My “Strength From Scars” through Psychosis, Antipsychotics and Tardive Dyskinesia

I am an open book because (1) it grants me freedom, and (2) it chips away at the mental health stigma, making it easier for the next person to come along and share their story without the fear of shame or exclusion. We are all one community, and we must all support each other; however, scaffolding is required to support the structure of our community, which is decayed and needs soothing and healing. This must be done according to compassion, empathy, and understanding. On that basis, I provide you with my story of psychosis, antipsychotics, and Tardive Dyskinesia (“TD”).

'STRENGTH FROM SCARS' - Robert Charles Kavanagh

Published in

The Newosis Journal

14 min readNov 11, 2022

(I have faced severe mental illness throughout my entire life, from childhood, through my studies, into my careers in music and the quirky technical field of corporate tax law, as well as tertiary academia (and I’ve even had a few relationships along the way). I did unravel messily, but “seared with those scars,” I’ve come back with the strength and determination to dedicate my life to help soothe and heal people who’ve experienced pain like me. I do so according to a framework of compassion, empathy, and benevolence, from the “lived experience” perspective)

I wrote an article about my (ongoing) experiences with Bipolar Disorder Type 1 a few months back and received some incredible support, and the article was viewed several thousand times. I thank you from the bottom of my heart for that. However, that was only a tiny part of my story (and when you get to the end of this article, there is plenty more to come!). I described the mania and some of the psychotic episodes I have endured, but there are some things that I have never addressed. I need to lead this particular discussion I am about to have because when I looked for information as a “first-timer” (some years back), there was no one around. However, this has improved since then, and I applaud all the “peer support” champions in the mental health arena, but there remain some gloomy gaps we need to keep shining the light on.

A few friendly announcements before reading my article:
This article contains uncomfortable themes including the abuse I suffered (as a child and otherwise) and my experience of severe mental illness (including psychosis). My email address is at the bottom of the article if you would like to reach out.
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For my acknowledgement of the traditional owners of Australia’s land, please click here: Acknowledgment to First Nations Peoples of Australia

SOME BACKGROUND TO PSYCHOSIS:

(My brain already had to cope with stressors beyond most people’s wildest nightmares. My nightmares were in real life, and when I fell asleep; but even so, I am now amazed as I look at “little Rob” and marvelling at his resilience through pain that would become the very thing that kept him/me/us alive)

Dr Dandy Andy (de-identified) was great at talk therapy, the best child and adolescent psychiatrist in the state. Do you know how I ended up there at the young age of 8, however? Nightmares! Little did the Doc know (at first) that I came from an abusive family (experiencing “complex” abuse from a range of perpetrators since around the age of 3). He tried to soothe and heal the problem before him: I could not sleep, or I had night terrors when I did. I would also go into an eventual parasympathetic response by “flying” from my bed to crouch in the corner at my door and “freeze,” with no ability to scream or shout for help. It was TERRIFYING. I was utterly paralysed (Westmeria, 2019).

Commonly associated with a state of relaxation, our parasympathetic system counterbalances the physical effects of the stress hormones flooding our body. This process triggers a frozen state, our heart rate and breathing slow down, and we may find that we hold our breath (Westmeria, 2019). It is commonly triggered by sexual abuse or assault, often explaining how the perpetrator can quickly and effectively make their advances. We now know that this was inextricably linked to my complex PTSD that was undiagnosed at that time (and for several more decades before I opened up about my extensive sexual abuse and assaults).

In early high school, I was on a combination of Xanax and Tofranil (both now considered ancient). There was a period of a few years or so that I did not see the Doc again. Then into high school, the nightmares, anxiety, and other issues were coming to the fore, and I went back to him, and he treated me with more anti-anxiety medication.

(It is hard for me to look at this photo and remember what was going through his/my mind)

So, all of this was happening. Then suddenly, I did not want to see the Doc again. Things started to unravel. As I have mentioned in other articles, I started hallucinating (auditory and visual) of a religious nature — it was referred to as a form of “hyper-religiosity” — in other words, I could see, hear, and feel spirits (including the Holy Spirit, Mother Mary, and Jesus Christ). I also began hallucinating about my mum’s (deceased) family (who were unknown to me). This coincided with “fits” of rage, anger, and energy, interspersed with pitfalls of doom, gloom, anguish, and suicidality. The only constant throughout was a high level of musical and academic achievement.

