Lived Experience Forum

[Moon]

Hi there, I decided to join this community and hopefully be able to converse with other people that are going through similiar things. I kind of have social interaction issues, so the idea of 'group therapy' is something that terrifies me, while an online forum is more comfortable.

I was diognoised as having depression at around the age of 14. My doctor did not want to put me on any medication because she thought I was too young. It was a really hard struggle for me, especially at that age as well, because I was trying to deal with an erray of complicated thoughts and trying to 'find myself'.

When I was 20 I had my first 'episode' where I was convinced I was communicating with deceased musicians and that I was channeling their words. I wrote 30,000 words over one weekend and didn't sleep the whole time (day or night). I also thought there were bad spirits trying to hurt me and aliens around at night time. I was pretty much terrified to sleep during the night. This whole episode went on for over six months. I managed to hide it all and not tell anyone, mainly saying I was working on 'spiritual things'. Ironically, I realised that I had a problem, after I was in touch with someone who believed the same things as me, but turned out to be trying to take advantage. It was however a blessing really, because it made me try and think a bit different.

After this episode, I went to the doctor. But I was scared to tell them about what had happened (plus I was also still terrified at night and had a lot of anger issues). So this time I was placed on anti-depressants. I noticed that they helped aliviate all of the fear and did stabalize me a little bit. I still felt quite depressed, but just thought it was my fault and 'how it was'.

8 years later after having a major depressive episode (and still in it) where I constantly have trouble trying to do the normal daily things, like eating, showering, conversing and having a lot of trouble with communication, thinking, memory etc, I decided to get help and be truthful about it.

I thought, that in telling the truth for the first time this would be easy. However, it wasn't. I went through a doctor who didn't believe me, a mental health clinic that said I had mild depression and would not allow me to be assessed correctly. I changed doctors four times before I found one that would point me in the right direction and finally speaking to a psychatrist. He diognosed me as having schizoaffective disorder (depressive type) and it finally made sense.

There have been some really hard struggles for me, and I still have to fight hard each day. For a long time I blamed myself and considered myself lazy and unmotivated. Now I can actually understand myself a lot better too, and hopefully continue to move forward.

[chemonro]

Hey Moon, thanks for sharing your story! I sing along with deceassed musicians all the time. While my guitar... um, gently weeps? Yes. 

I think you've come a long way in your journey, and I'd like ot affirm you for the understanding you've gained. I'm glad you've decided to share your experience and help others. If there's hope for me there's hope for everyone!

[kenny66]

I think Schizoaffective Disorder is very challenging and is probably just as complicated as any other disorder. I suffer from quite an extreme form of it and have done so my whole life. I dont think there are any easy answers on how to understand it or get properly diagnosed. It took 3 years of therapy and observation, along with hospitalisation for me to move from Schizophrenia to a diagnosis of Schizoaffective disorder. Earlier in my life, I had been misdiagnosed constantly or had diagnosis which only identfied a part of the puzzle and didnt pick up on any of the comorbid stuff. Depression, Bipolar, Multiple Personality Disorder, DID etc etc etc were all in the mix. Anyway i am glad I* now know what i am dealing with

[Former-Member]

Thanks for sharing. I went from diagnoses of schizophrenia to schizoaffective, even got labelled bipolar despite not having manic episodes. Schizoaffective is not easy to live with though at least you have some insight now into your illness. It's a hard road sometimes but the awesome moments in life make it all worthwhile.

[kristin]

Hi Moon,

What an incredible journey of persistence and courage you've been on, and continue with. Thanks so much for sharing. I can really relate to your dogged persistence in getting help once you worked out that you needed it. I'm sorry you had so many obstacles put in your way by people who should have been helping you. It just should not be so damn hard!

I also relate to the self-blame and the long road to self-acceptance and understanding. I've finally learned (at 50) that there are good reasons for these things (MIs) it's just that we don't hold all the pieces to make sense of them. If you are missing a huge chunk of central pieces from a puzzle then you will have an impossible time putting the puzzle together to make a coherent picture (be it a literal or life-puzzle).

I've got bipolar type1 which I first diagnosed myself a couple of years ago, and my psychiatrist confirmed after I told her my full history including the manic bits (never mentioned before as I thought that was when I was well!). This is the 4th diagnosis I've been given in 20 years. Each one has been an experience learning about myself and how to grow in spite of the condition.

For all the suffering that it entails, having an MI can in a strange sort of way be a gift (which is in no way to minimise that suffering). I know I've been shaped into a stronger more compassionate person than I would ever have been otherwise. It may well be strength that is invisible or dismissed by many others, but most "normal" people would struggle to survive grinding relentless depression for years. So know that you are a courageous survivor, and you are growing wisdom and compassion to share :-).

Best regards,

Kristin

[Moon]

An update.

I haven't been on the forums for a while, and I want to try to remain active, to be supportive to other people in this community who are having a hard time.

Since last posting, there have been ups and downs, a few episodes but I feel like I am on the 'right track'. I decided to apply for disability, and after being assessed I was approved. I also wanted to try and have some kind of goal for myself, so I will be studying part time at Uni and have support to do that. 

Some days are still a struggle, but I am continualling trying to remind myself that I have to take it one day at a time and not become overwhelmed by many of the why, how and when questions that can build up.