I’ve been thinking a lot about the day that doctor diagnosed me with schizoaffective disorder in 2018. I remember the terror and shock I felt. I remember how I never went back to him after trying the meds and getting worse, and then stopping. I remember how I thought he was a reptilian out to get me and keep me from shining my light. I recently found an account on TikTok of a man with the same diagnosis, and while his hallucinations are different than mine, I’ve been finding so much peace in listening to his experiences and thoughts on it. It’s a confusing time as I’ve had so many diagnoses and often feel ashamed for sharing so openly, only to start pondering and obsessing about something else a few weeks or days later. I suppose that is all part of the mental illness. I think deep down, I’m just trying to find other people in the world who are like me and that’s easiest when you have a name for it. At this point, I’ve been in and out of the medical and psychiatric system for so long, and with so many different opinions on the way my brain works, that I just don’t know if I trust any of them anymore. I think people who share their experiences are probably the best resource out there. 

People remind me that I’m just gifted, a lot. And I want to speak to that a little. I think listening to this other person’s content has helped me understand myself so much better in this way. It has confirmed my own theories that there is a giftedness present in schizophrenia or affective disorders, even autism, which I am still certain I experience as well. It makes sense to have so many things overlap and I feel neurodivergent is just the best way to describe it. It just gets confusing having so much going on. It takes all my energy most of the time. But this giftedness has another side because it does not FEEL like a gift. In one of his videos, he talks about the hallucinations (which can be visual, in the mind’s eye, feelings, auditory, etc) and how a person experiences them. For example, if a person does not have support or healthy love in their lives, the experience of this “gift” can keep them ungrounded and it’s not going to go very well. And I can attest to that. I think this is why, during times in my life when I’ve had supportive friends or family, that I’ve been able to stay in my flow, create easily and serve others with my gifts. 

But during those times of trauma, abuse and feeling really alone, I spiral down and the voices, visions, feelings turn in on me. I become paranoid, delusional, untrusting of myself and others. It takes all my energy to do basic tasks or to ground myself continually. I have a lot of conversations with the darker parts of me that want me to believe everyone is lying to me or that no one cares or that there is a grand scheme to keep me quiet. Maybe there is, maybe there isn’t. But that’s the thing, I’ll never know, so I get around this by telling these parts that it doesn’t really matter in the long run. I also believe that because I am so intimately in touch with these darker parts of me, or beings that I see, hear and feel, it has helped me not go off the deep end and lose everything I have worked for. I accept them, and know them and I love them. 

There is a wise part of me that I struggle to hear sometimes. It has come to me in many shapes and forms. Sometimes just a soothing voice. Underneath the cacophony of nonsense that I can hear every day. It says that it doesn’t matter if it’s real or not. My experience makes it real and I was so excited to hear that other person talk about this as well. Because it confirmed something really special for me. That it’s not as scary as I once believed to experience this, if it is a mental disorder. That it’s mainly the current culture that makes it seem scary or abnormal. That with support, love and meds, if you can tolerate them (I cannot), one can flourish with this type of brain. One that can bring what’s invisible to life and share it with others. And maybe we don’t all struggle with the same things, but I think we have more in common than we know. Because when I make art of what I experience and see and hear, other people find something in that. There is a universal thing that’s happening. To some, it’s uncomfortable because maybe they haven’t deconstructed their own shadows. But to others, it is a balm to see something so private and deep that maybe they’ve never shared with anyone, on paper or canvas. 

I’ve tried to make myself into a lot of things that didn’t really fit me. I think that’s just what you do until you realize that you can only be who you are. And I don’t think there are labels for that. There are just shared experiences and struggles. For as much as I experience darkness that wants me to believe nothing matters, I also experience ecstatic joy and love that actually hurts my whole body to feel it. I feel very deeply, no matter what. Sometimes the wrong parts of me drive the bus and I’m working on that the more aware I become. Sometimes I feel like I’m doing everything wrong and I am very wrong and shouldn’t exist. And sometimes I feel so beautiful and connected to everything that is. Honored to be able to see and experience life in a way that feels so different than what I observe in others. 

As I learn more about myself, I am also learning where my boundaries need to be. Especially because meds make me feel worse, I have to be very cautious who I let into my life, even what I consume on social media. Little things plant a seed in my brain that can make me spiral so fast. During times when I feel the most fragile, after trauma or abuse, I have to really remind myself that I cannot do the same things other people do. I want to feel as stable as possible, so I have to be really mindful of my energy and attention.

I’m also very grateful to my loved ones who have never made me feel like anything less than a whole beautiful human no matter what I’ve shared with them about what I see and hear. It’s been a particularly dark and hard time these last few years and my inner circle has kept me going in ways I’ll never be able to articulate. 

This Post Has 6 Comments

  1. Eva Luursema

    Hi Carrie,

    I’m not sure if this is the right place to say this – but my partner (for whom you made a spider spell), is also diagnosed with schizo-affective disorder and autism. Many of the things you speak of, I recognise in him.
    Both him and me have dealt with narcissistic abuse and , well, I thought it might be good to tell you. It’s not easy to talk about- much respect for your openness! If you would like to ask about things, please do so.

    Love, Eva

    1. Carrie

      Eva! That is amazing! I’m so glad to know this. I was researching if anyone had both and it’s very rare apparently! Which would explain a lot. And yes it is vERY hard for me to talk about this. Especially my delusions. I feel people will hate me if I admit it. I might be messaging you with some questions! This has moved me greatly.

  2. juliemontinieri

    Carrie, I’m glad you found someone you can relate too. By sharing it in this lucid piece, it looks like Eva has someone else you can compare notes with. Your candor paying off. Lots of love and HAPPY BIRTHDAY!

    1. Carrie

      Thank you Julie!

  3. Martijn van der Zon

    Your bravery pays off. We are not taught to embrace our unique totalities. We are taught how to behave, how to trade in our authenticity for acceptability and woe unto those who refuse that bad deal. I wish for you that you soon find as much acknowledgement as you need to shed the rest of all those layers of abuse and failing opinions of so called experts, to completely and fully embrace your uniqueness. No more wasting energy on self doubt. No more wasting energy on futile self defence. Just do as you f&€#ing please under the (short) protective wings of your patron saint!

    1. Carrie

      Yes! I see the doorways into freedom and pass thru several a day lately. Only to realize there is nothing more to do or believe, but rather, just be, with every breath. I laugh a lot at how hard I’ve made it and also there is grace and I marvel that I can see any of it at all, after such violence to my person. Thank you for your encouragement

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