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It's Not In the DSM: A Story of Rare Mental Illness - The Cotard Delusion


 

Heavy Metal, Walking Corpses, and Compassion


Content Warning: this article contains frank discussion of self-harm, serious mental illness, and suicide.


Wherever there are people there will also be mental illness. Despite the ubiquity of mental illnesses, open discussion about them is taboo in most cultures (https://www.dandc.eu/en/article/almost-everywhere-world-mental-illness-taboo-subject). This taboo prevents people from understanding the reality of these debilitating conditions and the people who suffer form them. However, open discussion of mental illness has gradually increased throughout the 20th and 21st centuries. For instance, mental health researchers and public news outlets have explicitly focused on the mental health toll surrounding the COVID-19 pandemic. Research done in Canada indicates that anxiety and depression in people ages 8-28 is rising. Hospitalizations for substance use and suicide attempts have also increased dramatically in the past year. [Read more at Global News, Nature, Toronto Sun, and WSWS.]


Open discussion of mental illness is appearing in ever wider arenas of media, including podcasts and blogs. One of the benefits of these new media formats is that they allow for long-form storytelling, such as on the exceptionally funny, yet educative, podcast “Something I Don’t Know” with Colby Weeds and Jordan Buyens. (Full disclosure: Colby and I have been friends since childhood.) On a recent episode, Colby told the story of a Norwegian heavy metal band called Mayhem. Listening to this episode, I learned something I didn’t know: the lead singer of Mayhem, who went by the name “Dead” (born: Per Yngve Ohlin), may have suffered from an extremely rare mental illness. Eventually, he took his own life at the age of 22. One of his bandmates said, “He didn’t see himself as human... he had visions that his blood had frozen in his veins and that he was dead.” In short, Dead believed that he was already dead. This distorted belief is a symptom of the extremely rare and serious mental illness* called the Cotard Delusion.

The Cotard Delusion is named for the neurologist Jules Cotard, who documented the first known case in 1880. In all cases, the central symptom of the Cotard Delusion is the belief that one does not exist, that they are dead, that they are a walking corpse, or that they are a spirit that has not moved on to the afterlife. For this reason, it is sometimes called "Walking Corpse Syndrome." In some cases, these people die due to starvation, or they commit suicide. Since 1880, there have been fewer than 300 cases of the Cotard Delusion recorded. Like many other rare mental illnesses, the Cotard Delusion does not appear in the Diagnostic and Statistical Manual of Mental Disorders, or “the DSM”.


The DSM is a reference text of mental illnesses like an encyclopaedia (Note in box: Outside North America, mental health professionals use the International Classification of Diseases, or ICD). It is used by mental healthcare professionals—counsellors, psychiatrists, psychologists, psychotherapists—for several purposes. However, not all mental health professionals agree upon the use of the DSM for diagnosis. A 2019 study by Dr. Kate Allsopp and colleagues encapsulates many of the problems with DSM, which they call a “disingenuous categorical system.” Dr. Allsopp warned against the downsides of diagnostic labels (e.g. Borderline Personality Disorder, Generalized Anxiety Disorder, and so on), saying, “They are scientifically meaningless and can create stigma and prejudice.”

Despite lack of consensus about the DSM and its usage, it is generally agreed upon that understanding the person you are working with is necessary for providing adequate care. This includes understanding the nature of whatever is causing the person distress—whether this is a serious mental illness or something else. However, learning about rare mental illnesses which do not appear in the DSM is notoriously difficult. For instance, A Google Scholar search for the term “Cotard Delusion” produces 2,790 results. By comparison, there are 518,000 results for “Borderline Personality Disorder” and 1,280,000 results for “Generalized Anxiety Disorder,” both of which appear in the DSM. In short, mental illnesses which are named and catalogued are better researched and better understood. This understanding supports mental healthcare professionals in their efforts to provide care for people suffering from mental illnesses.


Increasing understanding about rare mental illnesses is not only helpful for the people suffering from these disorders, but also for their families, and for the public at large. Let me illustrate why.