On top of this, I had begun to smoke and drink alcohol (stolen from home — a combination of escapism and taking control). I was a straight-A student in year 11 (destined to become a prefect). My closest buddies went to the school counsellor (when I look back on that, I rate that as hugely mature and compassionate). The school counsellor said, “You have got to go back to the Doc!” (Although my troubles ensured I was not given the privilege of becoming a prefect, I still left the school as Dux, with one of the highest year 12 results in the state, and awarded a Charles Hawker Scholarship for my university studies— I have no idea how I did it — but it was something that “came out of thin air” in the context of what was going on inside my brain overall.)

FINALLY, BEING BRANDED A “PSYCHO” BY THE EXPERTS:

“MANIC-DEPRESSIVE PSYCHOSIS” — I will never forget hearing those words like my head was an echo-chamber: “Psych”— “Manic” — “Psycho” — “Psycho” — “Psychosis” — “Mania” — “Depression”— “Psychosis” — “You’re a Psycho. You’re Psycho. You’re a Maniac” — “You’re always depressed.”

You see, that is how my mind worked. It spoke to me as if my soul was separated, and the putrid, haunted organic mind had its hands all over me. I had just heard the Top Doc tell me I was a Maniac and a Psycho who was Depressed. That is how my 15–16-year-old brain processed it. Moreover, I was DEVASTATED. I thought a diagnosis of Schizophrenia was coming my way, so I was primed for that (through reading about it for myself and identifying myself amongst its traits), but Manic-Depressive Psychosis floored me. Nevertheless, in all honesty, I think any diagnosis would hurt (of course).

Manic-Depressive Psychosis was the “old-fashioned” pre-curser to Bipolar Disorder Type 1 (thus including the Mania, Depressive and Psychotic states). For some reason, I believe when I was 15, I would rather have had the diagnosis named “Bipolar” because it simply tells the person hearing your “label” that you are “up” or you are “down” — and that is pretty normal. At the same time, Manic-Depressive Psychosis is like you belong in a padded cell (well, sometimes one does — but I will leave that to one side for the time being).

For this article, I shall concentrate on the “psycho” parts.

Typical examples of what a psychotic person could do include experiencing false sensory input (hallucinations) or holding notions or opinions at odds with the facts (delusions) (these might be referred to as “psychotic symptoms,” “a psychotic episode,” or “a psychotic experience”) (NAMI, 2022; MacGill and Tee-Melegrito, 2022). Schizophrenia, schizoaffective disease, personality disorders, and bipolar disorder are only a few ailments that might include psychotic symptoms. A person need not suffer from these diseases or conditions to have psychotic symptoms (NAMI, 2022; MacGill and Tee-Melegrito, 2022).

NOW THE ARTICLE STARTS (PROPERLY)…

(Where did life on antipsychotics get me?)

I have given you the biggest side-ways and comprehensive introduction to inform you that I had to take antipsychotic medication from a very young age because I suffered from psychosis as part of my overall illness. I have already written elsewhere on the mood-stabilising drugs I have to keep taking (for me, it is a combination of Sodium Valproate and Lithium).

MY LIFE ON ANTIPSYCHOTIC MEDICATION:

I have never spoken of antipsychotics because of STIGMA. Furthermore, I know people will be reading this thinking, “how on earth can he be telling us all of this?” Well, it is easy, and that is because there was no one out there (open enough) for me to talk to when I needed the support most.

The closest I got to that was every time I went to the hospital, but you have to remember that this is when a person is at their worst and needs to concentrate on improving their mental health. So, having someone ask “lived experience” questions all the time (or any form of badgering) is not the correct etiquette. Patients are in the hospital to be treated, soothed, and healed. I can tell you that it is tough going into the mental health ward, not knowing who you can talk to and how much you should say. Still, usually, you find two or three friends that you bond with for the duration of your admission; and I have made a lovely group of long-term friends from my experiences in the mental health ward!

Although antipsychotic drugs are not a “cure” for psychosis, they are frequently helpful in alleviating and managing many symptoms. Paranoia and hallucinations (including hearing voices, panic and extreme agitation brought on by factors such as a perceived danger to one’s safety) are typical. However, a state of confusion and inarticulacy in one’s communication and reasoning, violent actions, disruption, and mania are other common symptoms (Mind, 2020; Patel et al., 2014). Antipsychotic medication may help the individual feel more stable and productive by reducing the intrusiveness and intensity of the symptoms rather than eliminating them (NAMI, 2022; MacGill & Tee-Melegrito, 2022). This is done by modifying the brain’s chemistry (MacGill & Tee-Melegrito, 2022; Mind, 2020; NAMI, 2022; Patel et al., 2014).

