Diagnosed with schizophrenia

[Flymetothemoon]

Hi everyone,

I have just been diagnosed with hebephrenic schizophrenia, and I am unsure how to handle it. I don't know what this means for my life and future. I am scared about what this diagnosis will mean for my life. How will I cope with it, and how will I live my life? Has anyone gone through similar experiences? How are you dealing with your diagnoses, and how are you living your life? Does it get better?

Do you have someone with you who supports you, or are you alone? For me, I have lost pleasure in life and have no interest in anything. I am not good with medications, but I accept taking them to help me manage my condition. I want to know if people have experience with schizophrenia and what your thoughts are.

[rav3n]

Hi @Flymetothemoon, I'm rav3n - it's lovely to see you join, welcome to the forums 😊

I personally don't have any lived experience with hebephrenic schizophrenia but I can understand how overwhelming and scary a new diagnosis can be, there's new things to learn and adjust to - know that we'll be here with you on your journey, listening and supporting you all the way 💗

There are a few threads relating to experiences with schizophrenia here if you'd like to check them out in the meantime.

[Flymetothemoon]

Thank you for your support @rav3n 

[Dimity]

Hello @Flymetothemoon and welcome.  There are quite a few people on the forums living with schizophrenia or schizoaffective disorder. I had a schizophrenia diagnosis for quite a while but it was revised but it didn't really change the meds. 

I've always lived alone apart from a couple of interludes with my parents,  either being looked after or looking after them. I worked (which wasn't always easy) then went parttime then finally retired early. I suppose I was moderately successful but regret my isolation. 

Don't let your diagnosis stop you from pursuing your dreams. With the right meds and lifestyle choices you can stabilise and enjoy life. Pick your team wisely and find mutual support. And good luck.

[unreal]

Hi Flymetothemoon, (cool name)

I understand receiving a diagnosis can feel very challenging i hope the diagnosis was clearly explained, how the diagnosis was reached, and what symptoms you can perhaps expect.
If not, i would request to have that discussion with the person that diagnosed.

It's important that your experience is validated, and for want of a better term "normalised" or "expected" based on the diagnosis. 
you should be supported with ways to cope, and hopefully overcome these issues.
I am not personally familiar with hebephrenic schizophrenia, so i am not sure of how it presents over of types of schizophrenia.

Do you have a support network? Friends, family, professional?

i only recently got my historical medical records (from overseas) after being dx'd with various issues here in Aus, including ptsd, adhd and asd. all of these fit with me and my experience.

My experience of schizophrenia was years ago, following the prodromal stage that i wasn't rally aware of, the active stage where everything changed for me and i had a definitive breakdown, which went unchecked for 18 months, which led to a total, predominantly delusional, schizophrenic episode and ultimately hospitalisation.

None of his was never explained to me, and so I was wandering around for years with no idea why i felt so broken. Things did improve, somewhat over that time, but i never felt quite right, not quite myself.

It wasn't until much later when i was able to properly talk about what i had experienced, how my symptoms manifested, that things really started to make sense, and more so when i read my medical records which raised the question of my breakdown being a schizophrenic episode, which i have now come to understand was a FEP (First-episode psychosis)

For me, having a better understanding of what led to the breakdown, that what i experienced was "normal" for someone experiencing a psychotic break, and being able to talk about it and how my "symptoms" manifested was for me very helpful.

My advice would be, based purely on what i found helpful, would be for you to try not to dwell on the dx, but rather to work through understanding your experience, if that is right for you. Find someone that understands schizophrenia and share your experience with them, how your symptoms manifest, even if they seem strange.  
Honestly, one day i thought i might be a wizard. Weird, no? i don't recall thinking i had magical powers, but i do remember that being one of the better days during that period.

grrr.... i had written more, but for some reason the website failed and i lost what i had typed.

The bit that i do want to type again though is that for you to know you're not alone with this.