You may have felt isolated during the coronavirus pandemic, a feeling shared amongst people who endured lockdowns from areas as diverse as Argentina, Canada, Ghana, and Nepal. This shared feeling of isolation may have allowed you to understand other people from distant lands whom you had never thought about before. This example shows how an understanding of another person’s struggles brings us closer to them and opens the possibility for care and compassion.


For most of us, the feeling of isolation will go away as social distancing restrictions lessen and public spaces reopen due to inoculation, whenever that may be. However, people struggling with mental illnesses continue to experience isolation due to lack of understanding.


Today, there is much more understanding about mental illnesses such as Generalized Anxiety Disorder than there was 50 years ago. This is largely due to increased research, public attention, and open discussion of mental illnesses. Because of this, people who experience generalized anxiety are much less isolated than in the past. However, there are some mental illnesses which remain widely misunderstood. Substance use disorders are a great example. We tend to look down upon people who struggle with disorders such as alcoholism or opiate use disorder. These people are often unhoused and live on the street. We call them names like “addict” and see their suffering as a personal failure, saying, “They made poor choices” or “They are hurting their family.” Because we do not understand this person, we feel apathetic and disdainful towards them, we call them by dehumanizing labels, and we are unlikely to help.


Colby’s story about Dead has inspired me to tell a story about another person who has struggled with the Cotard Delusion. Stories are an amazing medium for understanding people because they allow us to see life through their eyes. We gain a much more accurate understanding of a person and their struggles when we enter into their own frame of reference. With this kind of understanding, it is difficult to feel apathetic or disdainful. We realize that anyone, even ours loved ones or ourselves, may experience this same kind of problem some day and our compassion grows. This compassion is what calls on us to utilize our human potential and realize our responsibility to help others.

 

Warren's Story: The Soldier Who Thought He Was Dead

Warren in uniform (Source: Mirror.co.uk)

The following story is compiled from a number of interviews of Warren and Sarah McKinlay.


Warren McKinlay is an English army veteran who served seven years with the Royal Electrical and Mechanical Engineers (REME) in the early 2000s. Warren explained why he joined the REME, “When I joined the army, aged 19, my real love was always cars, motorbikes, and racing... [that] was the reason I became a mechanic.” It was not long after joining the army that Warren found another love: Sarah. Motorsports played an important part in their relationship, too, as Sarah said, “Watching racing together has always been a shared passion between us.” When they began dating, Sarah said she initially felt daunted by the realities of Warren’s life in the army. After all, they would be apart for long periods of time and their relationship was put to the test multiple times while Warren was deployed in Bosnia. [For those interested in learning more about the historical background of Warren’s deployment in Bosnia, click here go to scroll to the Afterward.]


Like all soldiers, Warren also had a life at home. Sarah and Warren married and eventually decided to begin a family. In 2005, when Warren was 23, he went on a motorcycle ride across the British countryside with a friend. It was a farewell ride to a motorcycle that Warren was about to sell on eBay. They took their bikes on the A1075, a long and winding road bordered on either side by trees—perfect for a ride. They were traveling at 100km/h when Warren’s friend lost control. Swerving to avoid a collision, Warren’s bike went off the road and he was thrown through the air. His body hit a tree and then was crushed by the hurtling motorcycle. His pelvis and spine were broken, and both his lungs were ruptured by the accident. Warren’s helmet was cracked open from the force of the crash, surely saving his life.


Sarah was three months pregnant with her first child, watching EastEnders and eating a bag of chips while she waited for Warren to return home. It was around 6:00 P.M. when one of Warren’s friends came to the door. He told her about the accident and the two of them rushed to the nearby hospital where Warren was being taken: Headley Court. When Sarah arrived, she was given little information about the extent of Warren’s injuries. However, she was allowed to hold his hand and was relieved to see him conscious. By the early morning, the medical team brought Warren into surgery to treat his physical injuries. However, “No one mentioned brain injury,” said Sarah. “The medical team was so concerned about fixing Warren’s physical injuries that [the] brain injury was entirely overlooked.” Due to the severity of damage to Warren’s lower body, he was confined to a wheelchair and kept at the rehabilitation centre for several weeks. There, Sarah was told that it was very unlikely Warren would ever be able to have children again.


