Wednesday 29 August 2018

Mental vs Physical Illness: Stigma and Disability

By Roiben

I know a lot of people who struggle to see Mental Illness as a disability. Some of this is due to years of Stigma, perpetuated by a media and government which all too easily labels people as scroungers. We are accused of not trying hard enough, of just needing to pull our socks up and get on with it, and in doing so to, somehow, magically get better.

In my opinion Mental Illness is more often than not a Chronic Condition and very much fits the criteria of a disability. By way of an example, I have Type 1 Diabetes, which I manage with medication and changes to, and monitoring of, my diet and wellbeing. I have times when it is well controlled and pretty much routine day-to-day. I have other times when it is less controlled and I need to seek the advice of medical professions and maybe even go into hospital. I have been diabetic since I was four years old and it isn’t going to go away anytime soon.

I was first diagnosed with a Mental Illness when I was twelve years old. I have had times when I have been well, when my symptoms have been controlled with medications. I have had other times when I have been in crisis and needed medical intervention, changes to medication and therapy.

In my view, my Mental Illness does not go away in those periods when I am well. I am not cured. Instead, it is managed and controlled and therefore less problematic.

It astounds me that there is Stigma around the idea that people with Mental Illness can just choose to be well. It is rare for someone with diabetes or a sprained wrist to be told to think themselves better, so why do we do it with Mental Illness? Why does it have to have a time-scale before the person is clearly not putting the effort in to get better?

I would not choose to have the sometimes horribly disabling symptoms of my Mental Illness any more than I would choose to go into Diabetic Ketoacidosis (DKA). In either case I opt for medications, simply because that very medication is lifesaving.

We as a society need to realize that the mind, as complex and confusing as it can be, is a part of the body and has physical and psychological manifestations just like any other part of the body. The fact that my pancreas fails to produce insulin should not be any more believable or important than the fact that I have a Mental Illness.

Why do people have to be in absolute crisis with their Mental Illness before they are taken seriously and believed? Why is the emphasis placed on people actively acting on suicidal urges. Surely there should be recognition and a pathway for treatment long before someone attempts to act on them?

Surely there should be a prevention rather than cure model, like there often is for physical ailments? Shouldn’t we be doing more to view Mental Illness as an illness of a part of the body, as we do with Diabetes and Asthma? Both are chronic conditions that, despite facing their own Stigma, get much better treatment by medical professionals than someone who presents with a Mental Illness related issue. They also get much better treatment by the media, by the government and by society as a whole. Yes, Stigmas are still present, but people are much more rarely told to “just get over it” when they are hypoglycemic or having an asthma attack.

Mental Illness is a disability, and a very complex one at that. It requires far more understanding of nuances and individuality than illness with other parts of the body may require. The situation is the same, though. A part of the body is malfunctioning and may always malfunction going forwards. It requires appropriate treatment, attitudes and support. Without those treatments, healthy attitudes and support, the malfunction will get worse not better. Ultimately the person may stop attempting to get the help they need and very much deserve.


About the Author

You can find Roiben on Twitter (@roiben).


Wednesday 22 August 2018

Twenty-Plus Years of Misdiagnosis and Incorrect Treatment

By Chris Good

Originally posted on the author’s blog.

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

Chapter One: Twenty-Plus Years of Misdiagnosis and Incorrect Treatment (this post)

Chapter Two: A Life Changing Diagnosis at Age Forty

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 forty is in excess of twenty 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 fulfillment 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 thirty-nine, 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 stabilizer (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 or 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 sixteen 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 this 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 cannot 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 six and three. 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 through a park one day, tears in my eyes and feeling completely lost and hopeless. For a moment, I understood one hundred per cent 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 3 a.m. 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 didn’t 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 Chapter Two.
  • Here is a list of all of the medications I have been on at some point in my life in relation to mental illness – thirteen 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 eighteen years ago, the second chronic migraine which I was diagnosed with eleven 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 and 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.

