A question for the Schizophrenia Community

What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?

Answers from the Community

Two resources that we have found most useful have been a support group that’s local to our area, called Aaron’s House. It was started by a mother who had a son with bipolar, and killed himself. So she started a support group for other families that have loved ones that they care for with psychiatric conditions. And they have weekly meetings, they have in-person meetings, they have on the phone meetings. Another resource that we found has been amazing, is Family Center for Recovery in Lantana, Florida. This place has been a godsend for my son. It has given him his life back. It’s given him a new lease on life, and he is able to now start looking for a job. Now that he’s on stabilized medication and taking it every single day, he can see a future for himself, whereas a year ago, being in and out of mental health institutions, that just wasn’t something that he could see for himself.

Well, I feel I was the biggest resource to make ends meet or whatever in it because I more or less… All through the years, I slowly proved myself more and more that… What I said, what I did, and what I… what track I was on or whatever, it was more or less the one I was trying to explain. And so, that more or less did it more than anything that what I was arguing about most of the time with them about my illness… I worked on it all through the years, and now it’s more or less what I was trying to say the whole time. I guess the doubts and fears and just make it impossible to listen. And having ups is the best way to prove it. And then, of course, all your social clubs or your psych wards or whatever… Things are the things you do. But when it comes down to it, it comes down to you proving what you’re saying is what it’s really going to be. You have to show that you have some type of judgment on what you’re trying to tell them.

The resource that I have found so helpful, very helpful is the National Alliance on Mental Illness, Greater Houston chapter. I learned so much by taking their family-to-family class about mental illness and about my son’s condition, about how the brain works, about the medication, how it affects them, what are the side effects? What are the benefits of it? Learning how to talk to my son and reach him in a different way because his mind processes differently. So in essence, where I became a member myself and started teaching family-to-family classes. That’s how impressed and how I found this organization to be so helpful.

The resources I find that helped me, is going to my mental health appointments at the mental health facility, and talking to my psych, and talking with other support groups that deal with schizophrenia.

The first two programs that came to mind for me with this question are the EASA program. I don’t know if this is nationwide, or if it’s a thing that happens in my state. It stands for Early Support and Assessment Alliance, and it works with young people who’ve experienced their first incidents of psychosis, and it involves elements of peer support, as well as kind of like a holistic treatment. There’s a lot of people who get involved in your care. And it’s also very driven by the young person as well. And then also National Alliance Against Mental Illness, which I think is really a great resource as well. Because there’s, again, that peer support component as well as it can connect to a lot of further resources. So those were the big ones that came to mind for me because the peer support has been a really important part of my recovery. Also mood-tracking apps. I find those to be somewhat helpful. Things that include medication reminders are also nice, and apps like Headspace that have a meditation component as well.

I can honestly say, nothing. There has been nothing that I have ever found to help me. Everything is what I would call a circle jerk. You start out at one, they tell you call them, they tell you to call this one, then that one tells you to call this one, and then that one tells you to call this one, and you never get anywhere and you spend massive amounts of time on the internet or on your phone, and you get nowhere. That has been my whole life the last 24 years with my son. The police that have been to our house many times because of his abuse toward us have told us, “You just have to let the courts take him over. That’s the only way. That’s what they do. Get him on a list.” Yeah, so then he can’t get any services because he has charges against him. So we didn’t do that, but we did the only thing we could do, and that was fight back in our own way by saying, “No, he cannot come home.” That seemed to be the only thing that made any difference anywhere, when we said, “No, he can’t come home.” They were not allowed to let them out on the street. They had to find a place for him, which is what they did in the nursing home. And then from there, the nursing home said “He’s way too young to be here,” and the state took over and did it. So I’m grateful that we finally had the strength to say no. It was very, very hard, because you always want to take care of your baby, but we had had enough abuse. And it has greatly improved since then.

Well, I already mentioned the National Alliance for Mental Illness. That’s the resource, their website. But mostly it’s the one on one contact that you have and the education you get. And that nothing you say in a NAMI group will ever be criticized or anybody will think that’s weird. I’ve had social workers when I’ve told them about how I’m feeling be like, “Oh my, that’s not good”, or something, but there’s nothing. If you’re in a family to family group or you’re in a NAMI social support group, there is nothing you can say that people do not understand where it’s coming from and do not understand that you’re just expressing your frustration or whatever. There is no other environment where you get that kind of support and that kind of acceptance. And it’s really a great thing to have a place where you can say things that you couldn’t say to anyone else, but that just gets off your chest then. And to have people who you can call. Our son was on parole once and he got the Star of the Week or something. And I called my best friend, one of my best friends, NAMI friends, and said, “Hey, great, week”. There’s no one else you could call and say that to. It’s the friendships. It’s the support. It’s completely just acceptance. And everyone and people are dealing with these really difficult illnesses and no one else can understand it like your NAMI community. That’s the resource for me.

A resource that I found very helpful is Schizophrenic Supportive Group on Facebook. They’re very resourceful because most parents have been through similar situations as I have. We can relate to each other, what we go through with our loved one’s condition. It has been extremely helpful. YouTube videos also about the condition and how to try to work around and manage being with a person that has schizophrenia has helped a lot too.

I am on social media, on Facebook. I am part of a support group that helps others suffering with schizophrenia cope, and tips, and stuff to get through the day. I also take advantage of therapy with a counselor, and it’s pretty beneficial. It’s nice to know that I’m not the only one out there.

Tools that I have found most useful regarding my condition are online groups of people with the same condition. And what makes this resource useful to me is that I’m able to talk to others who are dealing with the same condition.

The most useful resources I have found that help for my condition would just be taking it one day at a time, and just trying. If I don’t know something, I research it online. Maybe I go to Yahoo, and I type it in the best I can to figure it out. If not, I just try to rely on my previous knowledge of life and just go that route.

I follow personal blogs of other people with the same condition and I also use the Calm app to help me wither down my thoughts so my mind isn’t racing.

I found an online support group for people with schizophrenia. It’s useful because for people with this diagnosis, it’s nice to hear others’ experiences and it’s nice to not feel alone with this diagnosis.

Yeah, there’s a website called CureSZ, C-U-R-E-S-Z.org I think it is. And that is a website on schizophrenia. And it just gives you quite a bit of information about schizophrenia and it also talks about people who are medically resistant to most medications. So that’s why they talk about Clozapine, which is what I’m on now, that it’s for people who are treatment resistant is the name, treatment resistant. So that was really helpful and just good to kind of see that there are other people out there. The girl who started the website was actually homeless for a couple of years, and I can relate to some kind of crazy things going on in my head where I was almost homeless. So that’s helpful. And then my doctor’s very helpful in terms of just supporting me and guiding me as to what I can and cannot do. My ideal support resource would be? I’m not sure about that. I think that covers it.

I had a brain scan done. I think it’s a… I forget the brain scan and also my enzyme levels and overall health conditions from Baylor. And also, my psychiatrist has given me pamphlets and print outs of the usual disorder and what it looks like and how mainly is referred to as a broken bridge. So that’s been helpful.

The resource we found most helpful is, we found some groups on Facebook that are schizophrenia support groups. And it helped my husband by seeing that he’s not alone in this and that other people struggle with the same stuff that he does, and he could post if he’s struggling, and people can reply back and give him advice, or how they handled it. And it helps me see the thought process that people with schizophrenia have, just to help better support him as a caregiver, and it just gives me more insight on his disability.