Headley Court, the hospital and rehabilitation centre where Warren was being treated, is a military facility. In 2005, many of the patients were soldiers returning from Iraq and Afghanistan. Warren remembers very little from this time, but what he does remember, he described as “a living nightmare.” He said, “I truly believed that I had died in the accident... I was surrounded by stories of death by injured soldiers returning... guys that had received life-changing injuries like amputations and being blown up. I was quite mentally unstable, mentally fragile.” Overwhelmed, he sank inside himself and interacted with no one.


Six weeks later, Warren was discharged from the hospital and returned home. Sarah decided to take several months off from work to care for Warren. She said, “When Warren was finally discharged, my priorities drastically changed. All my time was spent caring for [him] rather than looking after myself in the final stages of pregnancy.” Warren’s family lived an hour away and visited when they could to help care for him. Yet it was Sarah who took on the greatest responsibility. She said, “I felt incredibly lonely... It was a struggle, but I was thankful to have him home.”


Due to the severity of his physical injuries, Warren needed to use the wheelchair at home and required follow-up visits to the rehabilitation centre. The rehabilitation staff tried to help Warren to regain his autonomy but, he said “I began to think there was no point participating in all this stuff because I died in the accident. How could they make me better if I’m not alive? I know it sounds utterly bizarre, but I genuinely believed I’d died in the crash but for some reason my spirit hadn’t moved on.” He also stopped eating. “I was convinced that I didn’t have to eat because I was dead, and I had no need for food anymore.” His body weight dropped 15kg (33lbs), which prompted the staff at Headley Court to begin giving him nutritional supplements. Warren’s physical injuries and the wasting of his body were obvious medical problems which needed attention. However, there were also symptoms of an underlying mental illness, the Cotard Delusion, which remained unseen.


Warren’s loved ones saw much more than physical problems. They noticed that his behaviours and communication had changed drastically. He barely talked to anyone in his own family, but he would talk to strangers about soccer games on the television with apparent ease. On one occasion, Sarah showed him ultrasound images of their soon-to-be child, but he showed no sign of excitement. Sarah said, “Going through pregnancy by myself was tough... it was frustrating [and] we had no idea why he was behaving like that.”

Warren said, “I do not remember a conscious moment of thinking that I am actually alive, and it is all in my head... I had gone completely into a shell. Sarah was loving and tried everything to help me, but I felt I couldn’t share what was happening to me.” And how could he share? How could anyone understand the strange symptoms of the Cotard Delusion? He described these symptoms as, “fighting a battle with your own brain and body [where it feels like] everyone is trying to trick you.” Warren was even tricked by his own memory. One day, he drove to a shop, parked, bought something, and took a taxi home. It was not until later that he realized he had left his car there.


Four months after the accident, Sarah gave birth with Warren by her side. They named their new daughter Katie. She was a ray of light in the young couple’s world who seemed to help Warren to improve for a time. Sarah said, “Warren was fantastic. He supported me and helped out... I cannot fault him at all. He was incredible.” However, this is also when Warren found that he had become extremely sensitive to noises. He said, “Every time there was a loud noise or Katie would cry, I flew into a rage. I loved her from the moment she was born, but I would have to leave the house as the noise was like a searing pain in my head.”


In 2006, Warren was medically discharged from the army. The young family lost their army quarters and had to find a new place to live. Sarah and Warren did not know what to do. The two of them tried to work together to raise their new baby, yet Warren was limited by his sensory problems. Sarah said, “The army and the national health service both seemed to have forgotten us... One day, I just sat in my car and cried. I felt completely alone for a long time.” Due to Warren’s physical injuries, he also could not work. It was on a regular visit to the rehabilitation centre for these injuries, about one year after the motorcycle accident, that a specialist assessed Warren for a traumatic brain injury (TBI)*. The results came back: Warren had sustained damage to the frontal lobe of his brain.

 

What is a Traumatic Brain Injury?


