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Lotje has doubts about the use of antipsychotics. But at the same same time, she doesn’t want to reduce her dosage. She has found herself in an impossible situation. “I have my doubts about the usefulness of the medication, but there is no room for pacing myself.”

I have a younger sister. My father used to play a game with her. They would ask each other if they’d rather be deaf or blind. Which would you prefer, and why. This is now known as the Tuesday talking point. On social media, whole pages have been dedicated to this. The essence is that you have to choose between two very unattractive options. Your mother has to give you a bath each week, or you have to reply to all your spam emails. That sort of thing.

I haven’t had a psychosis for 15 years, but I am still taking antipsychotics

So they’re doing their job, you might think. But I am unsure about the usefulness of the medication. I am often frightened and catch myself thinking I would be much better off living a parallel life without the medication. That I would need less sleep, and would be less anxious. After 15 years, you don’t know any more. I am starting to think that my anxiety is troubling me more than my disposition to psychosis.

There hasn’t been a single psychiatrist who said to me: Don’t you want to try to wean yourself off (the medication)? Not after 5, nor 10, nor 15 years without an episode of psychosis. I think they are all afraid of it. Because there is always going to be something that will cause me to be unstable. Because that’s just life. Because they see people going down the wrong track. And that’s why I’m afraid of it as well. I am very sensitive to the trust that other people put in me. I’d rather hear them say: “You’ll be alright, just give it a try! And if you fall flat on your face, we’ll be here to help you up.”

I do only take a low maintenance dose

So the whole discussion about too much medication may not apply to me. My initial open-mindedness to antipsychotics has evaporated over the years. I wouldn’t dare to experiment with my doses anymore, something I have done in the past. Usage as required . When I tried to reduce my medication by 1 milligram(!) in 2019, I became very anxious and suicidal. I wasn’t taking antipsychotics to feel like that! I think it is the nocebo-effect. By then, I’d read so much about side effects and problems with reducing antipsychotics, and it has become a self-fulfilling prophecy. Though the chances of this are in fact, very low.

And I really cannot deal with that – having suicidal thoughts. My life is complicated enough as it is, even my daily routine takes effort sometimes. I have a husband and two young children. I take care of the house and do charity work. There is no room for taking things easy and slowing down for a bit. To figure out what works best for suicidal thoughts brought on by the effects of reducing medication. I am very frightened of a new psychosis or disruption. That would be very inconvenient. And I’m doing alright with my medication. I am not that desperate.

But meanwhile, I do worry about it

About brain damage because of antipsychotics or how it will be when I’m 60. About the effects of addiction to the antipsychotics. About oppositional tolerance. And about how I can optimise my everyday life. Would I be able to live with less anxiety, or is that an illusion, life without fear? Would a life without medication be better? Is a life with medication less meaningful? No, right? Then does it always have to be better? Isn’t that a pitfall? Yep, worrying seems to be my default setting.

What works for you? Accepting the situation as it is, or continuously striving for progress?

Lotje is a valued family member, a listening ear for friends, a runner, a retired history teacher and Italian teacher.

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