Why we shouldn't talk about our disease?

I’m still wondering why we shouldn’t talk about our disease to other people. When we break our arm, we tell it to people with no problems. We talk about it and how we had our arm broken. If we have a flu, the same stuff happens.

But if we have a chronic disease, things are different. We feel afraid telling people about our disease because they may see us as weak people. And it’s a fact, people get distance from us.

How can we change that? Is it possible one day we’ll be seen as strong people?


The media portrays only the horror stories of sz and you can understand how polarised society becomes because of it. All of the stigma and few, if any success stories will spoil any chance of the majority of people coming from an unbiased view and judging you as you are and seem to them.

For any societal changes to be made it will take the change in view from the media. If, for example, those who commit crimes from the stopping of medication was changed to the delusions caused by stopping medication; instead of the patient causing crimes because they are sz, then we will have a change.

The thing is sz patients are told they will become ill from stopping medication and that scares them into taking meds suddenly, whereas some patients live with the sz without meds and a slow withdrawal enabled them to live and function well without it. ( I am not saying you should do this, but for some it is possible.)

I am tired of this bias in the media, but it will continue as long as the only thing the majority of the people gain their insight from is this source.


Idk, not all chronic diseases are taboo. People with diabetes or arthritis or heart disease for instance, have no problems talking about their diseases. But we with sz/sza or bipolar do have trouble talking about our diseases. Because there is negative stigma attached to mental illness where there is none attached to physical illnesses. It’s ok to be physically ill where it is not ok to be mentally ill in our society. There is a double standard out there. And this is all largely due to the media’s influence.


I told the dentist about my Sz… He was getting impatient because I was nervous and not understanding everything he was saying… He was understanding and then happily answered all of my repeat questions and then told my gf about the possible med interactions in case I forgot… It was a very positive experience in the being open category…


Here in Brazil the media promotes negative things about schizophrenia as well.

There is an organization called ABRE which has the objective of diminishing stigma of mental diseases. Probably in EUA and other countries there is an organization like that. It’s a good idea to support these organizations or at least know that they exist.


It’s not even about media outlook,
Your right this is a illness like any other, and it’s a tough one to have
But when you start talking crazy to people, in any society and culture, you may get a response that doesn’t appeal to your reasoning.


I believe fighting stigma is in our hands not just the organizations. Like any forms of discrimination from the past/present: homophobia, transgenderphobia, islamophobia, gender inequalities, you name it, people have needed to talk proudly and openly about their experiences. I am still quite shy to “leave the closet” but wider and wider circle knows about my condition, both people I know and at workplace, if I need some support. I try not to care what others think. I don’t say it is easy but with practice it becomes easier… we are shaping the perceptions of others, and leaving it just to media we make victims from ourselves. I am fed up tbh with this bloody stigma, which is real but equally fed up with hiding. I want one day say proudly: I can’t come to work today because am feeling unwell and if an enquiries if I have a cold or sth just bluntly say: no I am feeling rather paranoid and anxious today so I need to rest. hopefully I will achieve that in my lifetime…


Great post!

Organizations are made by people, that’s the good thing about it. You’re not alone. You’re with an organization.

But, yes, there are people who can promote themselves. Elyn Saks is one of them. There is a book written by Elyn Saks that I want to read yet (when my English get better to read books).


Yeah she is good, I saw her Ted talk… exactly. But I believe one need to have some credibility in a society to do such think like her…

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I was actually directed by the administrator of the assisted living facility where I live, not to tell anyone of the residents here about my sz/sza diagnoses. He told me that people “talk” and “word gets around” and then “you suffer the consequences”. He told me it was best to keep it secret. I have been living here for a year and a half and only one person here knows of my diagnosis and she is a former clergy woman and she says she is sworn to secrecy as a good clergywoman is supposed to be. I think I can trust her. I hope. Anyway, no one is acting like they are avoiding me or shunning me, so far anyway. I have experienced that in my life and I know what that feels like. It is hell. And it was due to MI stigma.
I am bisexual and have always been out and open about my sexuality and hardly ever experienced any repercussions about that from the public. Except once. But, I don’t feel comfortable revealing my sz/sza diagnosis to anyone here at this assisted living facility.

if you tell sport coach you broke your arm, he’ll kick you off the team.

I tell nobody. giving personal information, in general, is not good:
people can use it against you.


