My Story. Chapter One: 20+ years of misdiagnosis and incorrect treatment

I have a story I want to share. It is My Story. My goal is to provide comfort, hope and inspiration to others who may connect with any of what I have written. As I have a lot to share I have split My Story into three separate posts.

1) My Story. Chapter One: 20+ years of misdiagnosis and incorrect treatment

2) My Story. Chapter Two: A life changing diagnosis @ age 40

3) My Story. Chapter Three: Hope and Inspiration

The obvious place to start my new blog is to share my own experience of mental illness, the time span of which is my entire adult life (which at the current age of 40 is in excess of 20 years), as well as all of my late teens. I also suspect that I would have suffered to some extent in my more formative years, undiagnosed.

I have thought long and hard about the length of Chapter One. Whilst I know it’s long, I do believe everything written is important and relevant. If you connect or identify with even a single part of it, I’ll be delighted. I then hope you might choose to follow me on my blogging journey, witnessing hope and fulfilment in the face of adversity.

A significant portion of the detail below was obtained in a letter I requested late in 2017 from the mental health service who had dealt with me on and off from a young age up to the age of 39, at which point I relocated. The letter was addressed to the mental health service in my new home town, asking them to take on care of me and providing them with a comprehensive history. It came as a huge surprise to me that this three page letter would prove to be almost worthless in the hands of the new service.

Another thing I find remarkable is that when I received this letter in 2017, it was the first time that I had ever received anything in writing describing what my diagnosis was at various stages of my life. This in stark contrast to the physical health conditions I have experienced, for which I have a file full of letters containing diagnosis and treatment plans, without me ever having to request them. Based on my experience, such transparency just doesn’t seem to exist in the world of mental health, and I can’t understand why. Maybe in different parts of the world it’s different? On many occasions over the past twenty years, I have been in utter despair at the lack of a clear diagnosis. The most common explanation I got from the psychiatrists I saw was that I had a combination of depression (severe, chronic, recurring, treatment resistant…) and anxiety. But no one seemed able to explain why I kept experiencing the two together with apparently equal weighting.  Depression slows down the mind and the body, anxiety does the opposite. How can the two exist hand in hand? This made it extremely difficult for those around me to understand what was wrong with me – family, friends, employers, colleagues etc. When the professionals didn’t seem able to explain it, how could any normal person be expected to understand it? This weighed very heavily on me over the years and was utterly exasperating.

My history

By detailing my history, I am aiming to set the context for future posts. I promise that my story will eventually turn into one of positivity.

