Family and Caregiver Schizophrenia Discussion Forum

Do You Tell People About Your Diagnosis?


#1

Sorry for so many questions, I hope it’s okay to ask. What has been your experience in sharing your diagnosis with others? I want to protect my daughter from the stigma associated with this disease, but I also want her to be able to have people cut her some slack because she is struggling. What has worked for you?


#2

I’ve been more open about it lately, it’s a part of my life so my friends should know. Complete strangers and ignorant people I don’t tell. No need for the drama it brings.

I found that most people I told were really cool about it, but I guess I just chose well who I’ve told.


#3

Very rarely. My family of course. Or fellow schizophrenics I’ve been friends with. Never anybody at work. Doctors, people I’ve lived with. I’ve never even told people in my multiple hospitalizations. I’ve never gotten a bad reaction from anybody.


#4

Hello @TotesMaGoats. I feel for you. I am in the same boat. Other than family I haven’t told anyone about my son yet and everyone I work with is wondering why I take time off here and there. I find that most people just don’t understand and it really irritates me… Good luck to you and your daughter.


#5

When I first got diagnosed I was very uptight about telling it people myself - if they were to know at all. I thought it was very important for people to hear it from me, such that they wouldn’t imagine me as all incoherent etc. but got the right impression by seeing and hearing me as I disclose.

I quickly got more comfortable about it. Disclosing to friends and family can be a huge relief. Nothing has to change, I do not need a special treatment, but just for them to know what I’ve been through is important to me. Nowadays I am not uptight about it all anymore, and see the period when I was as leftover paranoia from my psychosis.

People I encounter don’t come equipped with an elaborate picture of what schizophrenia is. Neither accurate nor inaccurate - they simply haven’t got a clue. Honestly, the only stigma I encountered is self-stigma. Others have different stories though. I think of my condition as any other heavy event in life. It’s not nice, but it’s okay. I have come to terms with it and I want people dear to me to know. Like I want them to know how I am doing in any other respect. I want to share with friends and family when I’m heartbroken. This is what being friends consists of for me. So it is with schizophrenia.


#6

Other than family, who took it well and were disbelieving and in denial, still are. I’ve only told administration and two professor at college. They all said they couldn’t tell, I hid it well or had no symptoms. Hopefully I’ll start to work over the summer and I won’t tell my employers or coworkers.


#7

I also do not tell. Coworkers, employers, professors, peers…they don’t know.

I told one friend because her brother has sz, too. She was just happy I told her what was going on with her brother and giving her advice.

My mother might have told her boss to explain the absences and my frequent calls to make sure she was okay…I don’t know how that went.

I outright lie if I accidentally mention the doctor. Example: Oh what are you going to the doctor for? Me: Check up. or metabolic blood tests (nobody questions the metabolic blood tests).

One time I lied to this one woman who tripped me up (I was with the dep of rehab and they paid for my bus passes) while talking about how she was with DOR (she was physically blind). I told her “I’m bipolar.” Anything but sz, man, that freaks normals out.

My deepest sympathy.


#8

i told a few people i was bipolar.


#9

Depends on who I’m talking to. I’m not like “nice to meet you I’m mentally ill” but I’ve been pretty open about it. I guess I feel it out first with people who aren’t diagnosed, like an old friend of mine from highschool I recently met back up with I noticed had a pretty hostile opinion of anyone with as he said “mental problems” but then we were talking about an old acquaintance and he was like “Dude you can’t even talk to the guy he’s so messed up now”

Met the guy recently and, well, you can’t even tell there’s anything wrong with him and he’s in fact better off than he was back in the day.

During my advocacy for clubhouse model I was pretty public about being someone diagnosed with mental illness.


#10

Some people see me as really normal and high functioning so I tell them, and I prefer to tell them myself. They don’t see it as it struggling my way through madness because I’ve met these people after I’ve gone through the hoops and different medications, coming to terms with it, and trying to get things right. They see me as non threatening so (I think) they probably don’t have it in their head the stigma that comes with being SZ/SZA.

