Illness and life over the years (question)

For people who have had this illness for a extended amount of time in their life’s 15years+, can you take me through some of your inner views on your illness and life, and also your life situation through out the years. Etc- first five years, next 5 years.

No need to post but please feel free too, I’m starting to have to understand this is going to be a long term situation/recovery, the rest of my life, and I’m interested how things have changed or stayed the same during your years with this illness.
-thanks chris

I got diagnosed with sz in 2003 when I was almost 19 but I felt it coming since 1998 when I was 14. So my first five years were prodromal and I never saw psychiatrists at all nor did I take meds.

The following five years (2003-2008) were spent in crisis and recovery. Was diagnosed in hospital the second time I was admitted. And went twice more and tried different meds. And eventually stopped meds and thought I was cured from my “depression” (I did research sz in this time but didn’t fully understand it’s nature to recur nor that it wasn’t curable etc.)

The next three years (2009-2012) were spent in remission and I was quite religious. Spent time at convents and eventually became Muslim and moved out from my parents home.

Then the following four years (2013-present day) I relapsed went back on meds and was in hospital twice more. Got rediagnosed and finally got to understand sz better. Also my voices for the first time got a name - Alien and his cronies. My experience of sz is similar to my early years but now I understand it much better. And have come to accept it at last. At the moment my meds are working well and I feel pretty stable.


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I was originally diagnosed as bipolar (but possible schizophrenia) when I was about 19, in 1996. I was prescribed medication which I never took and instead spent my days high on marijuana and drinking alcohol to self-medicate. I was reckless and impulsive and moody, hearing voices and paranoid all the time.

I struggled, working off and on when i could for several years. I quit seeing the pdoc and went to counseling a few times but nothing serious. During this time things didn’t improve for me, with lots of paranoia and pushing away of friends.

In 2000, my symptoms seemed to get better and, for a few years, I mostly didn’t struggle with paranoia or voices or anything. I lived on my own during this time for the first time in my life. The only thing I struggled with during this time was depression.

In 2005, I started going downhill again. I became paranoid again and started becoming aware that my thoughts weren’t just inside my head, that other people could hear them. I also began to experience the government putting thoughts into my head. I became suicidal and went to a county hospital partial hospitalization program where I was diagnosed as schizoaffective, bipolar type, which is my current diagnosis.

Since 2006, I have been dealing with these things on a regular basis again. I have seen a pdoc and been on meds the whole time and I struggle, but I have not given up hope. My faith in God gets me through each day. I take my meds and work with my pdoc and my life is not perfect, but it could be much worse.

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My mom says I’ve shown symptoms since I was 2 years old so technically I have struggled with psychosis for 19 years now.

Views on my illness? Well I’ve never experienced life without it so I can’t do any comparison to how I was well. I think it caused me a lot of trauma fearing for my life on a regular basis even from a very young age. I think a lot of mental health professionals are oblivious to the trauma psychosis can cause and as a result a lot of people with it don’t acknowledge their trauma from it either and that can prevent recovery. I think it’s important to tell other people, that you trust, what you’re going through so they can help keep you anchored in reality because you won’t always be able to do that for yourself. I think it’s extremely important to know what sets off your symptoms and makes them worse so you can brace yourself for these things or try to avoid them if possible. Learn to recognize when your symptoms are flaring up or getting worse. I think it’s also important to have an emergency plan of action for when things go to absolute ■■■■.

In 5 year increments…

First memories start at 3, hallucinated vividly and often. Don’t remember being paranoid but mom says I was. Wasn’t delusional until 5 when I started feeling like I wasn’t human, thought I was a werewolf. Age 8 hallucinations began to calm down and became rare/very mild.

Next 5 years got really really sucked into delusion. Developed this whole other world I was from. Began to realize I needed to be careful about who I told these things to because I knew not everyone would believe me. Started to become depressed at 10 and fell into my first major depressive episode around 12 or 13.

Next 5 years were the most intense for me. Delusions all became spiritual. Around 15 started becoming totally detached from reality. 16 had full psychotic break. Horrific hallucinations and paranoid delusions that went on for over a year. Hugely traumatizing and I developed PTSD. Gained insight I might be ill eventually because I had pulled a friend into delusion and she suggested I needed help. By 17 I was severely depressed and suffering from the PTSD. Became suicidal. Started therapy.

Next 5 years involved a lot of struggle. A lot of denial. And then slowly acceptance the more involved I got in my mental health care. Finally became comfortable with the fact that I was mentally ill. Came out to family and close friends. Tried out medication for a while and found it did as much harm as it did good. I had a lot of setbacks in this time. The road to recovery is not easy, it is long, difficult and very painful and requires a ton of work.

But today I am more stable and well than I have been in YEARS. I don’t have paranoia on a regular basis anymore. Havent had a major psychotic episode in well over a year. PTSD is finally not running my life anymore and has become more manageable. I haven’t struggled with severe depression since last summer and was able to get help I needed right away when I felt myself slipping into depression last semester. I’m getting services for myself from my school. I’m about to graduate after struggling and failing often. Things got a lot better.

So it took me 14 years to develop insight, then another 4-5 years of suffering before I finally came to terms with my illness and accepted it and started to make really significant improvements. So yeah like I said it is a LONG journey.

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