Understanding and Managing Lupus Psychosis

How Lupus and the Brain Go Hand-in-Hand

Lupus psychosisPsychosis is a mental disorder characterized by a disconnection with reality, where thoughts and emotions are impaired. It can be mild or severe and present itself in many different ways.

This abnormal thinking and feeling can lead to delusions (false beliefs), hallucinations (false perceptions), and disorganized speaking and behavior. So what does psychosis have to do with lupus? Well, a lot more than you may realize.

I have personally experienced moments of psychosis during my battle with lupus. Initially, I was embarrassed — afraid that it was a sign of weakness and instability — or worse, that I was just plain messed up! However, I have learned that I’m not alone and there is no reason to feel embarrassed or ashamed.

It is real and perhaps some of you have or will experience some type of psychosis in relation to lupus. It can be difficult to discuss and scary to reveal, but it is imperative to seek help if you start to notice yourself losing touch with reality.

‘Your Brain Starts Playing Tricks on You’

Allow me to give you an example of what this might look like. It’s a perfectly normal day and your phone rings. You look at it and see that it is your dad calling you. Under normal circumstances, you would probably answer the phone, happy to hear from a loved one. But in a state of psychosis, your brain starts playing tricks on you.


Why is he calling me? What does he want? Did I do something wrong?

As the phone continues to ring, you feel your heart rate speed up and your mind plays out absurd scenarios in your head; you become convinced that something catastrophic will occur if you answer the phone. The ring finally stops, but then you hear the voice mail notification and you are overwhelmed by anxiety.

Do I listen to the message? What is he going to say? Will I have to call him back?

You decide to ignore it and try to forget that you have a message waiting, but it continues to haunt you, torture you, mock you and tease you. Finally, almost in tears, you hold your breath and with shaking hands and you press “play.” I know, it sounds ridiculous, right? But for a person dealing with psychosis, this situation is very real.

During states of psychosis, I have been known to exhibit erratic behavior, send text messages that do not make sense, post status updates to Facebook that are out of character for me, have strange conversations with loved ones, become consumed by weird thoughts and paranoia, experience blackouts, suffer from confusion, headaches, and speech difficulties, hyper-focus on insignificant or unimportant things, struggle with massive mood swings, and neglect the necessities and responsibilities in my life.

Next page: Brandy shares her personal experiences with lupus psychosis 

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