Neglected, misunderstood and misdiagnosed disorders

Rachel talks about her experience with depersonalisation and explores other misunderstood disorders.

As more awareness around mental health is surfacing, mental health disorders are becoming increasingly better understood and less stigmatised. However, there are still some disorders which are neglected and misunderstood in society as well as the medical and academic community. Such misconceptions can have serious consequences if conditions go undiagnosed and untreated, or misdiagnosed as a different disorder.

By sharing our experiences and bringing awareness to these disorders, we can gain a better understanding of the symptoms and support those who may feel alone.

Everyone’s experience of mental health is different and it can be really hard to find a diagnosis and treatment which is right for you. To assist this process, you may wish to stay informed and share your thoughts with your family, friends and healthcare professionals. This can help them understand more about your experiences and what your diagnosis really means. It will also enable you to have a say in your treatment, make your voice heard, and take steps to amend your treatment if you are not happy with your care.

Rachel's EXPERIENCE

My name is Rachel and I am a recent university Psychology graduate. University was an incredible transformative time for me. I had a lot of fun and met amazing people but I also struggled at times. I was navigating my way through new environments, new social and academic pressures, while also attending therapy working to overcome personal challenges. 

In my second year at university, I was feeling completely overwhelmed with my academic work and during the exam period I was not looking after myself well. I was constantly stressed, not sleeping properly and putting an immense amount of pressure on myself. One evening I remember feeling completely dissociated from my sense of self, my body and the world around me. I didn’t feel real, more like an automated version of myself and I was terrified by this experience. 

I did not realise it then but what I had experienced was so-called ‘transient’ or ‘normal depersonalisation’ – feelings of unreality and detachment from the self and/or your surroundings. I discovered this when I was coincidentally allocated Depersonalisation as the topic for my final year dissertation. During my research I learnt that transient episodes of depersonalisation are actually very common in the general population, often triggered during periods of stress, trauma or anxiety. While this was comforting to know, I also questioned why I had never heard about it before especially as a psychology student. This got me interested in looking into other symptoms and disorders which are often neglected, misunderstood and consequently untreated. 

One evening I remember feeling completely dissociated from my sense of self, my body and the world around me. I didn’t feel real, more like an automated version of myself and I was terrified by this experience. 

DEPERSONALISATION DISORDER

Depersonalisation refers to a state whereby individuals experience detachment from their sense of self and/or their surroundings (derealisation). 

Common symptoms include:

  • Emotional numbing – diminished ability to feel emotions or ability to enjoy things
  • Changes in bodily experiences and sensations
  • Changes in the perception of surroundings and feeling cut-off from the world

Individuals experiencing prolonged and persistent episodes may be diagnosed with Depersonalisation-Derealisation Disorder (DDD), which falls under the category of Dissociative Disorders. However, receiving this diagnosis may be difficult as most doctors do not fully understand the disorder and believe it is extremely rare. Additionally, DDD often goes misdiagnosed due to the overlapping symptoms with other disorders, particularly depression and anxiety. DDD may also get confused with psychosis (e.g. schizophrenia), yet a crucial distinction is that individuals with DDD are aware that the change they’re experiencing is subjective, rather than believing the world itself has changed.  

Getting an incorrect diagnosis can be extremely frustrating and lead to further suffering for the individual. If anyone identifies with the symptoms of DDD, it may be helpful to find out more information and discuss this diagnosis with healthcare professionals who may know about the disorder.

OBSESSIVE COMPULSIVE DISORDER

There are lots of misconceptions about OCD. Some people may think that individuals with OCD just like things to be tidy and might even describe themselves as being ‘a bit OCD’. However, OCD is a serious mental health condition that causes disruptions to day-to-day activities and quality of life. 

Obsessive-compulsive disorder (OCD) has two main parts which are often misunderstood. Obsessions are unwelcome thoughts, urges or worries that repeatedly appear in your mind. On the other hand, compulsions are repetitive activities that you do to reduce the anxiety caused by the obsession. For example, repeatedly checking a door is locked or repeating a specific phrase in your head. 

There are other mental health disorders that are similar to OCD because they involve repetitive thoughts, behaviours or urges, which makes it hard to get the right diagnosis and treatment.

Some of these similar disorders include:

  • Body dysmorphic disorder (BDD) – obsessive worrying about one or more perceived flaws in your physical appearance and developing compulsive routines to deal with worries.
  • Trichotillomania – compulsive urge to pull out your hair. 
  • Hoarding 
  • Obsessive-compulsive personality disorder (OCPD) is a type of personality disorder which crosses-over with OCD traits but is a separate condition. 

borderline personality disorder

Borderline Personality Disorder (BPD) is a type of personality disorder. People with BPD often have difficulties with how they think and feel about themselves and other people.

Individuals may be diagnosed with BPD if they experience at least 5 of the following things for a prolonged period of time and which impact daily life:  

  • Extreme reactions to feeling abandoned.
  • Unstable relationships with others.
  • Confused feelings about who they are.
  • Being impulsive in ways that could be damaging. For example, spending, sex, substance abuse, reckless driving, and binge eating
  • Regular self-harming, suicidal threats or behaviour.
  • Long lasting feelings of emptiness.
  • Intense, highly changeable moods.
  • Paranoid thoughts when stressed.

The diagnosis for BPD is controversial because one only needs to experience 5 of the symptoms to be given the diagnosis, meaning lots of people with very different experiences may be included. Furthermore, BPD is not wholly understood in the medical and psychological community so misdiagnosis is common. Some include:

  • Bipolar disorder (see below)
  • Psychosis
  • Depression
  • Antisocial Personality Disorder 
  • Post Traumatic Stress Disorder (PTSD)

If someone is worried that their diagnosis doesn’t fit the way they feel, it is important that they discuss this with their healthcare professional to ensure they get the right support and treatment.

Bipolar disorder

Bipolar Disorder is a type of mood disorder, where individual experience two types of episodes:

  • Depression – feeling very low and lethargic
  • Mania – feeling very high and overactive

Getting diagnosed with Bipolar Disorder can be challenging as most individuals experience the first episode of mood disturbance as depression rather than mania. Consequently, individuals may seek treatment only for depressive symptoms leading to an incorrect diagnosis of unipolar depression. This carries the risk of delayed or inappropriate treatment, which can result in manic episodes and trigger rapid cycling. Furthermore, individuals with Bipolar Disorder often experience comorbidity with other diagnoses, which poses an additional barrier to receiving the correct treatment. These include:

  • Panic Disorder
  • Alcohol and drug abuse 
  • Obsessive Compulsive Disorder (OCD)
  • Attention Deficit Hyperactivity Disorder (ADHD)

learn more about these disorders

Read about another person’s experience with depersonalisation on Mind.

Read about dissociative disorders on the NHS website.

Read about Obsessive Compulsive Disorder on Mind, the NHS website, and on OCD UK.

Read more about Borderline Personality Disorder on Mind, the NHS website, and Mental Health UK

Read more about Bipolar Disorder on Mind, the NHS website, Rethink Mental Illness and Bipolar UK.

See our other resources