Probably if you lived in 50’ you would not be open about your sexuality either. With the attitudes towards sz nothing has changed, it is still 50’ here with regards to that population. I am not encouraging you in any sense to reveal your condition, the same as not everybody revealed their sexuality when there was/is (in some places) a fight for equal treatment. I am just saying that open talking about that condition is needed for things to get changed. Take even for instance a Talk Day in UK which happened about a week ago. There were different talks of people with different mental health conditions, there was none though with sz… I was advised the same not to reveal, even my further family thinks I was treated for depression as my own mother despite her own acceptance wanted to protect me from negative consequences. The stigma is real, and it will take a long time to change it. And probably only for a few courageous people (which I sadly do not belong to) will be able to take it forward at some point. Did you see first gay parade in Germany? there were only a handful of people present. Look at gay parades now… Anyhow it is going the right direction. There are more and more campaigns, more and more people reveal their mental health problems, celebrities including. Sz is the last, most difficult straw as the most negative connotations are attached to it. But we will get there. Even my family doc whom I mentioned somewhere else on this forum, whose behaviour and attitude was despicable, thanks for a few talks with me (and definitely having done finally some further reading) acts different than when I saw him for the first time with my difficulties. More respect, treating me as a human being, not a hypochondriac who makes up symptoms not worthy to have a sensible conversation with. I am not Joan of Arc either, believe me. Just opening up to very selected group of people, whom either I trust or I do not care what they think.


I find that the sz’s who are not suffering that bad have the luxury of not talking about their sz condition to people. But, in the day’s when I was suffering terribly with psychosis and paranoia, that is all I could talk about was my symptoms, to both mentally ill people and normies alike. I talked about my illness and symptoms nonstop to try to get some kind of understanding from people and a bit of relief in that understanding. Unfortunately very few people, especially the normies, could understand where I was coming from, so it was a nonstop exercise in futility for me. I just had to basically suffer alone. For years, and years, and years.


I totally get where you coming from. After my first episode after leaving the hospital the first thing I did was to go the student sport association I belonged to, and to tell everyone where I was. I needed acceptance and understanding, the reassurance that those people still perceive me as their companion, as before… and guess what… nobody stayed by me… I never went there again, more than that, when I fully recovered I left the country full of shame and disappointment…

And how you getting on now, if you don’t mind me asking. Have you got anybody in the centre where you live worthy your time? I hope things got better for you… the funny thing about sz is (at least in my situation) that I get worse when I feel lack of acceptance form other people. And it is a closed circle because I may seem quite quirky, defo not a popular one, heh, staying on the side, checking the environment if it is “safe”. During that checking I already get the label that I am strange, and to my huge surprise as I heard from some people, that I keep my head high… if they only knew the real reason, heh… so it is a closed circle. I am isolating myself, then I get isolated, then I get worse, so then I am isolating myself even more… ehhhh… never mind… I believe one day I will crack that code how to manage it better.

On a couple of occasions when I’ve had an episode, doctors have asked me what I wanted put on my sick note, as they said some don’t want an sz diagnosis declared on it. I bet there aren’t that many physical conditions regarded in the same way. (Nice that they asked me though).

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I know what we need… we need our highest functioning members to be spokes people… they should be the experts they normie news calls in when anything sz related happens in the world… big corporations do this… the have trained professionals as their spokes people…when dealing with the public… pr people…the sz community needs a pr campaign… and a couple of people to be the face of sz…now we just need the several million dollars to fund this pr campaign…


I think we need to share our experience with others to help fight the stigma. Maybe not a good idea if you still suffer lots of parinioa. Lots of my paranoia came from " do they know I have sz". I’m kinda am over it , don’t care much what anyone but my immediate family thinks. Because of them I pick and choose whom I will tell. I try to tell safe people whom I respect and believe respect me. I think one day I will be open to everyone about it. It’s funny ( kinda). When I share with people they are usually shocked and swear they won’t tell anyone. Even though I don’t tell them to not share it. Most people I have told are totally ignorant and I try to educate them. Others have loved ones or open up about there own depression. No one could ever tell if I didn’t tell them as I am well recovered. Feels pretty good to not give a crap what anyone thinks. I don’t care much because of my sz to be popular or have lots of friends. I’ve only been drawn closer to people by sharing. Most people are curious for a while. Then they kinda just forget about it ,or it seems.


Maybe. Many minority groups were treated poorly in the past but they won equal rights through various means. Will it happen for schizophrenics? Who knows? the mental disease of depression and having bi-polar has made some progress in the public’s eye in terms of becoming a little less stigmatized. Are we next? I don’t know. We need more people like George Bush to become more open and discuss their personal battles with having paranoid schizophrenia and dealing with insanity and maybe it will make it more acceptable to talk openly about it and in a positive light.

A comedian from Saturday Night Live in the eighties made a point about gay people that was interesting. He said that gays or other minority group are seeking “all across the board” acceptance by society. This guy (Dennis Miller) said it will never happen. There will always be ignorant or mean people who just not accept other peoples differences. Whether they vocalize it or not there will always be stupid people who love their prejudices and will revel in picking on minoritys.


I don’t broadcast it but I have mentioned it to a select few and had reasonable responses. Funny that the two people I told at school both have BPD and take meds for it. Interesting coincidence. I don’t have BP, I have delusional disorder but it’s funny that they happened to have a mental illness as well. I know there is still stigma that you are ‘crazy’ and not the same as everyone else. It’s tough.