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Do you tell people you have a MI?


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I'm a little backwards on sharing.   I give presentations to classes, church groups, any groups that want to learn through a national organization about my experiences with mi.  My family, docs and friends from support groups know.  But, I don't bring it up in conversation, so I don't tell other people.  It was hush hush in my family for awhile, but my brother is composing info on relatives and what dx they have/had and what meds worked/failed. But, disability, no I rarely bring that up.  It does sometimes come up in the presentations and a lot of the same people know that know my dx, but I'm really not comfortable discussing that.

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I only tell the people about MI that I NEED to tell. That it would be courteous to tell. A few family members and my best friend, really. 

 

Like "Hey, if I drop off the face of the planet for a while, I'm probably still alive but thinking I need to not talk to people as a favor to them" type thing.

 

More "It's not you, it's definitely me. I'll call you/come out of that room when I'm ready." <---that.

 

I am beyond believing that there's a chance that it's POSSIBLE for people without MI to really grasp this at all, sadly. SOME people may, but the vast majority probably will not. Some of these people DON'T have MI, that I talk to about it. And I talk to them extensively at times. They listen. They ask questions, then they either jump to conclusions or blow something off. I love all three of these people I've told, but no matter what I do, I can't make them GET it. I'm done trying. It's been many years and several conversations and still, just WOW HOW DO YOU NOT GET THIS YET?

 

Or not even GET IT, like how are you STILL believing stereotypes on TV and shit when you've had a real-life example for so many damn years? I just, I don't know. It sucks. I quit, ha ha. DONE!

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My family and my best friend saw how I acted during my first major episode (when I was finally diagnosed), so I didn't have to tell them. Other than them, the only person I ever told was my boss/mentor at my old job. I haven't told anyone at my current job (been there 5 years). There's just too much of a stigma associated with MI. If I have to say anything I say I have a hereditary illness. Since MI runs in my family, that isn't untrue. If anyone asked me what that illness was, I'd say I didn't want to talk about it. I think if I told people I have BP, their view of me and anything I say and do would be colored negatively  by that knowledge.

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I give presentations to classrooms and sometimes adults, in which I tell my story of what it's like to live with schizoaffective disorder. I am supported by a mental health organization here in Canada. 

 

So I'm certainly "out" about my mental illness. Generally though, I don't bring it up. I only mention it if I think it's going to help someone (sometimes sharing my story prompts others to share theirs or get help), or if they are very close to me. My family and my close friends know. I have always received positive feedback. I've never actually encountered stigma directly. 

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I don't have a job, so I don't have to worry about people at work.  My family and some friends who live near me know, it is kind of obvious to my friends anyway because of my frequent hospitalizations.  My friends are nice about it even when they don't understand very well. 

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I don't have a job, so I don't have to worry about people at work.  My family and some friends who live near me know, it is kind of obvious to my friends anyway because of my frequent hospitalizations.  My friends are nice about it even when they don't understand very well. 

It's great how your friends are nice about it; some so-called friends can hold it against you.   

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I don't really tell people unless it has to come up, sometimes in dealing with people no other explanation suffices. Living with roommates for instance, after a while of questions and my evading them ("what do you do, why aren't you working or in school, what have you been up to since high school, why dont you come outside with us, why do you have cuts on your leg" etc) Ill tell someone I'm on disability but I wont say why, or ill be vague as to explain to people why I dont come out of my house. I dont use my diagnosis because im not close enough to most people to tell them something like that, but I will say that certain things are difficult for me or chalk it up to anxiety. When I just got diagnosed I told people I cared about, but thats it. I'm very afraid that people would think less of me, but at the same time when people dont know why i am the way I am sometimes they must get uncomfortable too. Its a catch 22. I lost a lot of friends when I started having to go to the hospital so I'm pretty wary now.

I feel like I'm camouflaging now. I'm really good at keeping things to myself, and I was in threater and did a lot of public speaking courses so I kind of fall back on that experience when I'm with people as like a guide on acting normal. Especially with eye contact, I dont give eye contact but in public speaking you do so in meeting people I always tell myself when to look up. So I feel like I'm faking it, because it doesnt come naturally. Sometimes when I'm doing that with people I hear them make jokes about MI or make fun of people because they think someone has one (a big one is making jokes about shut ins or people that dont look you in the eye). I would hate to be one of those jokes, so I keep acting and as soon as I'm about to relapse again or lose control, I isolate myself.

Edited by cosmeticplague
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I also only tell pple on a 'need to know' basis.  Most people around where I am though knows I have MI of some sort, but I never get into specifics with anyone (never had).  If I need to I will give a very general overview of what it is like, but otherwise I keep things to myself.

 

But in terms of just telling someone I have MI, I do so only if I need to.  And then if I need to and they ask about it, I am very general but never into a lot of detail.

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It really depends on the situation. I have told three teachers about my MI, and all of them learned about it after the fact, when I was in a recovery period and no longer in their classes. I couldn't talk about it as I was experiencing it because I hardly KNEW I was experiencing it. Does that make any sense? I generally only tell people I am close to, such as friends I've known for a while. Beyond that, I really only tell people on a need-to-know basis. The reason I told those three teachers was because they were my favorites. Basically...I have to really like and trust you in order to disclose the fact that I have depression and anxiety going on, or, I have to absolutely need to do it for medical/academic purposes (getting help in school).

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I don't have it tattooed on my forehead, but I'm out. If the topic comes up, I say I'm BP. If people ask me what I do, I say I'm on SSDI for migraine (which is true, the BP is an ancillary claim). I don't see the point in being secretive about it, it's not my fault.

 

I haven't had any blow back, except for one job when I was first diagnosed (in '89, pre-ADA). And at that job, in retrospect, I was pretty symptomatic. But in the 80s, you could get fired for being gay (well, you still can in some states, but this was in CA). So thems the breaks.

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I sometimes tell people, sometimes not. I've never told an employer, or co-worker. But it is easier to be open about it sometimes. Like with close friends I've had, I would either have to tell them, or make up some lie to fill in the gaps on my life history. I've spent whole years in bed, or housebound, more or less. 

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