Mental health staff would snigger about the “Thorazine drops” from the patients’ mouths (as they meandered away from the medication dispensary). The clinical name for that drug was Chlorpromazine, and I was under its spell for some time. It made my life dull and “out of it:” like I was watching everything in slow motion through frosted glass (and occasionally drooling). Eventually, I moved on to Quetiapine (commonly known as Seroquel), and a particular psychiatrist saw fit to put me on an extreme dose (to be taken entirely at night). Whilst my sleep improved immensely for the first time in a decade, I had mid-sleep seizures (without any one-night stands, I might never have known!). The drug also began interfering with my cardiac system!

Eventually, I came to my current (incredible) psychiatrist, who (after a fulsome overhaul of my treatment plan) prescribed me a new antipsychotic, Lurasidone (also known as Latuda). But something unforeseeable and terrible happened.

I was sitting on the couch, waiting for the time to leave for my bus. I could not stop moving: shaking my hands, shoulders, mouth, and feet. The movement of my mouth was the primary concern because it was so intense: side-to-side and grinding, like one of those Sesame Street Martians, for real!

The above YouTube clip is how I saw myself!

“MUM, I CAN’T GO OUT OF THE FUCKING HOUSE. WHAT AM I GOING TO DO?”

was my reaction.

I could not sleep at night. I drooled uncontrollably.

Little did I know…

I HAD TARDIVE DYSKENISIA!

(The best thing about TD is you cannot tell in a photo)

Uncontrollable movements of the face and body are indicative of Tardive Dyskinesia (TD). It can induce involuntary actions, including lip-smacking, grinding, or the protrusion of the tongue (Casarella, 2020; Lloyd, 2021). The inability to take control of your own body is a source of immense and constant anxiety, and there is an emotional fallout from that; it is no wonder that people with TD feel ashamed and lonely due to the stigma attached to (1) the condition’s symptomatology and (2) its inextricable link to the heavy usage of antipsychotic medication.

Antipsychotic medications (also used to treat Schizophrenia, bipolar disorder, and other diseases related to the brain) are referred to as neuroleptic medications (Casarella, 2020; Lloyd, 2021). They inhibit the activity of dopamine in the brain, which (typically) facilitates communication between the cells and ensures that the muscles coordinate, which may lead to disablement, such as TD (Cornett et al., 2017; Matthews et al., 2005).

If you take an antipsychotic medication, you risk developing TD (Cornett et al., 2017; Matthews et al., 2005). You will most likely need to continue treatment for at least three months. On the other hand, there have been highly uncommon examples of it occurring after only one dose of antipsychotic medication. The issue is more likely to occur with older formulations of these medications (like the Chlorpromazine I was prescribed when I was younger, through to the Quetiapine) rather than with their more recent equivalents. However, other researchers conclude that the risks posed by both forms are comparable (Cornett et al., 2017; Matthews et al., 2005).

Being unable to control your movements makes it challenging to function in general, especially in employment or education (Casarella, 2020; Lloyd, 2021). Avoidance is a primary coping mechanism with TD (just as with Generalised Anxiety Disorder and Agoraphobia). Still, in this case, you have a physically visible reason for not wanting people to see you. People who see the motions may react negatively, including by laughing. An incorrect impression might be made on anybody who sees you (regarding your illness, e.g., an assumption that you may have Parkinson’s or Cerebral Palsy) (Casarella, 2020; Lloyd, 2021).

I WAS MORTIFIED. HORRIFIED. I THOUGHT MY LIFE HAD ENDED.

Isolation is a common side effect and may make you feel worse about your mental health. Isolation from loved ones may result if you’re too ashamed to deal with your symptoms in public (Casarella, 2020; Lloyd, 2021). I remember sleeping over at a close friend’s house, and we shared a bed, and I had to put a towel over the top of my pillow because of the uncontrollable drooling, not to mention the staring you have to go through in public.

Researchers have shown a connection between TD and a worse treatment response, a greater chance for relapse, lower quality of life, and an increased risk of early mortality (Casarella, 2020; Lloyd, 2021). If you suffer from TD, your chances of adequately treating your mental illness can decrease because of all this added pressure, your quality and duration of life will suffer, and carers may need to be required where movement is severe (Casarella, 2020; Lloyd, 2021).

I had so much difficulty dealing with TD, especially with the comorbidity with Agoraphobia. They fed off each other, and I was a prisoner in my own home for several years. Thankfully, my very empathetic and competent psychiatrist weened me off the Lurasidone over a long time, and eventually, one day, I noticed that the symptoms had calmed a fair amount. I was not grinding my teeth.

