Getting to terms with your illness...please share

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So these days Ié had a few conflicts with my mom and I slept badly and in the morning I was woken up by a voice calling my name. Now, hypnagogic hallucinations arre something that most people have, however, it made me realise how most of you feel when having auditory hallucinations during the waking hours.

Surprisingly, I was glad to have these voices in the morning made me think of you guys, and made me understand better how you feel in your everyday life.

Now, beause of my lack of hallucinations I long thought I was not SZ. It’s a bit confusing. But then again, 30% of SZ have never had a hallucination. I’m simply in that percent.

It’s funny how I was ashamed for this long (10 years) of my (undiagnosed) illness and how now I’m trying to learn more about myself and other people that suffer from it. I started writing an autobiographic novel, came out good, it made me able to accept that I’m SZ, it was cathartic. Also, writing here has made me feel more in touch with myself.

Now, the question: How did you get to acept your illness? Was it spontaneous, or gradual and full of ups and downs as it was for me? What made you finally do it? How did you stop fighting to prove you were not sick? Did you ever fight to prove that? Etc.

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It took almost a year of being delusional before I stabilized in a state hospital and when I got out I was finally convinced that I was sz. It was a very depressed state I stayed in for almost four years because I was on risperdal and it had sexual side effects, rendering me feeling useless…after a few suicide attempts I started finding hope in a new med (abilify) and I felt great and started accepting my illness as something that “just happened”. I was delusional partially on abilify and now almost a decade later I am on an older med. prolixin. A large part of my confidence and hope is that I am now on a med that doesn’t make me feel “mentally ill”. I believe getting the right med balance is key in keeping up hope even though we’re mentally ill.?

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It was gradual for me.

I was splashed with cold water when the psychologist who had been evaluating me for a few days just looked me in the eye and stated “You’re very crazy.” I was diagnosed with paranoid schizophrenia five seconds later.

It felt good and bad to get the label. The good part was that I became slightly less agitated, I was not as irate as I was when I thought it was all real and explainable. The bad part was the label, which still haunts me and I have to hide medication and the whole deal from people I date, or they wont date me.

I then developed a new delusion which adapted to my diagnosis- it was that I was being watched for research purposes, that I was an uncannily highly functioning schizophrenic and that was the reason I was being watched. Rather a catch-22. Medications and experiences made that go away. Normal experiences like meeting new people and then behaving normally, not like they were afraid of me help disprove that delusion. Medications really did the trick though.

I was in denial for a good long time though. It was horrific. That was before my evaluation. I attempted suicide and began drinking and smoking heavily in that period of time.

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What made me finally do it? I’d say… hitting rock bottom and nearly leaving this life.

What helped me stop fighting was little by little it was too hard to fight. Plus, life seemed to get easier for me when I stopped fighting and just did what my family and doc’s told me.

The way I used to try and prove I wasn’t ill was hide behind a drug and alcohol problem. It wasn’t S.z is was alcohol, it wasn’t Sz is was amphetamines and LSD. That was why I was psychotic… I was taking drugs… I wasn’t ill.

But then when I wasn’t on drugs or drinking and I was still psychotic… then I had nothing to hide behind. I had to face the reality.

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By the way, hypnagogic hallucinations are a good thing for me, they mean I am falling asleep. I don’t really hallucinate hardly at all other than those. Like maybe once an hour I will hear something fishy while out in public, like someone at a restaurant commenting on how normal I seem as I am talking with my friends. It’s nothing compared to everyone everywhere talking about me or the voices in my head which I blamed on a chip in my head at one point, when they first started.

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Same goes for me. I was smoking pot for the first six months of my psychosis and blamed it on the weed, energy drinks and antidepressants. I then got off of weed and was still psychotic, actually more psychotic. My dad who is far from an MD or PhD in any sort of science (he has an MBA) thought that quitting pot too quickly made me psychotic. No, lol, schizophrenia runs on his side of the family.

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For me, I was only able to come to terms with my illness once all the positive symptoms subsided after six years of struggling with them. When they came back for a couple weeks a few months ago I found that I was far more equipped to deal with them than I had been in the past.

I guess once the positive symptoms subsided I was able and sane enough to realize that whatever it was that truly in reality had been causing these symptoms they had not been a positive experience in my life and could have easily landed me in prison in the end had I not had some iota of rationality to cling to. I say whatever it was that was causing my symptoms as I can’t pretend or on faith believe I know what exactly this was I was going through. But I certainly accept that it was a disease of the mind. I know that those memories of having been kidnapped, tortured and sent on a ship to Libya weren’t real and caused me to believe things that weren’t true. I was suffering from a disease of the mind whatever the cause of this condition may have been.

