would tolerate your friend’s clumsy expressions of concern. It is better than ignoring your son’s condition, or pretending he doesn’t exist. I would just drop a bit of information in every time she asks. sooner or later she will get that it is just an illness. She might yet turn out to be your greatest supporter.
Hi Elaine,
You are not alone. So many of us mothers have been in the exact situation. I could be wrong, but I would imagine that at that table of “ladies” sat someone else who possibly knew what you were talking about whether directly or indirectly, and didn’t have the strength to be as honest as you. And that’s okay, because you did and next year when you all meet, maybe even before then, that person may have the courage to speak up or speak out about their experience. It happens to me all of the time.
I don’t go around announcing to the world that my son has schizophrenia, but sometimes in casual conversations, it will just lead in that direction, and before I know it, I have a new friend, someone to fell “not alone” with, and so do they.
Don’t try to make some understand, they never will. It’s too much wasted energy and you need that energy for yourself and for your son. Please don’t forget about yourself. My son is non-compliant at the moment, but I always have hope.
How old is your son?
Hugs,
Holly
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The stigma of sz infuriates me.
It seems it is one of the few particulars about the human condition that people are not allowed to talk about, like it’s some shameful secret instead of a biological disease of the brain.
People with other disabling conditions get sympathy and respect for their honest struggles to survive and thrive.
My close friends and family know that my bf has sz, and I think because they personally know him, they don’t judge him and aren’t afraid.
In my experience it’s people who don’t know someone with this disease who are the most ignorant. I was shocked once when the wife of a friend, who is a nurse, who is otherwise broadminded and intelligent said to me,“I don’t know anyone with schizophrenia and I don’t want to.” WTF?!
I wanted to throttle her but instead I shared my experience with my mostly loving and supportive bf, whose main issue is that he is afraid of just about everything, that he isn’t dangerous and people with MI are more likely to be victims of violence rather than perpetrators.
It seems that speaking out and speaking up should help the stigma…not sure if it does though. Maybe if a famous person “came out” or there were more sympathetic portrayals in the media, that would be good too.
I try to be sensitive and not “out” my bf, but I did that time, and she was surprised to hear this, because he does not fit into whatever ignorant characterization she had in her head.
I wish there were ribbons and 5k’s and awareness campaigns for this disease. The NIH lists it as the 3rd most disabling condition after 1. quadraplegia and 2. alzheimers… and people suffer and feel ashamed because of the ignorance of others on top of everything else.
sorry - ranting and raving.
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I try to tell people that he is better and I am much more vocal than I’ve been in some time about the illness. To get them to understand why they won’t take their medicine, I say I’m giving you your insulin right after you eat. They think “I don’t need insulin” and I say that is what they think in terms of their medicine. Anything we can do to get rid of stigma is good in the long run.
I read about brain research and it helps me keep a positive outlook. I pray they find ways to help our loved ones.
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Thanks for everyone’s insight I really appreciate it. I have been off the forum for quite some time as my computer died since my last post my son was hospitalized for a few months but he is on the road to recovery and is doing very very well 
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