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My schizophrenia

My schizophrenia

I have seen the Schizophrenia Awareness Week posts on the socials, thanks SANE. It is pertinent for me this week as I have been reflecting on my journey with this illness.

I have been a member of the forums since 2014 and they have helped me to connect and express myself at different stages over the years. I come and go from the forums as life gets busy and I get well and I don't write as much. But they have always been here when I need to address aspects of my mental health in this space, and for that I am very grateful.

It's easy to be well for a while and think it will never happen again. It's easy to get caught up in life and sometimes forget I live with chronic and complex mental illness when things are busy and life is full. In the past couple of weeks I have been getting anxiety, which is very uncomfortable. It's a reminder I am not cured. I am doing all the right things and I have appointments with GP, psychologist and psychiatrist. It is something I have to manage and treat. I remember the triggers from my episodes of psychosis and anxiety in the past and I can see how I am stressed and overwhelmed at the moment. Because I am older and getting better at managing, I am able to see things from experience that I couldn't the first few times around.

I am very quiet about my schizophrenia. I kind of put it in the corner and make sure I take my tablets every day and night and write in my diary and pray it won't come back. I am really scared of the stigma associated with it. I don't tell my workplace. My colleagues have no idea. I rarely mention it on the phone to my family and friends, some of whom do not know. Sometimes I talk to my Mum about it, even then I have to try not to get defensive when she talks about me when I was 'sick'. I kind of want my schizophrenia and the experience I have to be on my terms, but I also want people to understand! It's tricky because I have such interesting and hard experiences in my life that would be great to share with others so they could understand or learn! If I could tell my employer, we could all learn a lot from each other!

This forum is a place where I am free and it is normal to have schizophrenia. I feel liberated to be able to discuss and write about the fact that I have had significant delusions and confusing thoughts that have destroyed my life. I have written about my experience of weight gain (which, through the recommendation from my psychiatrist to a good program and plan, I have been able to manage), I have written about dating, about thinking I was fine and getting diagnosed again, supports, branching out and playing sport and other things that have cropped up over time since I have been diagnosed.

Because it is Schizophrenia Awareness Week, I feel like I can post something freely. I even put on my own socials, 'Happy Schizophrenia Awareness Week' which is the closest thing to being public I have ever done. There is a huge mountain of emotion, such as shame tied into my illness and dealing with all my years of not being medicated. There's the identity I give myself as someone with a 'fault' or who is 'less than normal'. There is genuine confusion about what is real and what isn't. There is doubt and self loathing at losing control of my mind. There is a real fear, every day, that it will come back and I will lose everything again.

I would love to be like a Peer Ambassador or someone on You Can't Ask That. I would love to be an activist or someone who could advocate for people living with mental illness in the spotlight. I would love to write a book and connect with people. I can't though, because I am still so afraid of stigma. My job is very important to my self worth and I have created a nice life for now. I also lied and said I didn't have any pre existing conditions so I could get a permanent job (I had said I did have schizophrenia once and my application was delayed six months and I had to get more than one confirmation I was fit to work, even thought I was working fulltime temporarily and meeting KPIs at the time).

All of this stuff! It's not easy.

I suprise myself by my resilience though. Through all of the wrestling with symptoms, with perceptions, with emotions and identity, with reality, with stigma and society, with the medical system and medications and with myself - I am well right in this moment and I consider myself to be happy. I keep learning and trying to prevent relapse by following recommendations from the doctors. I do 'therapies' such as writing in my diary to sort out what's going on and some meditation and I do other programs about healthy eating and quitting drinking alcohol. I talk to my loved ones as much as they will let me. I sometimes fake it till I make it to get through to a safer or saner head space. I am organised and astute and I never give myself enough credit for how I have managed and do manage everyday.

Having Schizophrenia Awareness Week is such a good thing for all of us! For those of us who live with it, hopefully the week can de-stigmatise schizophrenia and we can share our stories and diagnoses safely and freely. Thanks SANE.

29 replies

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In response to: My schizophrenia

Re: My schizophrenia

Thank-you for sharing, Rosie. As a Schizophrenic currently in recovery myself, I understand your struggles with the stigma attached to this illness. If nothing else, know that you’re not alone in this, and with time and on-going education made available to our communities about our illness, that we will someday live stigma-free and proud of the experiences we have been through and won.

In response to: My schizophrenia

Re: My schizophrenia

Hi I'm a new member and I have schizoaffective disorder, schizophrenia or an unknown disorder - still figuring it out. I was diagnosed in 2011 but have been recluse about it until 2016 when I started to take the illness seriously, ie taking meds. And only really started talking about it with family and friends and reading up on it. I'm hoping I can get everything under control by seeing counselors and my psychiatrist re. My illness and the stigma that comes with it. I'm hoping I can find a group where I too can share my experiences and feel like I'm not alone in all of this. To wrap things up your post was a glimpse of how I can turn things around and it was a positive and uplifting thing to read. So thank you. I'm hoping I can find some friends along the way to share my story with too.

kindest regards,

itsjustme1

In response to: Re: My schizophrenia

Re: My schizophrenia

Hello @Former-Member and welcome. If you are in for a social evening we have the The Weekly Friday Feast and would love you to join us. I'll duck in and tag you. There are lots of supportive members here and I can assure you that you will not feel alone. 🤗😊

In response to: My schizophrenia

Re: My schizophrenia

Why oh why do us with the misfortune of being diagnosed with schizophrenia feel like we are lepers.

