Lived Experience Forum

[universepocket]

Today I recieved my final diagnosis. Or at least close to it. I thought the dianosis I had before was that final diagnosis. But now I am confident that this is the end. And I guess that means I have to come to terms with it and accept it. Got any tips? I have a mixed dianosis, I'm only 16 so it's been kinda difficult. But as of today I either have schizoaffective disorder or just plain childhood onset schizophrenia. I feel like I'm 80% schizophrenia and 20% mood disorder. Just because, I feel like the schizophrenia part effects me a hell of a lot more. How do you get past the massive social stigma?

I'd love to here all of your stories about being diagnosed. It's such a huge diagnosis to face. At least, that's how it feels at the moment. Do you think this kind of thing has only made you stronger? Do any of you have left over symptoms after being medicated? When do you think you first started expereincing your illness? 

[Appleblossom]

Hi @universepocket

Schizophrenia is a heavy diagnosis at any age.  Your attitude is very positive and I hope you get good support here on the forum and in real life.

I havent been diagnosed with it myself, but I probably have a hotchpotch of labels. I also like to hear about people's interests and lives apart from the diagnosis.  Do you have hobbies? Are you at school?

Glad to see you.

Apple

[theaveragejoe]

HI there

@universepocket one very good thing that you have in your favor is that you are only 16, as you said. You are a very mature 16 year old. Because of your age, going from what I read in books and from what my friends that suffer with schizophrenia tell me, early interventions mean that you have a good chance to be able to learn how to live with your disorder. A sensible combination of therapy and medication, with the help of your doctor and psychologist or psychiatrist, can really do wonders.

You are right, there is a lot of stigma out there but, with the help of your therapist, you could learn when, how amd to whom to disclose  your disorder. Naturally, you do not need to tell everyone about it but that is your choice, and your therapist can always advise you on that.

On a positive note, there is a new study done at the  Karolinsk Institute in Stockholm: in more cases than not Creative Genius is associated with schizophrenia, like many other mental disorder (Bipolar for example). 

If you have a talent, you should work on this talent and nurtuire it because this may well be the thing that will give a lot of meaning to your life. People can learn to live with schizophrenia and lead a good life. 

I have a friend who is a psychologist and one who is a professor, both have schizophrenia and both are very successful people. They have learned to use their schizophrenia to their advantage.

Many famous people have severe mental disorders. Actor Jack Nicholson has Bipolar DIsorder with psychosys and so does Richard Dryfuss. 

[universepocket]

@Appleblossom Thanks a lot for your support. I'm quite stereotypical in terms of creativity. I'm a singer, a dancer, an artist and an author. I think that's what I'm most proud of through this whole mental illness battle. I'm happy that I could acheive so much and find so much passion and love for what ever it is that I want to do. I also learnt a lot of languages through out the past few years, I think I'm up to 5 now. My favourite is Korean. I was at the top of my year before, now the school has kind of allowed me to take a break. I plan on doing as little as possible to finish year 10 and then I'll probably go to tafe. Never thought I'd be doing that, I must admit. I'm notorious for setting expectations that are way too high. I know I could acheive anything I set my mind to but I've really found that the only thing that really matters to me is that I'm alive, happy and that I have my family. And somehow I don't think that CEO life is going to nurture my soul. 

[universepocket]

I'm so thankful that I'm young. I have my whole life to live. I can take so much from my expereince with mental illness and use it to accomplish anything that I want to do. Although, this illness will never stop being a part of me, I think that it has only made me stronger for being there. My prognosis is good, and I'm very greatful for that. I've always tried hard to take good care of myself. I never thought that my will power would pay off in such a grand way. I'm moving cities at the moment, my last psychiatrist was an absolute ass but the only way to go from him is up. So I'm looking forward to having a real one. I wholeheartedly agree, it really can. I'm looking forward to experiencing that world of support. I definitely agree with the findings of that study. I definitely fit in that group. Thank you so much for that advice. That's always been my mantra. I'll never forget that schizophrenia has offered me so much.

