Hi @Flymetothemoon
I too am grappling with accept of a schizophrenia diagnosis. I have joined the purposes of connecting others with lived experience. My experience with healthcare professionals hasn't always been great. I have found some benefit to myself in connecting with others, reading experiences, learning how they managed and knowing I'm not alone.
There is a few sobering realities.
Unknown Cause - Exact causes are unknown. There is a range of contributing factors including genetics, stress and environmental factors.
No Cure - There is no known cure, only management. Knowledge around medications is getting better as there is more research but it's not a perfect science. There is neurotransmitters that medications typically interact with (ie. counteract an oversupply of dopamine in the brain) but they don't always work and different people are different. People who recover are considered "in remission".
More likely to die young - Sadly, somewhere between 5-10% of people with a schizophrenia diagnosis will commit suicide. And there is an increased of early death due to other factors (eg. heart disease due to a lifetime of anxious paranoid thinking).
Out of every 5 people with schizophrenia:
* 1 will go into remission.
* 3 will have long periods of remission and at times get worse and unwell.
* 1 will have long periods of unwell.
I want to validate your feelings and say it is scary. I have felt scared. But know that you are not alone, and there is actions you can take to take responsibility for your condition, reduce the chance of escalation and relapse, and fingers crossed, you can still get enjoyment out of and live parts of a normal life.
To tell you my story, I had a diagnosis of 'drug induced psychosis' in my early 20s. I'm now 40 and have just received an upgraded diagnosis of 'schizophrenia'.
In my initial diagnosis, I had a lot of paranoid thinking, disorganised thoughts and some aggression in interpersonal relationships. Some of the typical schizophrenic symptoms were missing (no voices or hallucinations), some delusions in my paranoid thinking (a fixation that people/friends were always talking about me and in a negative sense).
I was initally prescribed a heavy dose of medication which heavily sedated me, and referred to a youth counselling service for first episode psychosis. Medication was originally not a positive experience, I would sleep for up to 16 hours a day and when I woke, I'd been starving and I'd eat then I'd go back to bed, I still wasn't able to function as a normal human, my weight ballooned leading to depression around body image. After a medication change, with no sedation, I was able to recover, complete a course at TAFE, and then get a job.
For most of my adult life I had been a "high functioning" schizophrenic. I took my medication I was prescribed. I was able to get a job, performing well and working my way through up promotions. I moved cities which led to a big uplift in my mental health due to the independence it gave me from my family. I did continue to recreationally use drugs (low to moderate use) with only isolated periods of abuse (high use), but no real escalation of symptoms. I have always struggled with romantic relationships, but otherwise, I was mostly able to conceal my condition. I had long periods of well with only some small periods of turbulence.
There was a lot of periods where exercise (running) had a significant benefit to my wellness.
Fast forward 20 years. I'm now 40, started hearing voices and a confirmed schizophrenia diagnosis. I had a deterioration in my mental health and some challenges on multiple fronts (work stress & issues, family stress & issues, and changes in friendship circles leading to social isolation). I started having auditory hallucinations (I started hearing voices). I developed some severe and typical schizophrenic delusions (a belief in and fixation on the afterlife, a belief I may be a person of religious significance, among others). Initially, I was able to challenge it as a delusion, as I deteriorated that become blurry and I started acting on some of the voices.
The voices were specific people. People I knew from all across my life. Most were alive. There was 2 who were people who had deceased. As I deteriorated, I formed a delusion that the voices were real and clandestine, and that I couldn't talk about it with anyone for a fear of some consequence.
Due to observations by family members, I was involuntarily hospitalised which was an absolute nightmare of an experience. The circumstances by which I was admitted (ie. no one explained why I was going into hospital) exacerbated my symptoms (the voices became more frequent) and created further distrust with the doctors (I was even more scared of telling them what was going on) which complicated treatment.
Despite living it with it for 20 years, and previously being able to articulate my symptoms well in therapy sessions with a psychologist, due to my condition (the delusion that I couldn't talk about it), the doctors had claimed I had no insight into my condition which complicated treatment.
My experience of hospital was very bad. They tried a range of medications which I was unresponsive to for a long time. The doctors actually laughed at me which created a feeling in me they weren't actually serious about my healthcare and improvement, and that they were just trying to prescribe me the worst medication they could. The whole experience felt punitive like a punishment rather than a healthcare experience, where they wanted to improve my condition & experience. Granted, my own condition (not talking about my symptoms due to the delusion of consequence) and belligerence (I was not happy with being in hospital) didn't help things. I don't know if this is normal of the mental health care system and what you can expect in a psychiatric ward.
Acting on voices also caused issues in interpersonal relationships. For example, I heard voices telling me that I couldn't hug my family members when they came to visit me in hospital.
My recovery only started after I left hospital:
* I recommenced old medications that have worked for most of my life and had the least unfavourable side effects (all antipsychotics seem to have pretty bad side effects - the lesser of all evils)
* I started talking to family members and telling them about the hallucinations (voices) and delusions, it created understanding that started to heal the rifts in relationships which had occurred when I was unwell.
* Passing of time has also helped.
I'm now approximately 5 weeks out of hospital, and I'm continuing to improve every day. I think there is some benefit to the medication kicking back in and taking effect, I overcame the barrier to talking about it and slowly I started talking about my symptoms which has helped in 2 ways - healing relationships (improving connectedness), and it's having a benefit for the purposes of challenging irrational thoughts (talking about it makes me realise it was not real). I'm also planning to recommence counselling with a psychologist.
Hope this helps and know you are not alone. It is a scary experience to accept a schizophrenia diagnosis, with a lot of unknown, but there is actions you can take to manage and reduce the chance of relapse (medication, therapy and exercise have benefitted me) and I have found some solace myself in hearing others' experiences.
