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Neglected, misunderstood and misdiagnosed 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.

Rachel's experience

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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. 

In this resource I will discuss some of the most frequently neglected and misdiagnosed mental health disorders and resources for more information, advice and how to access support. 

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.

Depersonalisation-Derealisation Disorder (DDD)

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 not know much about the disorder. 
 

Obsessive-compulsive disorder  (OCD)

There are lots of misconceptions about Obsessive-Compulsive Disoder (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. 

 

OCD has two main parts which are often misunderstood; obsessions and compulsions. 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 that crosses-over with OCD traits but is a separate condition. 

Borderline 

Personality Disorder (BPD)

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)

Conclusions

Everyone’s experience of mental health is different, and it can be tough 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.

useful resources

  • Anxiety
    Anxiety UK (www.anxietyuk.org.uk) Charity providing support if you have been diagnosed with an anxiety condition. Phone: 03444 775 774 (Monday to Friday, 9.30am to 10pm; Saturday to Sunday, 10am to 8pm)
  • Depression
    Mental Health Foundation (https://www.mentalhealth.org.uk) Provides information and support for anyone with mental health problems or learning disabilities. Mind (https://www.mind.org.uk/) Promotes the views and needs of people with mental health problems. Phone: 0300 123 3393 (Monday to Friday, 9am to 6pm) Rethink Mental Illness (https://www.rethink.org/) Support and advice for people living with mental illness. Phone: 0300 5000 927 (Monday to Friday, 9.30am to 4pm) Samaritans (http://www.samaritans.org.uk/) Confidential support for people experiencing feelings of distress or despair. Phone: 116 123 (free 24-hour helpline) SANE (http://www.sane.org.uk/) Emotional support, information and guidance for people affected by mental illness, their families and carers. SANEline: 0300 304 7000 (daily, 4.30pm to 10.30pm) YoungMinds Information on child and adolescent mental health. Services for parents and professionals. Phone: Parents’ helpline 0808 802 5544 (Monday to Friday, 9.30am to 4pm)
  • Bipolar
    Bipolar UK (https://www.bipolaruk.org/) A charity helping people living with manic depression or bipolar disorder.
  • Drug and Alcohol
    Frank (https://www.talktofrank.com/) Web-based information as well as an email service and helpline. Website contains A-Z of drugs and advice on what to do if you are worried about a friend. Helpline 0300 123 6600, 2pm to 6pm
  • Eating Disorders
    BEAT (https://www.beateatingdisorders.org.uk/) The National charity for eating disorders, 08088010711 (for under 18s), 08088010677 (for adults). Helplines are open 365 days a year from 12pm–8pm during the week, and 4pm–8pm on weekends and bank holidays. Beat also offers a one-to-one web chat and online support groups.
  • For Men
    CALM (https://www.thecalmzone.net/) CALM (Campaign Against Living Miserably) is a health promotion charity with the aim of reducing male suicide in the UK. Website contains helpful information and ways to get involved. 0800 58 58 58 (5pm to midnight, 7 days a week) Men’s Health Forum (https://www.menshealthforum.org.uk/) 24/7 stress support for men by text, chat and email. HUMEN (https://www.wearehumen.org/) HUMEN provides space for men to talk, listen and connect online every Monday at 18:30. StrongMen (https://www.strongmen.org.uk/) StrongMen is a charity aiming to tackle emotional and mental health issues brought about by the suffering from bereavement. UK Men’s Sheds Association (https://menssheds.org.uk/) UK Men’s Sheds Association is an organisation that offers community spaces for men to connect, converse and create. The activities are often similar to those of garden sheds, but for groups of men to enjoy together. They help reduce loneliness and isolation, but most importantly, they’re fun.
  • People of Colour
    The Mental Health Foundation (https://www.mentalhealth.org.uk/a-to-z/b/black-asian-and-minority-ethnic-bame-communities) The Mental Health Foundation has some highly beneficial information on their website regarding BAME Mental Health and the barriers which exist for people of colour in relation to accessing therapy. Black, African and Asian therapy network (https://www.baatn.org.uk/) This network is the home of the largest community of Counsellors and Psychotherapists of Black, African, Asian and Caribbean Heritage in the UK. If you can afford therapy (which can be relatively cheap as some therapists offer a sliding scale where you can get therapy as low as £10 a session!) Black Minds Matter (https://www.blackmindsmatteruk.com/) Connecting Black individuals and families with free mental health services — by professional Black therapists to support their mental health.