Feel free to ask me questions, if you need to, or want to.

I hope some of that might have helped in some way, and wasn't just rambling nonsense

[greenpea]

@Flymetothemoon  hi hun i have schizoaffective disorder which is schizophrenia with a mood disorder.  my honest advice to you is to stay on your medication.  find a really good psychiatrist and mental health nurse/psychologist.  this is a great forum with people who really care stay in touch.

[StuF]

Hiya @Flymetothemoon 

Welcome to the forums. Very glad to see people have responded.

I wish to write more, but I think I need to sleep on it first.

I hope you're having a good night

[StuF]

Hi @Flymetothemoon 

Well, a night and day to sleep on it hasn't really crystallised my thoughts on your post. So I'll just go ahead with this...

Great that you've found the forums- lots of good peoples here with lots of widely varied experience and a generally welcoming and friendly attitude to communicating and supporting each other. I hope you can become part of the furniture, if you like.

My diagnosis, for about the last 15 years (?) has been schizoaffective disorder. Like @greenpea  said, kinda like schizophrenia with a mood disorder on top (a very basic definition of both diagnoses). So I can relate to some of what you are going through...roughly...

Anyway. Your post.

I guess a lot depends on how your symptoms present and how effective the medications (and other therapies) are at treating them. What supports do you have, in terms of medical and others? Life certainly can get better...with effort

I'm very fortunate to have my parents supporting me (I live with them). I also am fortunate enough to be involved with a mental health support group and do some volunteering to give me a bit of purpose.

As for medications...please continue to accept taking them. Some of the side effects may be pretty crap, but, in my experience at least, they serve a real purpose.

Anyway, I don't want to go on and on. Not sure if my words say what I want to say...

But again, glad you found the forums. Hopefully this will be a good place for you to visit 🙂

[Spirit_Healer]

Hello @Flymetothemoon,

It will take some time to grieve and accept, after your diagnosis. Every does this in their own way. Having said this, the sooner you come to accept this, then you can move past the denial to learning to cope, take care of yourself and heal. How you cope will depend on how compliant you are with medication, and how well you avoid the triggers of your illness. It can be triggered by different things including substance use and stress. How long your episodes last and how many you have had are sometimes used to predict how well you might recover, but as that is in the past, just focus now on trying to be symptom-free for as much of your life as possible. People also respond differently to medication – some people are more resistant to medication than others. It is possible to have a fulfilling life with things like a family and work – it depends person to person. Try to worry less about your future – use your energy to control what you can control – your medication regime, self-care, routine, exercise etc. Follow the advice of your treating professionals and build your support team. Psychiatrist, psychologist and GP can be helpful, as can support groups and family and friends. This is even more important if you choose to live alone. Living with other people you trust can provide a safety net, as they can help monitor how you’re going and help you to seek professional help if you need it. One common feature of schizophrenia is that you may not recognise a relapse because of lack of insight. So those around you may recognise it before you do.

Loss of interest is called anhedonia. It can be hard. Sometimes it take trying a new activity or hobby, or revisiting an old one, before you can gain the emotional satisfaction of it, so keep persisting!

With your medications – keep yourself accountable and try to be compliant with taking it. If you need to, put a reminder on your phone or set an alarm so you don’t forget. Side effects can be hard, but some will wear off over time, so don’t be disheartened. I see medication-taking as a necessity for keeping me stable, so that I can function in work and life and have as good a prognosis as possible.

There are many supportive people here… good on you for reaching out, and keep us posted!

[Flymetothemoon]

I am doing better now and coming to terms with my diagnosis. I want to know out of all the people in the world why I was the one to be delt this fate. I question fate it's self now. I am sad because I cannot ever be like I used to be. My personality is completely gone and people I knew feel cold now. I feel like everyone knew my fate except me. It is like I was the only one blind to this. I wish I had a magic ball so I could see this diagnosis before it happens so I could have squeezed every ounce of life before it happened.