A traumatic brain injury (also called a “TBI”) is an injury to the tissue of the brain inside the skull which may result from contact injuries (getting hit in the head) or sudden acceleration or deceleration (such as Warren’s injury). The initial injury also results in changes in blood flow within the brain; this increased or decreased blood flow may result in further damage to brain tissue. Concussions are mild TBIs. Severe TBIs often require immediate medical attention to prevent permanent brain damage and death.

Traumatic brain injury to the frontal lobe. Source: Schweitzer, Niogi, Whitlow, & Tsiouris, 2019

The frontal lobe is one of nature’s most impressive creations. It is the largest part of the neocortex, the outer part of the brain, which is most developed in the higher mammals, including humans. Different regions of the frontal lobe control intentional actions, senses such as touch and hearing, speech, and the expression of emotions. The prefrontal cortex, behind the forehead and eyes, is highly involved with a set of mental abilities called executive functions. These abilities include attention, decision-making, judgment, mental flexibility, and self-control, among others. Damage to the frontal lobe, and especially the prefrontal cortex, has been shown to have a number of different, serious affects on movement, sensation, executive functioning, and may even result in substantial personality change*. Strange and rare mental illnesses can also result from damage to the frontal lobe—in Warren’s case, it appears that his brain injury may have resulted in the Cotard Delusion.

 

Back to Warren's story...


The diagnosis of TBI came as a shock to Sarah. She said, “I told the specialist: ‘No, I’ve been living with him for a year and he’s fine—just adjusting to civilian life after the army...’ But [then] the puzzle pieces started to come together when we considered the symptoms... the anger, the struggle to emotionally connect, the struggle with noises, the memory loss. Everything seemed to click, and it just made sense.” A social worker also approached Sarah privately after the diagnosis. They told Sarah that there are a statistically high number of marriages that fall apart after TBIs. Sarah was undeterred, “I remember feeling determined to ensure that we would work through it and not become a divorce statistic. Katie needed her daddy, and I needed my husband. He did not ask for this to happen to him.”


The specialist also gave Warren a name for the peculiar and persistent belief that he was already dead: the Cotard Delusion. After a year of the delusion affecting his life so profoundly, he could finally begin to understand what he was going through. In a stroke of incredible luck, Warren met another soldier who suffered from the Cotard Delusion at the rehabilitation clinic. Warren said, “[It was] a billion to one odds as there’s been so few people diagnosed through the years.” Warren’s new friend taught him a creative way to cope with the Cotard Delusion. “He concluded that he was such a different person that the old him was dead, so he started again with a new identity. I never thought about doing that but talking through it and seeing how he came to terms with it helped me with what I had gone through. With the help of the therapists, I was able to move on and live again... I accepted that the old Warren was dead, he was gone.”


Although Warren had found some relief through shared experience, he said, “I [still] couldn’t process the fact that I had a brain injury... [and] from that point everything got a lot worse for me. When I was first trying to come to terms with my brain injury, my emotions were like a light switch—I would go from happy to angry to depressed. It was tiring and I got frustrated. It is like you have a black hole that you are heading for and the harder you try to run away from it, the harder it pulls you in. You become angry with yourself and start giving yourself a hard time.” Feeling understandably overwhelmed, he turned to alcohol to cope. He said, “A growing dependency on alcohol became [a] serious life obstacle.”


Everyone in Warren’s family was affected by his TBI. Sarah said, “Managing anger became a big problem for Warren. Things in the house would get broken [and] he turned to drinking. All he wanted to do was go out and drink in the pub with friends... I found it difficult to get through to him and his brain injury meant that he struggled to engage and connect with Katie. She saw her daddy’s anger outbursts and little things such as not saying goodbye when he went out... [these] were difficult for a toddler to understand. I tried to protect Katie as much as possible from seeing Warren’s behaviour.”


Like many people with a TBI, it was difficult for Warren to accept that he had one and that he needed support. Sarah said, “The biggest challenge was getting [him] to accept that he needed more support.” It was three years after Warren’s diagnosis of TBI that he and Sarah went to a support group session at Headway, a charity which helps people who have suffered from brain injuries. Sarah said, “He really benefitted from the social outings as the team helped to build up his confidence in a sober environment with people who understood his life challenges.” One of the most powerful therapeutic experiences in these sessions was learning that there were other people who have had or are going through similar problems and struggles—in other words, Warren learned that there are others who understand him. This experience is what group therapists call “universality.”


