I’m curious who reads this blog and how useful or not it is in informing people about this disorder. Please reply here and tell me a bit about yourself and/or why you read my blog. It would help me out a lot to know who my audience is. Thanks!
From Despair to Where
Living with schizoaffective disorder
About:
My name is Kelley. I was diagnosed with schizoaffective disorder in early 2008. The purpose of this blog is to connect to others who struggle with this illness the same I do, or know someone who does and want to better understand the disorder.
December 30, 2008 at 1:47 am |
I love what you’re doing here, Kelley. This is amazing.
December 30, 2008 at 2:41 am |
Thank you
January 5, 2009 at 3:08 pm |
Hey my name is Maggie. Im doing a project for my senior year at college regarding the valuable bi-products of mental illness–or maybe just the value of the thought/experience that is often disregarded when mental illness is treated to socialize our minds for the common culture, AKA ours. I totally relate to your “disconnect” and “formulas” for life–I live in that state on a very regular basis but remain quite alright, functioning and happy (most of the time). I too have experienced the depths of mental illness. I was just wondering if you would be willing to share more, or just talk more about your experiences and your mind. Or even if I could barrow some of your stories for my installation. Let me know how you feel. Im not quite sure how this works but email me if u can.
January 5, 2009 at 5:30 pm |
Hello, Maggie!
Sure, I have no problem being involved in your project. Part of the reason that I started this blog was to get information out about this disorder. All I ask is that you link to this site as a way to give me credit. You can email me at kahloil@yahoo.com if you’d like to talk to me more privately about this
January 5, 2009 at 3:17 pm |
Kelley,
My daughter has the same diagnosis, and seems to have similar experiences. Reading your blog has been very helpful to me. I have two areas of interest. First, how has this affected you socially? My daughter doesn’t have any friends her age. School is a nightmare for her. I think it actually makes her condition worse. The school administration and staff are very helpful, but she has a termendous amount of social anxiety, and feels like everybody is judging her. I think that most of the behavior that she describes is normal teenager behavior, but to her, it is about her. She feels like nobody likes her, and they wish that she would go away. She is a lovely person and very kind and quite. It is very sad. Second, you mentioned your mom once (the icecream post). What can parents do to be helpful, and what can parents do that is harmful/hurtful/conterproductive? I want to support her as much as possible, but also know that she can be very dependent on me to the point of not functioning as a 15 year old should. I don’t want to hurt her in the process of trying to help her. Do you have any advice?
January 5, 2009 at 6:00 pm |
Hello, Chris
I’m glad this blog has helped provide you insight! It’s always nice to hear that because, as it’s comforting to others to be able to relate to me, it’s comforting to me as well, since so often I feel incredibly isolated with this disorder.
Socially, I have very few friends at the moment. I recently took a semester at college and managed to do pretty well until I stopped taking my medication (the side effects were bothering me too much, and I sort of thought I didn’t need medication, either). I’m working on finding a new medication now. I had planned to return to school for this coming semester, but I don’t feel stable enough yet, so that’ll probably have to wait. Currently, I’ve felt very unsteady, so I don’t go out much. I can relate to your daughter’s feelings of others judging her. During my early teens, when the first signs of mental illness emerged in me, I was completely convinced that everyone hated me. I missed a lot of school as a result. I was convinced of plans my friends had against me and would fight with them often about it. They never understood what I was talking about, but I was utterly convinced that I was right. As the years have progressed, I’ve learned how to better handle these thoughts. I look for concrete evidence now before I start believing how I feel. Is there a reason someone would be upset with me? Have they actually said anything to me that was mean? As easy as that sounds, it’s taken me years to really get those thought processes to override how I was feeling.
I also want to mention that, even though I stay in a lot right now, I do see a future for myself that’s more social than right now. I don’t allow myself to feel defeated by this illness. I know I have it in me to talk to people and be pretty much all around “normal.” I look forward to returning to school and making new friends!
