A question for the Schizophrenia Community

What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?

Answers from the Community

I think having my doctor in my therapy is the ideal support resource, and I have been able to find. I don’t think there hasn’t been anything that I’m not able to [find].

Having housing that can help my son in his daily activities of living, somewhere that he can be independent, but also have that support if needed for people that have similar diagnosis as him. I think finding affordable housing has been the biggest challenge that we haven’t yet been able to achieve yet. He is on social security disability, but only receiving $500 a month really doesn’t allow him the ability to be independent and live in housing that he can afford, so that’s our main challenge right now is finding him a place where he can afford to live. But a resource that would allow him to be with like-minded people, have support staff available, help with his medication, that would be an ideal resource that we really feel is lacking in our society today.

I guess the medication was the biggest one, because it more or less put me in a frame of mind that I could just be away from everything and still be okay. I didn’t have to be all flustered, or feeling misunderstood, or bickering or arguing over what it is and what it isn’t, and what I did and what I didn’t do. That more or less made it easy to sit back. It seems like a waste of time in ways, but at the same time, you’re slowly working on something, so that’s a good way to go about it, I think, rather than trying to burst through. Because too much mistrust and understanding, they ain’t going to listen to you like you think they should.

My ideal resource would be I want my son to be able to stay in a wonderful, clean, loving, caring environment for at least three to four months to get accustomed to medication, taking it daily, taking it on time, taking it as prescribed by the doctor. Also reiterating life skills. Also allowing him to learn how to socialize again. And then also possibly doing some type of volunteer work or learning a skill. And then slowly being transitioned out of a facility like that into another facility to practice those skills and then all the things that were taught in the facility from three to six months. And then after they go to this other facility and practice those skills, be able to transition back into the community, whether it’s living with family, living independently or whatever it may be. Because I think that would help them without doing that in and out of the hospital when they have a crisis.

I have all the resources that I need. I take my medication and I go to my doctor, my psych and talk with my psych. And I feel that I have everything I need as far as resources to deal with my disease.

It would be ideal if each state had their own program like the one that [PII redacted] in now, that would be easier to be accessible. The way we had to access it, it was traumatic for [PII redacted] and horrible for everybody involved, myself included, my husband included, my children and my other children included. So if the states could each have some sort of resource where parents who’s being abused and their house being destroyed by a loved one with a mental illness, that could get the help they needed and get them living on their own. That was just our savior. That was our saving grace. If there was some way there was something that could happen where people had that readily available to them, I think we’d be saving a lot more people from a lot of sorrow.

I would like there to be a mood tracking app that included a place to track psychosis or other symptoms of schizophrenia. Also like an online or text crisis line for schizophrenia related crisis versus something you have to call because for me, phone calls feel a bit intimidating. Some sort of resource that can help with distractions or grounding in reality. I’m not quite sure what that would look like, but when delusional thinking or other distortions like cognitively, something that can help pull you back to the present in truth of what’s really happening. And then something that provides information that you can give to family members or even other medical doctors, providers who do not understand mental health super well, who are in the behavioral health field. Or tools for self-advocacy, things that help people explain what the illness is, how it affects them. Things like that I think would also be really helpful. And with all these things, including some element of peer support. Again, because I think that’s really important, for me anyway.

Oh, I don’t know what else. I mean, I really wish there were better medicines. They’re not that good. There’s been no really new medicine since 2000. I mean, if anybody would have told me that way back then, that it would be the same old just with variations, I would have been shocked, but that’s the case. So, I don’t know. I mean, I go to a lot of like NARSAD, well now it’s called Brain and Behavior, I go to a lot of their programs. They’re a really good resource. I don’t know what I don’t have. I mean, I pretty much know where to look for things. I have people with NAMI, the NAMI physician, a psychiatrist that works with NAMI. I can call him if I want. So I really have resources that I can go to. I mean, I wish things were different. I wish medicines better. I wish that people who work with people with mental illness had better training. I wish the police were ton times better and understood and all of them had CIT training. And so that when they approached someone with mental illness, they don’t make the situation worse, which so many people who come to the support group have had bad experiences. And I’ve had some too because they just don’t understand that the person’s ill. And so, I mean, I wish a lot of things would be different, but for me, for support, I think I know where to go.

I think weekly visits from a hospital or the mental institution, that mental clinic or behavioral health center that your loved one is enrolled in would be nice. Would be helpful if a nurse was to visit the client weekly, or a therapist was to constantly be calling and asking and speaking to the patient over the phone to make sure that they’re cognitive behaviors are bettering, getting better. I would think that if I had a therapist come into the house weekly, that will be very helpful. So that would be one thing that I wish I had.

Oh, I’m actually very happy with my support. I can’t really think of another type of support that would benefit me any more than what I’m already doing. I guess that’s it.

The resources that I wish I had to help manage my condition but haven’t been able to find, are an actual group of people to talk to close by. That would be my ideal support resource, and it would help being able to actually have face to face talks with these people.

I wish there was a way something just through an app or a website that would be able to help me with everyday life dealing with this condition, not just going blindly into it, like I have been, but there’s not, so I just take it one day at a time.

I wish there were more local support groups that I could attend, either through counseling or just people that meet up and talk about their conditions.

I think the ideal resource for me would be a little bit more hard science on schizophrenia. So in other words, how does my brain with schizophrenia look different from somebody who does not have schizophrenia? I feel like there’s some stuff out there about increased dopamine levels in people who have schizophrenia but it’s not… there’s no tests. There’s no scientific tests. It’s all by reporting. So I think it would be useful if we could figure out how the brain of a schizophrenia person looks compared to a person who does not have schizophrenia.

The resources coming out are probably heavier and there’s more research because there’s more being diagnosed in 2020, for some reason, and during this pandemic. And I think if your health insurance company would send out printouts of how to manage your condition, or even the psychiatrist would mail out that, but normally they just have a few, one or two sheets and that’s it. And just look it over. There’s usually other conditions they have, but not this condition. There are websites I’ve seen and I do have medical, old health books that I refer to. So that’s helpful.

The support that I wish we had were in person support groups or community education classes to better help with mental illness and schizophrenia. I guess more support in general.