  • Summary: I decided to put the summary given to me by the mental health service in November 2017 at the start, to set the scene. “He has a long history of recurrent depressive disorder. He has required long term maintenance therapy with a combination of mood stabiliser (take note of the relevance of this for my next post!) and antidepressant. It is likely he will be vulnerable to relapse at times of stress and transition (helpfully, by the time I saw this for the first time, we had just made a massive one!)”.
  • June 1994 (age 16): My introduction to the local mental health service (National Health Service). Little did I know back then how long the relationship would last, nor how frequent our dealings would be at times. My diagnosis was a severe depressive episode with psychotic symptoms. It is worth highlighting that I was initially prescribed antidepressant medication aged 16 by my family GP without my parents being aware of it – this happened shortly before my referral to the Young People’s Department of the local mental health service. My memory is very patchy, but I remember being at home with my sister, me cleaning stains in the house in an obsessive, compulsive manner and washing my hands with boiling hot water, then seeing the GP who started me on the tablets and shortly afterwards experiencing horrible side effects. I continued to be troubled with symptoms of depression and anxiety on and off over the next few years.
  • September 1999 (age 21): My case with the Young People’s Department was closed.
  • March 2004 (age 26): No longer a youngster, I was referred to the Adult Mental Health Service, troubled with depression, anxiety, obsessional preoccupations, social phobia and low self-esteem. By this point I had qualified as a Chartered Accountant.
  • May 2005 (age 27): This month signified a really dark spell in my life, one which I will most definitely never forget. Following a significant deterioration in my condition, I was admitted to hospital between 3rd and 23rd May 2005. I was admitted because I was having active suicidal thoughts, because of which I was placed under constant observation for the first three days of my stay. At the time I described myself as being tortured by my thoughts. My discharge diagnosis was major depressive illness without psychotic features.
  • The whole experience of being in hospital was utterly soul destroying. To this day I can’t drive past the hospital (the ward I stayed in is visible from the main road) without vivid flash backs. Whilst I have never experienced being in prison, I often wonder if it could be any worse than a stay in a mental health hospital. Whilst the environment serves a purpose in keeping people safe when in crisis, I struggle to think of a place less conducive to recovery. That’s my experience anyway.
  • Thankfully following a lot of persuading and convincing my parents got the doctors to agree to release me on the promise that they would care for me. I can not fathom the thought of having to stay a minute longer than I did in that hellish place. Meal times in the hospital were awful, sitting at a table with other very unwell people, no one talking. As was the daily ritual of queuing to take medication. Completely undignified.
  • On discharge I began attendance at a day hospital. My condition deteriorated and I continued to be troubled by depressive symptoms.
  • September 2005 (age 27): As a result of my deterioration post discharge, I started receiving a course of Electroconvulsive Therapy (ECT), receiving a total of eight treatments. I responded well to this and I think it was a real turning point in my recovery from the major depressive episode I had just experienced.
  • ECT is a procedure, done under general anesthesia, in which small electric currents are passed through the brain, intentionally triggering a brief seizure. ECT seems to cause changes in brain chemistry that can quickly reverse symptoms of certain mental illnesses.
  • April 2007 (age 29) – brighter days and a fresh start in a big new city: My case was closed by my local mental health service following maintained progress and because I had decided to make the move to a much bigger city (London) for a fresh start and to take up a new job. When I moved to London I felt like a different person with a new lease of life. I thrived on the anonymity of being in a huge city where I knew nobody and the people I did get to know knew nothing of my difficult past. I felt like people treated me at face value, in contrast to my home city where I routinely felt like I was being judged because of my history of mental illness. I had a new found confidence and shortly after moving met my now wife. For the vast majority of the near three years I spent in London, life felt great and I truly believed that the dark days of ECT, hospitalisation etc were behind me forever. Sadly, I was to be proved wrong.
  • Shortly after getting married, my wife and I left London and returned to my home city because we considered it a better and more affordable place to start a family when the time was right. We had our first child in February of 2011.
  • April 2014 (age 36): Referred back to Adult Mental Health Services complaining of anxiety and stress at work.
  • December 2015 (age 37): By this point my wife and I now had two beautiful children. I contacted the mental health team as a result of a worsening of anxiety symptoms. Shortly after, in March 2016, I was made redundant from my job. I found a new one quickly but left it after only a couple of weeks as I was unable to cope due to my worsening anxiety levels.  This marked the start of a serious downward spiral which would result in many extremely challenging times over the next two and a bit years. This included being out of work for a full year. I felt in such despair and I remember bursting into tears in my kitchen one afternoon and in a conversation with my Dad telling him how I wished there was an option of euthanasia for those suffering from serious mental illness – I saw it as an end to all the suffering but with the consent and even blessing of family members. I think I saw it as a more palatable option to suicide. I guess that shows how unwell my mind was at the time. In the early days of not working I wasn’t able to do a great deal, but as I slowly started to feel better my wife returned to full time work in retail (obviously we needed an income, albeit significantly lower than the one we had when I was working) and I took on the role as chief childcarer. I quickly learnt that this role was every bit as challenging and tiring as being in the workplace.
