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Rosie
Senior Contributor

My schizophrenia

I have seen the Schizophrenia Awareness Week posts on the socials, thanks SANE. Smiley Happy 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 29
Former-Member
Not applicable

Re: My schizophrenia

Just wanted to say how beautiful this was to read and what a strong and courageous person you are @Rosie  ❤️🌹🌹

Re: My schizophrenia

Hi @Rosie - i wish schizophrenia would be de-stigmatised like you said - its gonna take a lot of work but it can be done. im a bit the opposite - i talk about my mental illness all the time so yeah i guess i dont really hide much lol - good luck with wanting to be an ambassador and stuff 🙂

Re: My schizophrenia

@Rosie 

Hello Rosie,

 

I am so pleased that I clicked the link to your post and the details of your journey.

 

Your statement that:

All of this stuff! It's not easy.”

will I am sure, 'strike a chord' for many people on the forum as it does with me.

 

Today I have used the words “Strength, Resilience & Courage” in a way intended to spur another member on towards improving their life. With what you have written, more words come to mind, like Tenacity, Determination, & Fortitude.

 

Your post was a pleasure for me to read because you described how you have dealt with the illness of schizophrenia in a real, sometimes raw, but very inspiring way.

 

I would not be known on the forum as a short response writer. However, I think that it would do injustice to your presentation to write a longer response.

 

Thank you, and I hope that the other members and I will have the opportunity of 'hearing' from you more in future.

 

With My Very Best Wishes

HenryX

Former-Member
Not applicable

Re: My schizophrenia

@Rosie 

 
 
Thank you for your words. As someone with SZD, I can relate to your experience. 
I am certainly a lot more open about my experience here than I am to my family, friends, and general people. 

Re: My schizophrenia

@Rosie  I'm very impressed with how you handle your MI, and also your writing skills - you write beautifully. It was a pleasure to read, thank you for sharing. 🙂

Re: My schizophrenia

@Rosie thank you for sharing x

Re: My schizophrenia

Hi @Rosie 

Thank you so much for writing about Schizophrenia Awareness Week and your experiences. Like you, I have schizophrenia as 1 of my mental illnesses and I'm often scared to tell people about it because of stigma and discrimination. Well done on being brave and sharing your experiences!

 

Take care forumite.

Judi9877

Re: My schizophrenia

@Rosie

 

Thanks so much for this!

 

Beautifully put.

 

Same here re: holding down a full time job without disclosure of schizoaffective disorder in my case. I think society has a very long way to go in accepting people on the higher end of the mental health spectrum in the workplace - perhaps some concious or sub-concious bias out there in 'normal' land. Some inroads have been made with Autism spectrum acceptance so there's hope that we can get some momentum too. Schizophrenia week helps.

 

Disclosing a serious illness like Multiple Sclerosis I feel is no problem - MI should be no different and we should definitely not be discriminated against if we can do the work! Sometimes I feel like a persecuted minority. If we become unwell for a time due to illness (think MS relapses) it's not unreasonable for us to expect some support from employers. That's my two bits anyway.

 

You mentioned a will to put yourself out there a bit but are afraid of stigma. There are peer support groups out there if you ever want to get involved with like minds beyond this forum, Sane could recommend. I'm in one and find it feels good to help others (and myself).

 

Congratulations for looking after yourself and doing so well 🙂

 

Re: My schizophrenia

So much admiration for you @Rosie and @Bezak482. I spoke to One Door today, a beautiful soul...hoping they can help. Looking forward to the talk on here. Its nice to meet you both 🙏

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