[Shazab]

Hey there @universepocket I find this kind of thing very interesting too so I'm happy to share my story a bit, I'm actually in my mid 30's and was diagnosed about 7 years ago, although the onset of my symptoms was much earlier, probably similar to you maybe 14 or 15, so by the time I was diagnosed I was already quite comfortable with managing my symptoms although I would struggle at times. Diagnosis for me wasn't such a big deal, but by then I'd already lived with the consequences of the illness for over a decade and knew something was wrong. I deal with the social stigma mostly by not telling people who have no business knowing something like this about me, although sometimes I'm tempted just to see how they'd react :-). In relation to symptoms carrying over after medication, I'm sure each situation is unique and my thought is that you being diagnosed so young can only work in your favor. For me the medication was probably 75 percent effective on my voices in the years immediately after my diagnosis, but here's the strange thing, about a year ago my voices started to go away, and now I maybe get 2 a month, compared with them being there almost all my waking hours when I was unmedicated, so here's hoping. In conclusion I'd like to say yes, although it's been a terrible burden to bear, and the positive symptoms can be really difficult to put up with and I think the worst of it was that I lacked the motivation to make the most of my early years, but it hasn't beaten me yet, I'm working full-time in a steady job I've had for a number of years and married and you seem like a much more responsible person than I was at your age so you may do much better, and it is my belief that people like you and I are given other gifts to compensate for the hardships our illness imposes on us, so in that sense you could say it's made me stronger, I wish you all the best and hope this has helped

[Notsomentalau]

Hi Universepocket,

First off I'd just like that you're a strong person already for reaching out and asking for advice.

Unfortunately there is a lot of stigma surrounding mental health, especially for people in your age bracket. There's no way to really stop the stigma but you can educate yourself and other around you when you come face-to-face with someone's ignorance towards the topic.

There are many misconceptions and myths about schizophrenia but don't let them determine how you feel about yourself.

Although it may feel like you're alone, it's important to know that there are people who are in the same boat as you. 

Best of luck.

-Alison, Not so 'mental'

[Shimmer]

Hi @universepocket,

I'm Shimmer, one of the moderators here

I'm really impressed by how you are looking after yourself and also clearly living a rich and meaningful life!

Good on you for proactively reaching out to talk to others about how they managed receiving a diagnosis. I thought you might also be interested to read a discussion we had on the topic recently, here.

I look forward to 'seeing' more of you around the Forums.

Shimmer

[R4012]

Thank you for your share.

My daughter is 18 & was diagnosed with bipolar this year after a potentially lethal suicide attempt. We almost lost her in ICU & she then had a psychiatric hospital admission.

It broke my heart as I also have bipolar & wouldn't wish it on anyone.

But upwards & onwards. She is holding onto positivity like you.

Inspirational.

Have you heard of Eleanor Longden. Just a bit older than you she was diagnosed with schizophrenia. This short video gives me enormous hope. I hope it does to you too 😊

https://www.ted.com/talks/eleanor_longden_the_voices_in_my_head?language=en#t-9419

Eleanor Longden overcame her diagnosis of schizophrenia to earn a master’s in psychology and demonstrate that the voices in her head were “a sane reaction to insane circumstances.”

To all appearances, Eleanor Longden was just like every other student, heading to college full of promise and without a care in the world. That was until the voices in her head started talking. Initially innocuous, these internal narrators became increasingly antagonistic and dictatorial, turning her life into a living nightmare. Diagnosed with schizophrenia, hospitalized, drugged, Longden was discarded by a system that didn't know how to help her. Longden tells the moving tale of her years-long journey back to mental health, and makes the case that it was through learning to listen to her voices that she was able to survive.

If you watch this let me know what you think.

Warmest regards R 😊

[rogueone]

hey, 

Diagnosis changes for most mentally ill folk! It's common and nothing to worry about. With schizophrenia it's all about taking the medication. You take it and you talk with your treatment team ( preferably a psychiatrist ) and you deal with it!

Antipsychotics are huge weight gainers so if your young you need to exercise and eat well. Seriously....it can be the biggest problem. 

Trust your treatment team and read up a little about the disorder. I exhibit certain traits that arent' typical but I'm parnanoid schizophrenic over here in Australia. I lived in the States for a couple of years and they wanted to say I was Schiz affective....it's common over there if you have a mood disorder....but 90% or so of schizophrenics have depression......and prolly a few with anxiety as well....

Whilst diagnosis may change...treatment won't. IF the meds help then your doing all right!

Rogueone.