Nevertheless, I am left with the tremor. I always had one, thanks to Lithium, but now it is worse. Many people look down at my hands when they meet me, which hurts (and I know it is not their fault), but I have every right to wallow in my lousy fortune sometimes. I have been told I will likely never recover from TD for the rest of my life. The thing I miss the most is being able to handwrite in a journal. I cannot even sign my signature anymore.

So, whilst it may be emotionally taxing, you must have the support to be committed to therapy and continue leading your whole life. Medication adjustments, reduced doses, or the addition of medications designed to alleviate TD symptoms are all viable treatment options. Your psychiatrist and a neurologist who specialises in movement problems should collaborate to determine the next steps.

It is possible to lessen the severity of TD symptoms while concurrently treating Schizophrenia, bipolar disorder, depression, or other mental health issues (Cornett et al., 2017; Matthews et al., 2005).

Do what I did: get angry, research, and demand answers. That way, my team knew I had expectations about my care and could not stop until they were met. And yes, I still have TD and cannot sign my signature, but if I had not been weened off of the antipsychotics in the manner and class in which it was supervised by my psychiatrist, I would be in a far worse position.

I have been told, in no uncertain terms, that if my psychosis returns, I may have to go back onto antipsychotics, but hopefully, by then, they will have improved to the stage where TD is no longer a significant risk.

However, for now, life is excellent. I get about my laptop keyboard just fine and can run the Newosis Mental Health Foundation along with its extraordinary mental health team and other professionals; and I write (all the time!). I am not afraid to go out in public, so I enjoy my coffee, lunches, and walks in the sunshine! I have my mum, my family, and my pets.
Nevertheless, having “lived experience” grants me “strength from scars” —allowing me to help soothe and heal others through a true sense of compassion, empathy, and understanding; for which I am truly grateful. This is becoming the core of “who I am,” aged 45.

(Getting older, but coping better, and still smiling and ultimately doing my best, reaping the rewards, and handing those rewards on to others to help build a better world)

If this seems “dreary” or “depressing,” I need to assure you that despite my mental health journey, I have always lived a fulsome life (just with irregular ups and downs). Please click on this article about my “life story” from a non-mental health perspective if you want to know more.

Always follow professional advice, but you can ask questions about your treatment and voice your concerns. That is your right and, ultimately, your duty to yourself and those who love you. By the way, it is OK to unravel or be scared to reach out.

That is why I am reaching out to you, so take my hand…

You are welcome to reach out to me personally about anything in this article via humansupport@newosis.net

Bibliography:

Casarella, J. (2020). Tardive Dyskinesia. WebMD. https://www.webmd.com/mental-health/tardive-dyskinesia. Accessed 11 November 2022.

Cornett, E. M., Novitch, M., Kaye, A. D., Kata, V., & Kaye, A. M. (2017). Medication-Induced Tardive Dyskinesia: A Review and Update. The Ochsner journal, 17(2), 162–174.

Lloyd, W. (2021). The Emotional Toll of Tardive Dyskinesia. Healthgrades. https://www.healthgrades.com/right-care/schizophrenia/the-emotional-toll-of-tardive-dyskinesia. Accessed Nov 11 2022.

MacGill, M., & Tee-Melegrito, R.A. (2022). What is Psychosis? Medical News Today. Oct 20, 2022. https://www.medicalnewstoday.com/articles/248159. Accessed on Nov 11 2022.

Mathews, M., Gratz, S., Adetunji, B., George, V., Mathews, M., & Basil, B. (2005). Antipsychotic-induced movement disorders: evaluation and treatment. Psychiatry (Edgmont (Pa.: Township)), 2(3), 36–41.

Mind. (2020). Antipsychotics. Mind.org.uk. https://www.mind.org.uk/media-a/6438/antipsychotics-2020.pdf. Accessed Nov 11 2022.

National Alliance on Mental Illness (“NAMI”). (2022). Psychosis. Nami.org. https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Psychosis. Accessed Nov 11 2022.

Patel, K. R., Cherian, J., Gohil, K., & Atkinson, D. (2014). Schizophrenia: overview and treatment options. P & T: a peer-reviewed journal for formulary management, 39(9), 638–645.

Westmeria Counselling Service. (2019). Understanding the Freeze Stress Response. Westmeria School. https://westmeriacounselling.co.uk/understanding-the-freeze-stress-response/#:~:text=Commonly%20associated%20with%20a%20state,that%20we%20hold%20our%20breath. Accessed Nov 11 2022.