  • LGBTQ+
    switchboard.lgbt (https://switchboard.lgbt/) The LGBT+ switchboard helpline provides listening services, information and support for lesbian, gay, bisexual and transgender communities. 0300 330 0630 (10am–10pm every day) email: chris@switchboard.lgbt Allsorts (https://www.allsortsyouth.org.uk/) Allsorts is charity which supports young people under 26 who are lesbian, gay, bisexual, trans or unsure (LGBTQU) of their sexual orientation and/or gender identity 01273 721211. Free helpline, 10am-5pm, Monday – Friday LifeSIGNS (https://www.lifesigns.org.uk/) Self-Injury Guidance & Network Support. Ideas and guidance for anyone affected by self-injury. Small charity run by LGB people with personal experience of self-injury. Anonymous Support Forum, clear fact-sheets, and active across social networks e.g. @LifeSIGNS LGBT Foundation (http://lgbt.foundation/) Helpline run by Lesbian and gay health charity. Email: info@lgbt.foundation 0845 3 30 30 30 or 0161 235 8035 (10am-10pm, daily)
  • OCD and Panic Disorders
    No Panic (http://www.nopanic.org.uk/) No Panic helps people who experience Panic Attacks, Phobias, Obsessive Compulsive Disorders and other related anxiety disorders including those people who are trying to give up Tranquillizers. Helpline 0844 967 4848, 7 days 10am to 10pm
  • Suicide Prevention
    Papyrus (https://www.papyrus-uk.org/) A site focused on preventing young suicide with dedicated sections on resources for young people and their friends. Hopeline UK 0800 0684141 Monday to Friday, 10am to 10pm Prevent suicide (https://www.prevent-suicide.org.uk/) Grassroots preventing suicide has an app with help and resources for people who feel suicidal or are supporting someone else.
  • University Students
    Nightline association (https://www.nightline.ac.uk/want-to-talk/) A confidential listening, support and practical information service for University students. You can talk to them about anything – big or small – in complete confidence without judgement. Call (+44)207 631 01016pm to 8am BST every night of term Student Minds (https://www.studentminds.org.uk/) The student minds website has a wealth of information and resources about being a student and managing your mental health as well as information if you are concerned about a friend.
  • General
    Rethink (https://www.rethink.org/) Rethink Mental Illness helps millions of people affected by mental illness by challenging attitudes, changing lives. The website contains A-Z factsheets on conditions, treatments, living with mental illness also information for carers. Advice line 0300 5000 927 Monday to Friday, 9.30am to 4pm Samaritans (https://www.samaritans.org/) Samaritans provide a helpline for people wanting assistance to talk about issues related to their wellbeing or any other problem troubling them. They offer phone, email and text support. Helpline 08457 909090, 24hrs, 7 days a week Sane (http://www.sane.org.uk/) Helpline offering practical information and emotional support in a crisis. 0300 304 7000 (4.30pm–10.30pm every day). Befrienders (https://www.befrienders.org/) Befrienders worldwide is a worldwide directory of emotional support helplines. Call helpline (https://www.callhelpline.org.uk/) Provides listening services, information and support for people experiencing a mental health problem in Wales. Also provides a text messaging service. 0800 123 737 Helplines (https://helplines.org/) Is a directory of helplines available in the UK which you can search to find support suited to you. Hub of hope (https://hubofhope.co.uk/) The Hub of Hope is a database bringing grassroots and national mental health services together in one place. You are able to search for services using your postcode. Mind (https://www.mind.org.uk/) Mind is a mental health charity offering both frontline services and online information. A-Z information about mental health and information and support can be found on their website. Info line 0300 123 3393 Legal Advice line 0300 466 6463 Royal College of Psychiatrists (https://www.rcpsych.ac.uk/) Information for young people, parents and carers about young people’s mental health. This website provides user-friendly and evidence-based information on mental health problems, treatments and other topics, written by psychiatrists with help from patients and carers. The Mix (https://www.themix.org.uk/) Everything from homelessness to finding a job, from money to mental health. We’re here. The Mix is a charity that provides free, confidential support for young people under 25. Support. Advice. Information. 0808 808 4994 (Sunday–Friday 2pm–11pm) NICE (https://www.nice.org.uk/) Produces clinical guidelines on recommended treatments for different conditions, including guidance about joint crisis plans.
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