I found that first I needed to trust a whole lot more that at least someone in the mental health profession could be able and open minded enough to help me work my way along my path of recovery. It was a lot easier to trust once I came to the conclusion that despite the seeming reality of my memories and delusions and virtual telepathy experience that these things were not truly real. They were happening in my mind for whatever reason.

I may be a little more comfortable with keeping a skeptical viewpoint even in my recovery though. I know for others it has been helpful to think of their illness in the conventional medical fashion. I however as with most things don’t pretend to know the truth. But I’ve found what works for me and I’m grateful for this.

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I’m still basically undiagnosed due to the fact I never had an official diagnosis, however I can tell you that I know something is wrong. I first came to terms with it when I began to realize that my experiences aren’t in the least bit suppose to happen. I denied it left and right till I finally started to get tired of it and came to terms with it.

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I was actually excited. I saw it as a type of freedom. I guess you could say like an excuse you use with yourself. It made me feel better about being odd, about being different. I would like to say that I was caught extremely early so I don’t have a lot of bad stuff happening and I didn’t like through a psychotic hell. I think that I had some at least indicators when I was younger along with major depression. I got a two year break from that when I went off to boarding school, but then it came back with a vengeance.

I’m going to use what the blonde woman from a tv show my Dad used to watch said about her problem. She had an inner ear thing and she had to sleep at an angle. She was traveling around the country because she was an opera singer too and she said that she was very happy and relieved to have a label for what she was going through because she was always having to get someone at the hotel she was staying at help her prop up the front of her bed so that she could sleep at an angle. If she didn’t sleep this way she had a chance of her inner ear thing affecting her during a performance and it just laid her out. She couldn’t even function when it happened. She felt like everyone was much more understanding when she could say- I have ------ (I can’t remember what it was called) and I need to sleep at an angle. - she felt like people were much more understanding. She felt like they didn’t just think she was a prima donna, they understood that she had an actual problem.

It actually helps me on my annual trip with my extended family. One of my cousins (who is about fifty or more) would stay in her room and rest if she was worn out mentally from all the activities (we do a lot of activities when we go on our trip- bike riding, tennis, ect.) She set the standard, she has OCD and our family members understood that she simply wasn’t up to it. Because I am diagnosed and because of the understanding she got from everyone no one questions it when I say I am not feeling up to something. So even if other people might not understand what is going on- I have found it helps the people who love me and care about me because it helps them understand that I am not staying in my room because I don’t like them or just don’t want to go bike riding. They understand that I am really too worn out mentally to really do anything.

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It took a long time for me to accept my illness - mostly because I didn’t have adequate knowledge and support. My first breakdown lasted four years (2002-2006) and in that time I was in and out of hospital and on various meds and several doctors diagnosed me schizophrenic, but my mother didn’t accept it, so I didn’t either. I thought I was making it all up, because I read about schizophrenia and saw the symptoms in me, and I thought I was faking them. I thought I just had a form of ‘depression’ and so when I got into remission, I thought I was cured. My mother and her church group had prayed for me and so I thought it was all over, I was cured from the ‘depression’. The following year, with the help of a pdoc, I came off my meds and for the next five years I was doing well off the meds.
Then I relapsed in 2012. Lots happened that year, including going to study and living away from home, as well as working and getting married. I collapsed with the stress, and knew I had to get help, because I couldn’t cope with life. I saw a GP and then a pdoc who misdiagnosed me with Bipolar. I got put back on antipsychotics. It was only the following year, when I was hospitalised again, that the pdocs reconfirmed my diagnosis as schizophrenia. It came as a shock, because I didn’t realise that in all the years I was sick. it was actually sz and not depression. I also came to understand I was not cured, but in remission for a while and relapsed, that its a life long illness. Gradually as I read more on sz, I came to accept it, and to this day I accept it.

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well I realized i was talking to and acting out on my hallucinations while I was in the hospital for like 6 months. I hadn’t admitted myself, I was teenager at the time, my parents admitted me…when you’re at the hospital you kind of have a hard time denying your illness. So I started to learn everything I could about it when I was on my own time. I began, slowly, learning what was real and what was in my head. Right now because I don’t have auditory hallucinations I feel confused with my disorder. Yet I do have visual hallucinations and some delusional thinking. I had to prove my illness to the social security office to get disability but I had help with my doctor and my dad. I also had to have a written letter once to get out of jury duty. I didn’t think i could sit and listen to the testimonies all day and then make a judgement based on hear-say evidence since I don’t trust people because of my paranoid thoughts/delusions.

Other than that I don’t care if people don’t see me as Schizophrenic or not, it doesn’t really matter though I do get upset when people who don’t understand the illness try and say I’m not sick and I’m making it all up so I can stay at home and not work. Believe me, most of the time I’d rather be at a job earning my keeps then sitting at home with my hallucinations and delusions. But then I think of all the stress that comes with jobs and how stress is such a huge factor with my relapses I don’t think I’d benefit anyone at an actual job.