As for how parents can help, the best things my parents have done for me is to listen calmly to me and not pressure me to “get better.” On my end, it’s been quite embarrassing at times to talk about the depths of this disorder to my parents (the hallucinations, delusions, etc.), but the way they’ve reacted has made me feel safe and comforted. I had convinced myself that they’d react badly, so for years I kept my symptoms hidden. When I eventually told them, there was no shouting or anything that I expected. They reacted calmly and with a very positive “what can we do to help?” attitude. For me, it’s helpful when my mom asks me how I’m doing/feeling, because it opens a conversation and makes me feel less awkward than if I went to her first. Basically, be supportive and don’t treat the illness as something bad, but more as something that needs to be worked around. Your daughter may share similar feelings that I occasionally experience of “this is all my fault.” Be soothing when you speak to her about it. Even flat out saying “this isn’t your fault” may help.
In regards to her dependence, setting small boundaries might help. My parents keep me from relying on them too much by reminding me of how well I’ve done at points in the last year and how it’s possible for me to return to that point again and be independent. Just reminding her of her own strength might help by itself. Just don’t say it in a negative way, like “you should be able to do this by now.” Say it like “I know you have it in you to overcome this and become an independent woman” or something.
I hope some of that was helpful!
January 8, 2009 at 3:06 pm |
Kelley,
Thank you for your response. I almost cried!! It was very helpful. I will certainly take your advice.
Kelley….I want to thank you for doing something that I consider extremely important. You are putting a face on mental health issues that is hard to find. When I research this condition, it seems like the worse case scenarios are what is written about. It can be very disheartening! It is very encouraging to read about your expereinces and attitudes towards your condition. I know my daughter is completely capable of living a normal, happy and fulfilling life. She has a health issue that she can, and will, learn to “work around”. I wish this kind of positive exposure was more prevalent. Please keep up the good work that you are doing!
Best wishes on your blog. I will definitely keep reading!
April 18, 2009 at 8:58 am |
Apologies for such a late reply on my end!
I’m glad that this blog is apparently helping others in one way or another because that’s the entire reason I started it. Sometimes it’s difficult for me to keep writing (for one reason or another), but it’s positive comments like this that help me to continue on (even if lately my entries have been pretty sparse).
I hope things are going well for you and feel free to contact me any time about this issue!
xx
February 22, 2009 at 9:39 pm |
Hello, Kelley! I just read your most recent post. And, I really liked it a lot. I, too, have schizo affective disorder. And, I even liked Coraline as well. So, it looks like we have a lot in common! I’m gonna leave the link to my blog so that you can check it out sometime. I just started it.
April 18, 2009 at 9:07 am |
Hey there!
Thanks for reading! I checked out your blog as well and it looks like you’ve been doing a great job of keeping up with it (moreso than I’ve been doing here lately). It was nice to read that you’re not really affected by schizoaffective disorder anymore. I’m pretty much the same, currently, but I still fear relapses.
February 22, 2009 at 11:55 pm |
I started recieving google alerts a little while back after I was first diagnosed with schizoaffective disorder from Psychotic disoder NOS and my doctors told me to learn all I could to help me to combat it and fight against relapses. My illness started while I was on active duty in the United States Marine Corps and has continued for over thirty years. Exercise has been the only thing that has kept me from biting a bullet or worse and I have tried suicide by stranger taking five bullets and having my throat slashed. I have finally accepted my illness and I have two doctors, a mental health counselor and a good friend who tries to understand and looks out for me.Keep learning and exercising and take your meds and therapy. It helps a lot.
April 18, 2009 at 8:47 am |
Hello. I’m sorry it’s taken me forever to reply to you!
You have quite a life’s story! I’m really glad that you’ve been able to make more peace with everything now. It is really difficult to deal with everything sometimes, but it is entirely possible to have a decent life despite all of this.
I hope you’ve found the blog helpful in some way. Sometimes I’m not sure what people take from this, if anything, and obviously lately I haven’t had much to update with like I did when I started.
Anyway, thanks for reading, and best wishes for your continued success battling against this illness.
xx
May 9, 2009 at 6:01 am
I would like to also add that just knowing that there are others out there that are also dealing with this illness is a bit comforting. I now know that i am not alone with this even though we all maybe have to endure differnt symptoms. When my sza first onset, I went undiagnosed and therefore untreated for almost thirty years and carried the diagnosis psychotic disorder NOS and twisted and tweaked with meds all the time. But I knew I was not the same who completed the United States Marine Corps boot camp at the top and finished a very complicated mechanic school also near the top. But I have had so much trouble functioning, denying the voices and trying to drink and drug the mood better and self med the symptoms. Acceptance of my illness and then working with the pros has led to my sza diagnosis and it is right and I accept it. My psychotherapist is very good in my opinion telling me from the start that I can live with this. I still have symptoms and I am clean and sober for just about two years and six months with no cigarettes. I am on a big time med cocktail and i also have a mental health counselor and I work twenty hours a week as a dishwasher at a restaurant. Big change from rebuilding diesel engines to washing dishes but I will not give up and I fight the suicidal ideations. I stop for now but if you want please reply. Thank you and keep trying to live good.
