HPPD is not schizophrenia

I attended a virtual HPPD Support Group on Friday, and I was struck by the number of people who reported feeling, at some point or another in their journey with the condition, the fear that they had developed schizophrenia or psychosis. This fear seems fairly common in the community, at least from scans of the HPPD subreddit. 

This blog aims to make two things clear:

1. HPPD is very different to schizophrenia or psychosis

2. Fearing schizophrenia or psychosis is not rational or helpful, but the fear ‘makes sense’

First: why might someone with HPPD fear they were developing schizophrenia?

• ‘Seeing things’ is associated with schizophrenia and psychosis in the lay imagination

• ‘Triggering schizophrenia’ and psychosis is an often-discussed risk of drug use, especially psychedelic drug use

• There are well-covered stories of musicians from the 1960s and 1970s who developed schizophrenia or related mental illnesses through the use (usually abuse) of psychedelic drugs

• People who develop HPPD tend to be young, and late-adolescence and early adulthood tends to be the age range during which schizophrenia and first episode psychotic breaks first manifest

• Depersonalisation-derealisation (DP/DR) can make people feel like they are ‘going crazy’, because the world feels unreal and dream-like, and they feel very separated from their bodies and ordinary sense of self

• Antipsychotic medications - the usual prescription for people with schizophrenia and psychosis - have been prescribed, sometimes successfully and other times unsuccessfully, for those with HPPD

• There can be overlap between the two sets of conditions

• Doctors and clinicians unaware of HPPD may appraise the possibility you are experiencing psychosis, or diagnose with a psychosis-spectrum disorder

The thing with anxious thoughts is that they often emerge from a seed of truth or possibility. Indeed, all these things combined may seem to make a reasonable ‘case’ for schizophrenia, but the reality will likely be the opposite. You can see more about this in our Information Guide.

1. HPPD does not involve delusions

   • People with simple HPPD do not believe things or hold ideas that are completely ungrounded in evidence or are bizarre

2. People with HPPD do not experience true hallucinations

   • ‘Hallucination’ occurs when there is a perception of something without external stimulus that is believed to be real. HPPD is usually designated as non-psychotic, because those meeting the criteria usually recognise their visual effects as not strictly ‘real’ but reflecting changes in their visual processing system

3. HPPD does not involve thought disorder 

   • ‘Thought disorder’ is a symptom of schizophrenia that affects the way people can relate ideas and communicate

From: BJPsych Advances , Volume 23 , Issue 5 , September 2017 , pp. 321 - 323

DOI: https://doi.org/10.1192/apt.bp.116.016071

Schizophrenia is a complex mental health condition with a range of symptoms beyond ‘seeing things’. Other possible symptoms include:

• ‘Flat affect’, or emotional expressionlessness

• Complete isolation

• Restricted body movements

• Impaired working memory 

A personal story

I’ve experienced these fears myself. They began about nine months after I first developed HPPD, when I started exhibiting a strange new symptom. For a second or two at a time - and unpredictably - my vision would blacken and be coated with coloured stars: explosions of green, yellow, red, blue, against a dark canvas of space. My most vivid memory of this phenomenon was when leaving my room in university accommodation, opening the door to step into the carpeted corridor. And bam. 

I was terrified that my new symptom indicated a progressive disease, which would eventually culminate in schizophrenia. Looking back, though, I can see the real drivers at play: 

• Isolation and anxiety at university, which created mental hypochondria, monitoring and panicking about new symptoms

• Stigma around schizophrenia: as well as misunderstanding (misdiagnosing myself for not knowing the above differences), it was also a problem of stigma from myself, thinking that this would make me broken and that others would now judge me 

‘Going crazy’ and DP/DR

The fear of psychosis and schizophrenia becomes especially pronounced during a depersonalisation-derealisation (DP/DR) episode, which affect many people with HPPD. While it may really feel like you’re ‘going crazy’, this feeling is not uncommon and there are ways to overcome it. In her work around DP/DR, Dr. Elaine Hunter of the nonprofit Unreal and the Depersonalisation Clinic frames these feelings along the lines of Cognitive Behavioral Therapy (CBT).

Rather than categorize DP/DR as a dissociative disorder, Dr. Hunter and her colleagues designate it as an anxiety disorder driven by a basic ‘error’ in information processing: rather than looking at the particular, situational triggers for these feelings, the chronic DP/DR sufferer defaults to the worst possible options (the catastrophic triggers).

As you can see in the graphic below, people with DP/DR - as they often do with HPPD - will conclude from the panicky feelings of unreality that they are ‘going mad’, ‘losing control’, that the world really isn’t real, they are suffering ‘brain damage’ - rather than the more material triggers of the spike in anxiety that drove those thoughts. These thoughts may even provide temporary assurance, but they make the underlying anxiety and, in turn, the DP/DR worse. This cycle can be exacerbated through avoiding triggering situations, seeking false safety in certain behaviors, and obsessively monitoring for symptoms. 

From: Hunter EC, Phillips ML, Chalder T, Sierra M, David AS. Depersonalisation disorder: a cognitive-behavioural conceptualisation. Behav Res Ther. 2003 Dec;41(12):1451-67. doi: 10.1016/s0005-7967(03)00066-4. PMID: 14583413.

Just recently, I put this tool to good use when returning from a run, which made me feel fatigued. The world felt less and less real and I worried about how I still had DP/DR, despite assuring myself in the weeks prior that I had recovered. Then I considered this situationally: what if I am just tired, and this is how fatigue presents itself? I accepted this possibility and the scary, looming fear of DP/DR went away.

Conclusions

While schizophrenia and psychosis are understandable fears for those with HPPD and/or DP/DR, the conditions are very different. There can be overlap, though, and if you are exhibiting symptoms more akin to schizophrenia, you are advised to consult with your nearest suitable clinician.