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Well, i’ve come to terms with the something that i am, but no one knows what it is.

It’s very hard to believe that you are sick when hallucinations shock(im not epileptic/only happened once in my life/it hurt badly) you and burn you while appearing.

And when a witch at a bar makes you visually hallucinate.

And when voices tell you where to find things, and make a joke using the time when you don’t know what time it is, and tell you who will win a popular sports game twice, one of these times two weeks before it’s played.

And when you get “sick” you start looking at the same times on the clock repeatedly, which is very strange because some of these times come up in films, like the 3 in emily rose, or the 333 in the fourth kind. That fourth kind one is especially wierd because your first visual is an alien, a grey damn alien.

And then it gets wierder when you have an experience in your second psychosis that is also portrayed in movies, like the golden child dream sequence, it was alot like that actually. And the dreams in monkeybone which contained a satyr which you also saw in your second psychosis.

And you try to make yourself believe it in the shower, you say “you know what, it was all just you being crazy, it’s imaginary, your brain is screwed up.” But they instantly say in your head “you are not sick, this isn’t you thinking this, we are talking to you right now. we. are. talking. to. you.”

You have aliens, ufos, shadow people, light beings who talk, satyrs, ghosts, beings visually becoming television.

I know i am schizophrenic, but they haven’t defined it yet is all that im saying.

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my acceptance of illness come gradually and full of ups and down,it is still the same,i need to stay medication compliance and be resilience.I think the long term taking of medication and also the surrounding positive environment made me do it.

i stopped to prove i am not sick because i stopped medication a few times and i still relapase,but after adding mirtazapine,i did better and was less depressed,i still had down moments,but it made me realize i needed these psychiatric medication

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I had not realized that I had this illness until 2012. In 2012, I had two severe relapses and one was even a near death experience. In this relapse, I had seizures, TD, sleepless time lasting for nearly one month plus horrible hallucinations that was full of Death-Eaters. This experience frightened me and I had to accept medication and the illness as a fact.

Now I am glad I still alive but am very sad and fragile. I wish I could get over the fear of relapse and feel strong and happy again. I am getting better and better now. I hope I can reach the point that I can sing beautifully for my life from the bottom of my heart again.

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This is for you, then:

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Thanks a lot for that song, Zupa, though I can not get onto Youtube due to the stupid internet policing by Chinese government. If you could write down the title for the song and the band, I could look for it on QQ music.

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I refused to get disability, I wanted financial independence and all, also the thought of being socially assisted kind of puts me down. As for other social duties, I tend to get involved in them recklessly, my husband started to point out when something might get me in a manic state, and I avoid those responisibilities, as you did with your jury duty. However, I was trained as a psychologist (I majored in Psy) and would really like to find a way to work as a therapist some day, If I understand cognitive psychology enough to do so.

For now, it’s only been 11 months since I got to terms wioth my illness and a month or two since I started accepting it’s SZ we’re talking about, so it’s kind of early to do anything else than enjoy the time I have to adapt to things (I’m on maternal leave too).

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Dresden Dolls- Sing. It’s a bit hectic as a musical style, but I’m sure you will enjoy the message… Sing despite your fears, sing despite your pain, sing despite humanity’s errors.

I hope you will enjoy it.

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I had to have disability, one pill alone costs $230 for a month’s subscription, and in order to get onto Medicare I believe I had to be collecting SSI. I’m not exactly sure, I knew I needed the insurance to help with medical costs, and when I was signed up I had just had a relapse with my illness and was not able to work because of it. I had been diagnosed with Schizophrenia since I was about 15/16 and when I was high functioning I could attend school, or have a job (but not both) but now I don’t think I could handle the stress of a job. The stress of my last job is what caused my relapse, and any job is going to have stress.

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I had insurance from my college (out here you automatically get insurance if you are a student) and that covered the pills. Sometimes I feel bad about the helth services that are provided in my country, but I find that the health insurance is a good one, so I maybe should stop complaining. Also, I have maternal leave automatically after even only one year of paying taxes, so it’s not so complicated after all.

Sorry if it came out wrong, I wasn’t trying to blame you for getting your disability, I said that just because here people on disability, many of them, are just escaping reality and most of them don’t really need it. It’s not the case in States I presume, because your health insurance often does not cover for your medical expenses etcetera.

I had the first crisis when I was 19, but I wasn’t diagnosed with SZ until 10 years later and 5 or 6 other hospitalisations. They just refused to write down the damn diagnosis for some reason, which in turns did not help with my acceptance of the illness.