Protecting Yourself From Relapse After Psychosis

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I am a lucky person when it comes to having schizophrenia. Antipsychotics work so well for me that over the course of more than two decades, I have never had a psychotic break while on an antipsychotic. In fact, I haven’t experienced any symptoms of schizophrenia either while on medication over the past 25 years. However, I recently switched antipsychotics to an unusual one to try alleviating a side effect, while also experiencing a particularly stressful period of my life. I suddenly had some auditory hallucinations that made me concerned and alarmed. For the first time in my life, I experienced something that has never happened to me while on an antipsychotic, where I knew I had to tell my psychiatrist in order to best prevent another psychotic break from happening.

I had mixed emotions about contacting my psychiatrist, even though he’s the best psychiatrist I’ve ever had, and I’ve been going to him for 12 years, ever since I had my last psychotic break. We trust each other, and he’s always made good decisions for me. Yet, I still fell into common mental traps about admitting my concerns to myself and reporting them to a medical professional.

Minimizing Your Observations and Dismissing Them

You don’t want to admit to yourself that you could be relapsing, because it means so much to all of us to think we have recovered, have made so much progress, and will never have to go back to that level of pain and personal damage. Part of feeling normal and good about yourself is this belief that the unfortunate period of your life is totally over and there is no reason to fear that it could all happen again. That’s how so many of us keep going and believe in ourselves again. You can’t bear for this to be happening to you again, so you tell yourself it really isn’t. Or you say, if it starts happening on a regular basis, or a second time, then I’ll tell my spouse, friend, or parent about what’s happening. And only if it gets really bad, do I contact my psychiatrist. However, this isn’t necessarily the best strategy. It is better to tell your provider what is happening immediately. That can be difficult when reluctance and fear in seeking help and stigma itself contribute to poorer insight during early warning signs of a relapse.[i]

What is happening is real, whether you like it or not, even if it is super inconvenient. Keeping what’s happening to yourself doesn’t make what you are experiencing any less real or less indicative that you could have another psychotic break. You can kid yourself or deny your symptoms, but it is what it is. And the truth is that for anyone, even someone like me who was completely symptom-free for over a decade, it's important to be careful and be a good observer. Having a symptom after all this time was also a confirmation to me that I am doing the right thing by being on medicine for life because what I have is chronic.

Common Myths About Contacting Your Provider

I realized I was hearing something that wasn’t there, and then I lost trust in myself about what I was actually hearing and what I wasn’t late at night when I couldn’t sleep. I hesitated contacting my psychiatrist, because I equated that irrationally with "getting in trouble" and doing a potential psych ward visit. Part of the difficulty was admitting reality to myself, and part of it was admitting it to my psychiatrist who documents it. That’s when it seems really real and that there is no going back. So even though it has been over a decade since my last break, and I have such a great, trusting relationship with my psychiatrist, I fell into common traps and fears about telling my provider about what was happening.

You can also think you know what the psychiatrist will decide to do, based on your own limited knowledge of psychiatric medicine and assumptions motivated by fear. The truth is, you are not a professional when it comes to medical decision making, even if you are like me and have been taking antipsychotics for 25 years. I assumed, out of fear, that if I told him, it would mean I would have to go back to my former antipsychotic, which gave me a bad side effect, the same side effect I’ve had with every other antipsychotic I’ve ever tried over the past 25 years. This new one I am trying is the first one in all that time to not cause the side effect, so I want to believe so much that it will work long term.

Having a Real Dialogue With Your Provider Can Pay Off

Contacting your provider can pay off. The provider has the chance to hear you and make a great decision for you, one that you could not have necessarily thought of yourself, which saves you from further heartbreak and damage caused by psychosis. My provider kept me on the new antipsychotic I prefer but just increased the dose. It turned out that I was given an option that I not only felt good about and agreed with, but he also reassured me that while I was having a questionable symptom, he thought it was highly unlikely it meant I was going into another break. So, I let him have a real dialogue with me and let him draw his own conclusions without my assumptions getting in the way. In doing so, I received reassurance that I’m most likely safe but that we are upping my dose just to be careful. And not only was this a solution I like that still prevents a side effect I don’t like; it also solved my problem where I am now symptom-free again.

I've known of others who experienced psychosis who kept dismissing and denying alarming symptoms of a relapse until it was too late. In fact, knowing those stories helped give me the courage to contact my psychiatrist. The longer you wait and stall on contacting your provider about concerning symptoms, the harder and longer it is to reverse the course of symptoms. Also, antipsychotics may not respond as well following a relapse.[ii] So, contacting your provider as soon as you can is a powerful way to advocate for yourself, get the medical intervention you need without having to go to the psych ward, promote your longer-term well-being, and sometimes get a reassuring opinion that puts you at ease. You can’t play out what will happen with your psychiatrist in advance, and you can’t assume what they will think and do. It is worth giving your provider a chance to show you they are on your side.