Stigma

[Zam]

Having a diagnosis of schizophrenia just plain out sucks. I have read that getting a official diagnosis can and has helped certain people because they can put a name to what is happening to them, that's great that it helps a lot of people in that way..

In saying that though, with schizophrenia the stigma that comes with that diagnosis is horrible. Everything I do or say is used against me and summed up as being apart of this illness. I will use some examples

1) I have had numerous surprise visits to my house and I am a very private person and don't just let anyone in my house, so the two social workers summed that up as me being uncooperative and difficult.. (They asked if I wanted to talk inside or outside, so I said outside) yet they twisted it around to my case worker

2) I always have curtains shut in house for a few reasons, to keep the heat out and stop glare on tv.. They told case worker that I am closing myself off from the world..

3) I can't look how I want to look. I grew out a beard for over a year, just because I wanted to see how much I could grow in a year. Firstly let me say, I took great care of it including beard oils and all sorts of grooming stuff to keep it very clean.. Also grew hair out as well.. According to case worker and doctors, I stopped taking care of myself and it is a symptom of schizophrenia..

4) It is extremely hot in the summers here now and I like to go for walks during the night if I can't sleep or am bored. It's not hot and I enjoy it.. They say it's not normal to go out walking during the night..

they have tried putting me in hospital for these reasons

I could give a crap load more examples but I will try not to make this post so long. I guess me just typing out my frustration.. Not only do I have to suffer with this illness, it also seems like I just can't be myself anymore

[Former-Member]

That sounds very frustrating! it sounds like you're not really being listened too about your wants and needs and direction of your own life.
Is there anyone that you trust who can help advocate those things/points that you want them to understand? I found having someone with me at certain interviews helped me a lot and kept me out of hospital a few times - but I'm not dealing with as much stigma and preconceived ideas as you are..
Good luck,
Lj

[Former-Member]

I’m sorry to hear about your experiences @Zam. It’s sad to hear that you don’t feel as though you’re being listened to and understood by your support workers. I agree with lisajane that it could be helpful to have someone else with you in those conversations. In any case, I hope that writing down your frustrations has provided some relief.

It seems to me as though stigma around mental illness is becoming less common. At least, I think there is more awareness around stigma. Even if that awareness hasn’t fully translated into the actions of society at large, I like to think it’s a step in the right direction.

I read in another of your posts that you’re training to be a peer support worker. How is that going? Do you feel like you’re learning valuable skills? I’m interested in how having a lived experience can change the support provided. In your experience, how have you found that the support offered by peer support workers differs from that provided by other types of mental health professionals?

It’s an interesting point about diagnoses and whether or not they are helpful or stigmatising, or both. There is an interesting discussion about it here. Feel free to jump in with your own experience or perspectives.

By the way, I really like your profile pic!

[CherryBomb]

Hi @Zam

It's sucks to be misunderstood, and to have people interpret your behaviour by fitting (or jamming) into a diagnostic box. 

It seems like no one is listening to your own explanations. I can only imagine how frustrating that is. 

The medical system isn't perfect, if it was we'd be free of mental illness. And while I don't doubt it can be immensely helpful (as you have spoken about here) it can paradoxically create distress in situations like yours. 

May I ask if you have a regular treating team? I mean, do the services in your area know you well? One thing that I've noticed is that it can be helpul for health professional to get to know you. That way they can guage was is 'normal' behaviour for you, rather than measure it against the staus quo. 

CherryBomb

[Zam]

Thank you @Former-Member

Thank you @Former-Member. Training to be a peer support worker is going slow but good. It's hard to keep up the motivation most of the time because all I want to do is sleep.. But I have to constantly remind myself about why I want to do it and for a good future for myself and my son.. 

I have had no experience from any peer support workers just case workers, doctors, therapists and psychiatrists.. Ohh and nurses.. Some have been good but they don't really offer much support and just mainly focus on medication.

i want to work in that field because I like helping others and if I can't find the help I need, why not become what I need? Just my way of thinking I guess..

thank you @CherryBomb I do have regular support team. They only focus on medication or going back in hospital. They don't seem to think anything else can help.. It's very frustrating

[ivana]

It sounds like they arn't able (or arn't willing) to distinguish between acts done from the Mental Illness vs acts done from personal expression.

For example,hipsters grow long beards and they are not doing it from mental illness.

They are doing it from a personality and styling choice, not from neglect of hygeine (M.I).

Sometimes some mental health workers come from their own fears or simply parrot what they have been taught and end up generalising all people with the same diagnosis,some can get a bit know-it-all or even arrogant and they forget that people are individuals and that the greater "teacher" for them should be the person with the illness itself.

Ironically,it sounds like they are leaving you out of the loop  about your own life!

So,perhaps you can make it your "job" to educate them that people with mental illnesses still retain the ability to have a personality and sometimes those personalities may not be conservative ones.

I believe the key is rationality and decision making capacity.Ie:if a person is rational and knows what they are doing and why they are doing it then that should be the sign that the choice they are making is from their personality and not from the illness.

If "educating them" fails,then perhaps you could contact the Disability Discrimation Commisioner or even a Discrimination Legal Centre because it seems that perhaps this is a type of discrimination?

[Zam]

Thanks @ivana good advice.

i have tried that and they don't really listening. It's like what I say goes in one ear and out the other. I thought maybe it's just me who feels that way but the times I have been in hospital and in group therapy type things, other patients said almost the same things I was feeling..

so much could be improved in the mental health field, and I get they have rules and regulations on how to treat patients but treating us like we are children who can't think for ourselves shouldn't be the way things are done..

I'm not a hipster or anything, I just wanted a long beard to see what it would be like. I liked it a lot but got rid of it due to being sick of people telling me I wasn't looking after myself. But if anyone who has grown a long beard, they can tell you it takes a lot more work then just shaving every few days.. A lot of grooming goes into them if you want them clean and I can say mine was definitely clean..

but goes to show people with mental illness are judged a lot more because of appearance