  • March 2017 (age 39) – Another fresh start: With the passage of time thankfully I felt able to return to work. Given my positive experiences previously and my desire to experience anonymity again, in all my wisdom I decided that the only place I wanted to and felt able to work in was London. I had a good relationship with a recruitment agency there from the last time, so I felt confident I could pick something up. However, with circumstances rather different than they were when I made this move ten years earlier, this would also entail relocating as a family with my wife and our two young children, ages 6 and 3. No doubt many saw this as madness given all we had just been through. But my wife and I were certain we wanted to give it a go as a way of getting our family life back on a positive trajectory.
  • December 2017 (age 39): Just a few months earlier all seemed to be going well, the new job in London and the family relocation successfully behind us. Three months after moving, I accepted a promoted post, albeit with trepidation. How I wish I had listened to my gut and what it was screaming out to me before I took on this more demanding job! Quite early on I knew I was out of my depth, but persevered with the support of my boss, who I was completely open with. In December things really started to unravel and shortly thereafter I resigned in favour of a less challenging role elsewhere.
  • April 2018 (age 40): By April I was very unwell and had to leave my relatively new job. I was again experiencing an intolerable combination of anxiety and severe depression. Whilst they were not active, I was definitely having thoughts again that suicide may be the only means of finally ending this recurring suffering. I clearly remember walking though a park one day, tears in my eyes and feeling completely lost and hopeless. For a moment, I understood 100% why many people reach a point where they tragically decide that for them there is no alternative. Blessed with a loving and supportive wife and two wonderful sons, I was able to cling on to the thought of them to keep me hanging on.
  • Prior to things reaching this point, I tried really hard to seek intervention from my new local mental health team. I thought the comprehensive letter from the team in my old city (as mentioned above) would ensure that I would be seen promptly when necessary given my history. Not so. I was treated as someone who had contacted the service for the first time and with no previous history, joining the back of the queue. Eventually after pleading for help, I was assessed by a Community Psychiatric Nurse (CPN) working in the Urgent Care Team. I obviously wasn’t considered a priority, with them referring me to a team called the Specialist Therapies Team. The waiting list was undefined, but I heard from a reliable source that it could be up to two years, yes two years. I phoned frequently in the hope that they might see me but to no avail.
  • Things continued to get worse as the weeks passed. I was suffering from intolerable insomnia, often lying wide awake with my mind racing for the entire night. I was taking prescribed sleeping tablets, but most of the time they were of no help whatsoever. My anxiety and frustration at not sleeping became so unbearable that alarmingly, I regularly began to leave the house in the middle of the night and go either walking or cycling in the pitch dark, doped on sleeping pills. I simply had to get out of the house, with no regard for my personal safety. I even ended up in the local McDonalds one night wearing a jumper and my pyjama trousers. At the time it didn’t even register.
  • Things really came to a head one night when my wife woke up at 3am to find me in a very severe state of anxiety. She was so concerned about me that she got the kids in the car and drove me to the local emergency department. For my kids this must have been a very scary experience, being plucked from their slumber and witnessing their Dad like this. I hope never to make them experience this again. What followed that night really shocked us. After a short wait the triage nurse spoke to us, and given my mental state we couldn’t believe what we were hearing when she advised that the mental health team on duty would not see me. We were told that they only see people who they believe are actively planning to commit suicide imminently. We were sent packing and told to contact my GP in the morning.
  • I did go to the GP the next morning, a new one to me who I had seen once previously. She clearly had empathy, which my previous one didnt have one iota of. The GP said that I was clearly at ‘Crisis Point’ and she sat in front of me dictating, in her own words, a begging letter to a local psychiatrist she had seen at a recent seminar. Coincidentally, he worked in the Urgent Care Team who a short while earlier had considered my case not serious enough to require prompt attention. Eventually I did get an appointment to see him, but by this point we had sought help elsewhere as I needed help urgently. With the help of family and a family friend, we looked into private care and eventually got the name of a private psychiatrist who came very highly recommended. Being introduced to this psychiatrist was to prove life changing, as will be explained in My Story. Chapter Two: A life changing diagnosis @ age 40.
  • Here is a list of all of the medications I have been on at some point in my life in relation to mental illness – 13 in total (excluding the two sleep specific ones): Clomipramine, Fluoxetine, Paroxetine, Citalopram, Olanzapine, Venlafaxine, Mirtazapine, Risperidone, Diazepam and my current daily mix of Lithium Carbonate, Lamotrigine, Quetiapine and occasionally Clonazepam (on an ad-hoc basic if required). Also zopiclone and zolpidem for chronic insomnia.
  • Alternatives therapies: In addition to all the medication over the years I have had considerable input in the form of Cognitive Behavioural Therapy (both privately and through the National Health Service) and occupational therapy. Privately I have also tried many other things in desperation that they may help alleviate my suffering, including hypnotherapy and Emotional Freedom Techniques (EFT).
  • My other debilitating conditions: As if all of the above wasn’t enough of a challenge, I have also spent many years dealing with two physical illnesses, both very debilitating at times in their own right. The first is ulcerative colitis (a form of inflammatory bowel disease) which I was first diagnosed with 18 years ago, the second chronic migraine which I was diagnosed with 11 years ago and currently receive botox treatment for.

If you made it this far, well done and thank you for reading. It means a huge amount to me.

I wanted to end on a very big positive note. Despite all of the pain and suffering detailed above, I’ve got through it. And to think that despite all the years of suffering, my wife & I were able to bring two beautiful sons into the world, and enjoy many joyous times together as a family over the past few years, is an absolute blessing and in many ways quite a miracle.

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