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There’s More to My Schizophrenia Than Voices and Hallucinations

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With my recent medication change and more recent medication increase, I am reminded that even more than I am bombarded with voices and occasionally visual hallucinations, I am plagued by a lack of energy, motivation and sex drive.

Schizophrenia — more specifically for me, schizoaffective disorder — is far more than positive symptoms. I have found in life, the media and among my peers and family, an over-association of these positive symptoms when discussing and understanding not only my schizophrenia, but schizophrenia as a disease that affects many others. People often assume that if a person with schizophrenia is not actively psychotic or hallucinating, that they must be doing well. That, for some, is just not the case. There are days when I have to fight, really truly fight, with myself to get anything done. I just don’t have the drive, the motivation to do something as simple as a quick homework assignment, or the dishes becomes a monumental task. Some days I feel like I’m floating — like I’m outside of my body, and unable to connect enough to even get dressed. Other days I am filled up by a great void, so deep and dark that I have to go looking for myself again. Through dialectical behavior therapy (DBT), I have learned to cope with my hallucinations. I learned to process them in a way that allows me to live with them instead of fighting against them. But those negative symptoms, no amount of coping or mindfulness fills me with the energy to get done what I need to get done. It is a wonder I haven’t fallen behind. I spend most of the day fighting with myself over 10-minute tasks, half asleep, wanting to give in but forcing myself to get out of bed instead. And it isn’t easy.

How do you describe a complete lack of motivation? It is an absence, a wanting, a needing, but not being able to find. It’s wishing someone had tied a rope around your waist so that you could follow it back. It’s needing to do something and just being unable to do it. It’s wrestling with an invisible part of yourself. And it’s unending.

I’m good at keeping up appearances. The house takes an hour to clean and I spend six convincing myself to get up and do it. But, eventually, it gets done. It’s easy to take a pretty Instagram photo and sign below it a beautiful caption. Nobody has to know. Even if they did, I wonder if they would truly understand.

You hear a lot of people say, “It’s OK if all you did today was breathe.” But they don’t understand the shame of just breathing while the world seems to move on without you. It is OK if all you do is breathe. Sometimes all you can really, honestly do, is breathe. It’s OK if all you did was the shower, or tackle a few dishes, or finish one homework assignment. It’s OK even though it doesn’t feel OK. I think so often people who say these things don’t understand the incredible burden of illness. The incredible burning of trying so hard and still getting nothing done.

I understand.

And it really is OK.

Just breathe.

Tomorrow isn’t going anywhere.

Originally published: November 4, 2020
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