May 8, 2009 at 12:18 am |
Hello, I’ve been diagnosed with the same illness for four years already, I’ve been doing well, I was able to finish college just this March, but after graduation I decided not to take my medicines anymore because I thought I can handle myself already, but the symtoms are back, I really have very bad mood swings, from happy to sad, high and low, I got irritate on little things, and of course the voices are back( I really thought these voices I’m hearing are still me, those things that I can’t say out loud and end up suppressing it), I also have no energy on doing things, insomia is also present and suicidal thougths are there too. So I went to see my doctor even before my appointment schedule. I’m a little bit better now, I’m back on taking my medicines again. But still I’m a little sad and lonely, because I’ll be in medication forever, and I really don’t know what the future instore for me. And honestly speaking, I don’t like myself when I’m in medication, it’s like I lose my true self, it’s like playing safe always. When I’m not taking my medicines, i can feel anger, hatred, being happy and I can laugh so loud and I like the voices too, they give me comfort, after i was diagnosed with schizoaffective I lose a lot of friends, I actually push them away, I kind of liking the being alone thing! They never understand what I’m going through.
I’ve been surfing the net for quite a while already when I found your blog. I really hope that I can communicate with you. The thing I badly need now is someone who would understand that thing I’ve been going through.I hope I can hear from you.
May 9, 2009 at 12:01 am |
Hello, Cindy!
I can relate to a lot of what you wrote, and I’m glad that you were able to find this blog and that it has helped you in some way. Feel free to email me if you wish to speak further (under the “contact me” tab on the site).
xx
May 14, 2009 at 1:45 pm |
I think you are very very very awesome for making this blog. I’ll just say that I covered some ground already
the gist of it, maybe I’ll be brave and write about it all one day. when I am ready.
-S-
June 13, 2009 at 6:04 pm |
Hi Kelley,
It was great to read some of your blog today. I am 46 and was diagnosed with schizoaffective disorder two years ago when all hell broke loose in my life. I began to be ill when I was in my late teens, but “back then” I don’t think the diagnosis even existed. I was diagnosed then with psychotic depressive illness and later with Chronic Paranoid Schizophrenia. I was very ill for about 15 years…then married and had a daughter and did really pretty well up until three years ago. My daughter is now 17.
Anyway, I’d like to congratulate you for having a really good attitude about your illness and to encourage you to finish school and try to go back to the land of the living. The good news is that the meds available now are thousands of times better than the old crap I used to have to take.
Please email me if you have any questions. Thanks.
July 29, 2009 at 5:43 pm |
Hello, Cynthia!
Thanks so much for your comment. I’m sorry to hear that it seems you might not be doing so well currently
Wow, I can’t imagine how rough it had to be to deal with this before it was understand in some way (not that it’s exactly understand greatly now, either, but you know what I mean). It’s great to hear that you were eventually able to do well for quite a while, but, again, sorry to hear that it hasn’t lasted
Thanks so much for your encouragement. It’s really appreciated
June 22, 2009 at 8:01 pm |
Hi- I’m 26 years old and I was diagnosed with schizoaffective disorder- bipolar type 5 years ago. I find it amazing that you’ve already accepted your diagnosis and are moving forward with optimism. It’s taken me a long time to get to that point and I’ve still got work to do.I think a lot of it has to do with the fact that mental illness isn’t really talked about and/or acceptable in society, period, let alone the Black community. My last relapse was last year because I was working full time and going to school and I stopped taking my medication. Right now I’m working towards finding a job and continuing with my education. Reading your blog just gave me renewed hope that this illness doesn’t have to defeat you. I will keep in touch.
July 29, 2009 at 5:37 pm |
Hello, Simone.
I’m glad that I could provide some sort of positivity for you in all of this. I’m really touched.