Warren said getting out of the house and being with others who understood him was a key part of his recovery. Still, there were challenges. “My issue was that I would go for so long and then feel so much better that I thought I no longer needed support. I would stop going and spiral downhill again... For a while, I let the hidden effects of brain injury overwhelm and control me. No matter what I tried, my brain just would not play ball.” The road to recovery would also be long and winding.


Perhaps it is no surprise that a major part of Warren’s recovery was the passion which had led him down this road in the first place: motorsports. Warren said “I use racing as a goal-oriented rehabilitation tool, and it boosts my motivation to keep getting better. In the early days of recovery, I struggled to concentrate for long periods of time. Racing gives my mind a focus. Imagine you are in a crowded room, and everyone is talking at the top of their voices. The moment I put on my racing helmet the shouting stops. As soon as I climb into the seat and that visor goes down, everything is quiet and calm.”


In 2012, Sarah and Warren received a happy surprise. “When I fell pregnant [again], we were so happy,” said Sarah. They named their new son Frazer and Warren was offered a second chance at being a father to an infant. “Warren has had a chance to experience all the things that he missed out on with Katie [and he] now has a strong, loving relationship with both Katie and Frazer.”

Warren with Frazer and Katie. Source: Headway.org.uk

It was in 2016, more than ten years after the motorcycle accident, that Warren was invited to join Team BRIT, an endurance car racing team made up of military veterans living with various disabilities. He said, “I have re-discovered my competitive drive and determination—something I thought I had lost forever after [my] brain injury. It is hard to explain what motorsports has done for me. It has literally given me my life and spark back.”


“Joining Team BRIT has been the best thing for Warren,” said Sarah. “When he left the army, he deeply missed the banter and camaraderie. Racing has given him back a real sense of purpose and he is so much happier and more determined... He is doing so well, and I am so incredibly proud of him.” Sarah is not the only one in the family who feels proud of Warren’s recovery. “Katie also often says how proud she is of her daddy. She saw him at his lowest, his angriest, and she has seen [his] transformation over time into a smiling person once again.”


Although Warren continues to struggle with difficulties due to his TBI, he is once again filled with life. Now, he wants to help others. “It is very hard for people with disabilities to live their everyday lives,” he said. “I want people living with a hidden disability to know that sport is not just for top athletes. It can be an emotional outlet and key driving force in your life and recovery. You do not have to be winning gold medals at the Olympics to feel a real benefit from these kinds of activities... Whether you gain pleasure from swimming, biking, or the climbing wall, there are so many sports out there for all ages and abilities that accommodate disabilities... [it] could be your new passion after brain injury.” Sarah added, “Warren [also] takes his motorcycle helmet into schools and delivers talks to the students about the importance of looking after your head. He uses himself and the broken helmet as living proof [that] wearing a helmet can literally save your life.”


Warren’s TBI and experiences in the hospital seem to have triggered the Cotard Delusion. He survived the motorcycle accident yet believed himself to be dead; this belief had profound affects on his body, mind, and relationships. Although it would be reasonable to say the Cotard Delusion was a symptom of the brain injury, for Warren, it was serious enough to be life-threatening. It is remarkable that a man who once believed himself to be a dead spirit not moving on to the afterlife ended a 2016 interview by saying, “No matter how bad things are, there’s always a reason to live.”


Warren and his family endured years of difficulties while coping with the many symptoms of his TBI, like distorted reality (the Cotard Delusion), memory disruption, loss of motivation, mood swings, sensory sensitivity, social withdrawal, and substance use. So, what was Warren’s reason to live? Warren’s story offers a clue: “It takes a special kind of person to live with someone who has sustained a serious TBI, and Sarah has been incredible. Like anyone in her position, she has had moments of feeling the strain, but she has always stood by me and helped me rediscover my passion for racing... she encouraged me and tolerated me in my worst. times. I honestly believe I wouldn’t be alive today if it wasn’t for my wife.”