Its due to others, that's why. I am completely enraged 😡Watched a recent episode of Ambulance, where in true uneducated media fashion, the poor guy with psychosis who is pleading for help is deemed potentially violent. For the love of god!

I work a full time job, I have a degree, I am married, I love fashion & I also have schizophrenia. However am I permitted by society to add to to the list..NO! For fear of the same reaction that particular television show portrayed. It must remain hidden so as to not upset others or have them begin to fear the person diagnosed.

Cancer survivors wear badges of honour. Does the media portray a cancer sufferer as it's their fault? That they are potentially dangerous or just downright nutty? I'm well & truly over it. Living a life of hushed tones from family members. Feeling less than worthy.

I am completely over it. Enough BS & stigma about schizophrenia. It's time society allowed us to come out of the darkened & at times scary closet & be proud of who we truly are...human.

Enough of my rant!

Have a great night.

In response to: Re: My schizophrenia

Re: My schizophrenia

Hello @Coffeelover

and

@Rosie @Anastasia @Former-Member @MinnaBee333 @Milk @myoctopus @Appleblossom @MinnaBee333 @Bezak482 @Judi9877 @Bunniekins @Eve7 @Anastasia @NatureLover @Mazarita @Former-Member @Emelia8 @StuF @Schitzo

@Phoenix80 @Queenie @Eden1919 @Teej @Libra @KAn1 @universepocket @Ayesha @Notsomentalau @Shazab @Shimmer @rogueone @R4012 @Fractured @Tracey

@Organism @Jennifer12345 @theaveragejoe @Hunter @1221 @crimson_celt

"

In responding to your post, I have invited a few people, some from a while back, along for the conversation, which may, hopefully, be productive.

"

It is my belief and understanding that this forum community is a place where we can each share our thoughts and feelings, sometimes our anger. Here people will listen, generally without judgement and with caring understanding, following that with any observations that they feel may be helpful or constructive. From an outsider's perspective, it seems that anger and rage really add to the negative perceptions in the "wider community".

"

If there is to be change, it seems to me that it has to be initiated "at Source", meaning by the people who are affected by this issue, rather than the therapists, counsellors, psychologists and psychiatrists. I can say, that even as a member of this forum, I know very little about the affects of schizophrenia and know little, if anything, about how a person deals with their own experience of schizophrenia.

"

I believe that this forum is a place where such changes can be explored. That the information, experience, confronting issues, can be presented in a way that allows others to give feedback and support. And in an environment where our own identity is protected by the pseudonym and avatar. The forum, while some of its function is to provide people with an environment for humour and simple courtesies and distractions from the everyday burden of their problems, can also be a place for ideas, presentations and formats to be developed and, when appropriate, be more widely distributed throughout the community.

"

I do hope that, as a person who faces other MH issues in my life, I am generally more understanding and empathic toward people, with a range of MI/D's, than others who are functioning "normally", or think that they are, and have little knowledge or contact with people who have MI/D issues. Some of the issues that I face, about which I sometimes can't be specific, partially because of lack of attention and treatment earlier in life, when I, as I am now aware, was not functioning in the way that would "normally" have been expected. So, towards the end of my life, I am trying to sort out the original issues and the tangle created in my life, because those issues were ignored, considered insignificant, or I thought that the way, and the conditions, under which I was living, were the same as for everyone else.

"

If I can contribute anything to your post, I hope it would be to encourage you and others in similar positions, to consider using the forum as a sounding board for ideas that may then be extended out into the "wider community".

"

With My Very Best Wishes

@HenryX

In response to: Re: My schizophrenia

Re: My schizophrenia

@HenryX

Your posts are always so elegant. Not to mention informed, inclusive and inspiring of thought.

I don't have a lot to add in reply. But I would reiterate the sense of a community here, that helps in many ways...And I'm grateful to be able to say that in this forum, my schizoaffective disorder has never left me feeling 'outside' or 'other' in my interactions. Hopefully we can expand such acceptance into the broader community over time. We as a society have already come a long way, but there is certainly still a long road ahead

In response to: Re: My schizophrenia

Re: My schizophrenia

Hi @StuF

Thank you for your comment Stu, very much appreciate the positive affirmation. Definitely helps to keep spirits up.

With Best Wishes

@HenryX

In response to: Re: My schizophrenia

Re: My schizophrenia

Hello @Rosie , as the initiator of this thread Thankyou for your presence and also the acknowledgement given by your "Support"

Thank you to @StuF , @Anastasia , and @Appleblossom for your encouragement and acknowledgement by "Support". And also, everyone else who has participated in this thread, Thank you.

With Best Wishes

@HenryX

In response to: Re: My schizophrenia

Re: My schizophrenia

Yes let's aim to de stigmatize sz and sz effective disorder outside of this wonderful, remarkable community.

That's on my agenda at the very top, and I will do what I can for as long as I am on this planet 💕

Together we roar

@HenryX @Rosie @StuF @Coffeelover @Former-Member @Appleblossom @Sophia1 all here 🙏

In response to: Re: My schizophrenia

Re: My schizophrenia

Thank for tags @Anastasia @HenryX

There is still so much work to be done re stigma of these illnesses. I still come up against stigma with people again and again, even who I thought were open minded, aware and sympathetic, but maybe do not want it in their backyard or their choir .... etc ....

@Coffeelover @StuF @Rosie

In many ways I identify with schizoaffective disorder and aspergers.

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