I know what you mean about the stigma of mental illness. That’s a large reason I decided to keep this blog. If you don’t mind me asking, could you elaborate on what it’s like in the Black community when it comes to mental illness? Your mention of that intrigued me, and I’ve been very interested in understanding the viewpoints of other races in various ways, but I’d never thought about this issue in all of it, oddly. I guess because I’ve known some people of other races around who have dealt with various mental disorders, and seemed to view it all the same way I do, so I just kind of assumed everyone was like that–but I was clearly wrong. I’d greatly appreciate anything you could tell me!
I hope you’re doing well currently too.
xx
June 28, 2009 at 9:22 pm |
Hi Kelley!
I just came across your blog and I’m extremely impressed. First, let me say a bit about myself. I too suffer from Schizoaffective Disorder. I was diagnosed in early 2004 when I was in my early twenties. Unlike your episodes sound, I was psychotic for over a year. I experienced a great deal in that time, including several near death experiences. On the suggestion of a friend who happens to be an author, I am looking to start my own blog and would like to use yours as a model of sorts. Your format is awesome, you seem to attack issues that people like you and me face up front with no bull shit. I read your recent entries and I have some advice if you don’t mind me offering it. In regards to your difficulty functioning, give it time. Right after my diagnosis, I wanted to get back out into the real world and accomplish things, the most noted of which included finding a steady job. I had never actually been a productive member of society, always getting bailed out by my parents, and never really seeing a work experience through. What I found was that I had to take my time with the recovery process. As it was described to me once by my brother, a very insightful person, your brain is like a muscle, once you pull it or tear it, it needs time to heal. I think all the shit I put my brain through, including the substance abuse and the endless nights out, it needed time to regroup. So I gave it time. Though our stories might not directly parallel, we have the same diagnosis and there must be similarities in recovery. Finally, I’ll tell you that a career change later I’m finally on the right path. I am currently working toward a teaching degree to teach High School English. Kelley, you will find your way, just give it time. I know this was a long message but your blog inspired me. You are engaging and candid and I appreciate that. I hope we can stay in touch, I will continue reading.
Best,
Josh
July 29, 2009 at 5:26 pm |
Hello, Josh!
Thanks so much for your reply! You gave some good advice that I will really keep in mind
I don’t mind at all if you use my blog as a model for your own. I think it’s great that you’ll be writing as well! Please give me a link to your blog so that I may link to it from mine and also keep up with it myself. I’m very interested in hearing about someone else’s experiences and thoughts on this disorder.
July 29, 2009 at 8:43 pm
Hi Kelley,
I’m glad you updated. I will definitely keep reading. My site is copingandhoping.wordpress.com… I hope you link mine to yours, I’d love the traffic. I will keep in touch!
-Josh
July 13, 2009 at 5:00 pm |
I’m thrilled that you’re writing about this. I’m a college student struggling with schizoaffective and a temporary stop on meds that’s running me through the ringer. I struggle with disclosing my diagnosis with to my professors, and having to acknowledge that my disorder makes things harder for me than it does for other students.
I’m glad someone else is blogging about it.
July 29, 2009 at 5:19 pm |
Thank you!
I hope the situation with your meds has been resolved and you’re doing all right.
I know what you mean about informing professors about your diagnosis. I’m struggling with that myself currently :/
September 29, 2009 at 11:40 pm |
I’m happy to meet a fellow “recent diagnosis” person. I was diagnosed on May 28, 2008 when I was in a full-blown psychotic episode. My diagnosis is Bipolar I with psychotic tendencies. I’m happy to read your stuff. Very thoughtful. Keep up the good work!
November 2, 2009 at 8:25 pm |
Hi Kelly,
My daughter (Beth) was also diagnosed with Schizo-Affective, after an initial diagnosis of Schizophrenia. It’s been almost 10 years now… She was 20 at the time… I came to your blog by jumping from links on other blogs
I recently watched “Minds on the Edge”… Have you seen that? and decided to “come out” for both myself and my daughter (I’ve been diagnosed with PTSD after years of anxiety and depression).
I’ve enjoyed your blog and commend you for your work to reach out…
July 30, 2009 at 9:08 am |
I’ve added a link to your blog from mine, and I’ll mention it in a post later as well. What I’ve read of your blog is pretty impressive. I think you write a lot better than I do! I’ll definitely be keeping up with your blog as well. I’m glad you’re writing