Sarah and Warren McKinlay. Source: Headway.org.uk
 

Warren’s story illustrates how mental illness affects many areas of a person’s life, including their behaviours, beliefs, emotions, memory, thoughts, and even their relationships with others. Like most serious mental illnesses, Warren’s experience of the Cotard Delusion and his TBI also affected other people in his family. Sarah, who was always closest to Warren, experienced great distress. Sarah showed incredible care and compassion for Warren, yet there were many times when she could not understand him. There was a critical moment in Warren’s story when a specialist who understood what Warren was going through named the problems he was experiencing. The diagnoses of the Cotard Delusion and TBI were the spark of understanding which allowed Sarah to see through her husband’s eyes. Furthermore, this same spark is what pulled Warren out of isolation and allowed him to connect with others. When Warren made a new friend at the hospital who also suffered from the Cotard Delusion, he met someone who understood exactly what he was going through. This friend also helped Warren to understand himself and overcome the debilitating effects of the Cotard Delusion. Later, Warren connected with the people at Headstart, who could also understand him at a deep level due to their shared experience of TBI.


Understanding is necessary for the healing of mental illness. The specialist’s actions of naming and describing the Cotard Delusion and TBI allowed others to understand what Warren was going through. This understanding empowered the mental healthcare professionals working with Warren to provide better care. Furthermore, Sarah and others were better able to understand Warren’s struggles from within his own frame of reference. Understanding was the catalyst which reconnected Warren to Sarah, his family, and to the world and these relationships were the healing factor which brought him back to himself. He rediscovered who he was inside, re-engaged with his passions, and has dedicated himself to empowering and helping others.

 

Afterward: What Happened in Bosnia?


The Balkan Peninsula in south-eastern Europe is an ethnically diverse region with centuries of inter-group fighting and violence. Perhaps the most famous incident was the assassination of Franz Ferdinand in Sarajevo (now the capital of Bosnia and Herzegovina), which sparked the beginning of World War I. World War I and II transformed the political geography of the Balkans many times, eventually resulting in the creation of the Federal People’s Republic of Yugoslavia after World War II, an authoritarian communist government modeled after the Soviet Union. When the Soviet Union dissolved in December 1991, nearly a century of repressed ethnic hate was released. This environment also created the perfect stage for several of the 20th century’s most notorious war criminals, including Slobodan Milošević and Ratko Mladić.


The Bosnian War began in April 1992 and peace agreements were not settled until December 1995. The war darkened the Balkan soil with the blood of “indiscriminate shelling, ethnic cleansing, and systematic mass rape.” More than 100,000 people died, including 38,000+ civilians. Peacekeeping operations headed by North Atlantic Treaty Organization (NATO) began immediately in 1995 and continued until the mid-2000s. Peacekeepers, including members of the British army, were sent to Bosnia to “deter hostility and contribute to a secure environment by providing continuing military presence.” The people they met there were the survivors of a genocide—traumatized families living in ruined infrastructure. Warren’s deployments to Bosnia would have coincided with these peacekeeping efforts and, as an electrical engineer, it is likely he was tasked with efforts to rebuild.

 

References


https://en.wikipedia.org/wiki/Cotard_delusion


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https://globalnews.ca/news/8012019/ontario-youth-children-depression-mental-health-covid-pandemic/


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https://www.headway.org.uk


https://www.headway.org.uk/about-brain-injury/individuals/brain-injury-and-me/warren-mckinlay/


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https://www.wsws.org/en/articles/2021/07/21/suic-j21.html


Kaufmann, C. N., Susukida, R., & Depp, C. A. (2017). Sleep apnea, psychopathology, and mental health care. Sleep health, 3(4), 244–249. https://doi.org/10.1016/j.sleh.2017.04.003 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5560422/


Werner, C., & Engelhard, K. (2007). Pathophysiology of traumatic brain injury. BJA: British Journal of Anaesthesia, 99(1), 4-9. https://academic.oup.com/bja/article/99/1/4/269306

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