Valerie’s story: Life with schizoaffective disorder

The story you are about to read is true, though the name has been changed to protect the privacy of those involved.
Valerie, a 43-year-old woman from Fort Frances, agreed to be interviewed for the purpose of sharing her story of life with schizoaffective disorder.
Val grew up in Fort Frances, and attended elementary and high school here. She also completed a two-year diploma course at the local college.
< *c>Real life
“All of my employers, except for maybe one, know my situation. They know that I’ve been diagnosed with this. I’ve been pretty forward with that.
“To this point, they have said it’s not a problem if I have to take time off.
“My family, well, they’re coping. I’m not the same person that I used to be 20 years ago. Things have changed since then.
“My daughter, she’s coming around, too. She’s beginning to accept. At first she would comment when I had to sleep and it would really aggravate her. Now it’s okay. She understands when I have to take a day off.
“I’ve been pretty up front with people. I just tell them I have schizoaffective disorder and that I just need this rest right now or else I’m going to get terribly ill.
“This past spring and summer, I just asked for less shifts so that I could just work it through. They’ve been pretty receptive as long as I tell them what’s going on. I tell them the truth and what’s happening, and they’re pretty good.
“It runs in our family, in a sort of way. Distant relatives have had nervous breakdowns and something similar like that. I have one sister who has been diagnosed with the same thing as me.
“It does run, but it’s not consistent from generation to generation.”
< *c>Stigma
“When I first was diagnosed, nobody talked about it. Absolutely not. We could not talk about this. I came out of the hospital and I was supposed to be all better. But I wasn’t.
“Some of the members of my family have grown accustomed to it. They will joke around, not in a hurtful way, but stuff like that. But when I first came out, it was NO talking about it.
“You were in the hospital. You’re supposed to be well now. You should be capable of doing everything you once did. I put high expectations on myself, as well.
“It’s been a learning process for everyone. I think the stigma surrounding mental illness is getting better. It’s been a lot better than when I first came back home.
“People are talking about it openly. It’s not the labels so much any more. We’re focusing more on mental health instead of mental illness. I think that’s important.
“People are more readily accepting of mental health problems. They don’t stare or sneer at you as you walk down the street. You’re not singled out like you’re some kind of a disease.
“People are beginning to realize that you’re a person. Sure, I might have some quirks, but I’m still Valerie.”
< *c>What I would tell you
“I would tell others, whether there is a problem or not. If you think something might be wrong, you should get it checked out. If I would have gone to the doctor or some early prevention thing, I probably would never have gotten that sick.
“I was in the hospital about three or four times for a day or two at a time since the first one.
“High school is hard anyway, and it was okay when I was well but I had weird things happen. I had hallucinations and I sweated a lot. I had social anxiety. It was hard to be sitting in class and have these things happen.
“I tried to hide it and hoped it would go away, but it didn’t go away. I had no one to talk to. I didn’t know what was going on. I kept it to myself. I didn’t even approach my mother, which I should have done, but I knew in the back of my mind that this was something to be ashamed of.
“It ISN’T, though. It is a disease. I didn’t know what was going on then. I kept it to myself, which is why it is so good to have more early intervention and education in high school and grade school because that could have helped me.
“The earlier it is diagnosed, the better your prognosis. And better intervention. Your chance for recovery is so much better.
“The hardest part of this disease is wanting to have control over something that you can’t have control over. Sure, this disease is controlled with medication, etc., but it’s still there and it can come at any time. A relapse could always come and you just can’t have control.
“Some day, I would like to further my education but right now financial reasons are stopping me. I’m still in the social services field. I’d like to be more involved in the helping profession.
“I like to keep myself busy and am looking at pursuing a clerical position. I’m gradually plugging along.
“I sometimes think, ‘I’m 43, I shouldn’t be thinking about this,’ but I have all this energy now; I want to do so much. So one piece of the puzzle at a time. Maybe it will come together.
“I wanted to do this interview because if I can help anybody in any way by having them read my story and think, ‘Hey yeah, that’s me. Look where she’s at right now. Yeah, I experience that, too.’
“It can help and give hope.”

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