Other people I don’t tell or wish I never told because they saw me at my worst and come up with every false assumption they could think of. (Manipulative, liar, psychopath) They don’t see me as a human being and they left or they don’t believe in my ability to rise above even though I hit the gym on a regular basis, kept my weight and body fat at a healthy level, and am returning to school in the fall. I do alot even healthy adults don’t do and yet don’t I get the credit I deserve. Which is why I come here so often, I talk about my experiences and you all validate me. And even though I didn’t set out to make this post lovey-dovey, I thank you.


#11

I think it’s good to let your daughter decide who to tell, what to tell, when to tell.

If it’s a question of getting some “slack” from school or wherever you can say “serious health problems” and leave it at that until you know for sure you are in a situation of confidentiality with HIPPA protections in place (so that your daughter is the only person who decides whether or not to disclose).

If your daughter is as symptomatic as my family member has been, other people will already know something is up and either be sympathetic or not.

The stigma is a nightmare. You can’t protect anyone from prejudiced mean people. There are nice people everywhere too.


#12

I am surrounded by sz’s where I live. When we go to town once a week people know where we’re from, so it’s kind of futile for me to try to keep my dx to myself where I live. At my mom’s funeral a couple of people asked me what I was doing with myself, and because I hadn’t anticipated that, and I hadn’t thought up any cover stories, I told them the truth. I don’t know how it was received. I will probably never see those people again anyway. If I was working somewhere I would probably keep my dx from my co-workers. If you let them know it could bite you on the ass.


#13

No…I am a senior in high school, and I have learned to only tell people you really trust about this. Teachers/Professors generally will understand and cut slack. Maybe contact administration and they can help out. As for friends, only the ones she really trusts. Many people still don’t know what sz is and assume everyone with it is dangerous when that is far from the truth. Best of luck to you!


#14

I normally don’t disclose, however I’m a peer support volunteer for a local MH charity and I used my lived experience quite a lot!

When I do disclose I normally just say I’m a little crazy or say I have a psychosis spectrum disorder, both of which are quite close to the truth!


#15

I just tell people that I’ve had a bad cold for 35 years and that seems to satisfy their curiosity.


#16

Had to tell the school about my daughter. They thought she was being a brat and trying to get out of things she didn’t want to do. Much more understanding now


#17

The first person who was told was my partner. Then we told my parents who blamed it on my father’s physical health issues. My dad’s own mental illness wasn’t diagnosed for years. I told a good friend of mine who stopped talking to me all together. My partner told her mom, dad and step mom and they’ve told people against my wishes.


#18

I don’t tell anyone, our family knows, I don’t have friends just coworkers and if they knew, it would make things worse for me, this place is the only place I open up a bit and even doing so makes me wonder who has access


#19

I empathize with you. I don’t tell people in real life. I only tell people here. I also worry about anonymity and plants out here in cyberspace…

but I need this place, I need to speak to other sz. You guys are the only ones who know what I’ve been through, and that’s what I really need right now.

and if there are plants on this website maybe they will realize that we’re human beings who deserve constitutional rights like everybody else *says this hopefully


#20

It really upsets me how some people respond to hearing someone is mentally ill and like I said before I haven’t told anyone our family and our family is very supportive. As for my son, it is his decision and he hasn’t told anyone yet. It is still a shock to him. What’s killing me is, I work at a place where there are about 900-1000 associates and the awareness of cancer at our place is through the roof but the awareness of mental illness is ZERO… I thought about being the first to raise awareness but I don’t know if I have it in me (it’s to soon and I am still very emotional about it) but anyway they even have days at work where you can where your cancer t-shirt which they sell at work to support cancer and raise awareness. Why cant they sell shirts that say, “I understand schizophrenia” or “I support those suffering MI” ect ect. anyway if you think about it they say about 1 in 100 have sz and you know many other have some type of MI so why don’t they raise awareness!!!