About the Author

Chris Good is primarily a husband and dad to two young boys. He also has considerable experience of a long term battle with mental illness, but is a novice when it comes to blogging. Rather than feeling resentful about the hand he was dealt and following the enlightening experience of a correct diagnosis at age forty, Chris is now intent on sharing his story to provide hope and inspiration to others suffering from prolonged mental health challenges that a fulfilling and rewarding life is still achievable. Chris believes that his experiences and years of struggle make him uniquely placed to help and empathise with those suffering from similar mental health conditions.

Chris’ first contact with a psychiatrist was at age sixteen and the diagnosis for the next twenty-odd years was a combination of treatment resistant depression and anxiety. In early 2018 Chris saw a highly experienced psychiatrist who completely reviewed his case and confirmed that he had been misdiagnosed and mistreated for many years. He has now been diagnosed with ultra-rapid cycling bipolar disorder. On receiving this diagnosis Chris conducted extensive research on the condition and so many things about his life and his struggles over the years finally made sense.

Chris qualified as a Chartered Accountant in 2002 whilst working with one of the “Big Four” accountancy firms. Other than his family, Chris’ main passion is cycling. He used to cycle competitively but now cycles for pleasure and fitness. Due to his long term struggles, Chris has found it extremely difficult to hold down a pressured career and to cycle consistently over the years. Chris has also suffered for many years with ulcerative colitis and chronic migraine which also make work and cycling difficult at times.

Whilst a correct diagnosis and being put on correct medication came as a huge relief to Chris and his family (and in many ways felt like reason to celebrate!) he realises that that the condition will require careful management, self-care and treatment for years to come.

Chris’ motivation to be the best person he can be is clearly his family. He feels that during their young lives to date, despite many special and enjoyable times together, his children have witnessed a dad who was just not fully alive. Now that he has been correctly diagnosed and is on the right medication, Chris is determined to change that.

You can find more about Chris and his work on his website, on Twitter (@chrisgood78), and on Instagram.


Saturday 18 August 2018

Poem for Marty

By Sarah Fader

Everyone has their own darkness
Mine is outside of my skin at times
Creeping slowly around
the confines of my mouth
not allowing me to speak
only telling me to feel
what I don’t want to feel.

You see my dark and
also the light even when
it’s hard to find
even when
it’s invisible to everyone around me.

That is your power
That is your gift
You sit quietly
as she talks
she cries
she needs you
and you’re not afraid
in fact you embrace the raw feelings.

I’m relieved to know that there are people
like you in the world
Thank you for loving without question
and embracing us without fear.

Don’t change who you are
Keep listening
It matters.


Sarah Fader is the CEO and Founder of Stigma Fighters, a non-profit organization that encourages individuals with mental illness to share their personal stories. Like six million other Americans, Sarah lives with panic disorder. Through Stigma Fighters, she hopes to change the world, one mental health stigma at a time. You can find Sarah at


Wednesday 15 August 2018

Not to Punish but to Understand

Sometimes it happens that you read or hear or experience something so sharp, so surprising, so out of left field, so TRUE that it stops you in your tracks. That’s what happened the other day when I came across this quote on social media.

Imagine meeting someone who wanted to learn your past not to punish you, but to understand how you needed to be loved. (Author unknown)

There is personal relevance in the words, for me and others in my life right now. But that’s not what I want to write about. What I want to explore — and I am writing as much for me as for you, dear reader — is why it would ever be otherwise. Why are those lines so shocking? Ought not every person we meet — certainly every person we allow in close — approach us in such a way?

Perhaps. Well, yes, in fact. But for a whole heap of reasons silence and stigma and shame remain powerful forces in society at large and in the smaller, more immediate communities in which we live out our lives. Wherever we meet — in our families, schools, colleges, places of work and of worship — the response to us, to our stories and histories, so often falls short of the caring curiosity for which we yearn.

Sadder still, we punish ourselves for what we have done or said, or failed to do or failed to say; the times we believe we have let ourselves or others down. How rarely do we approach ourselves with compassion?

What would it feel like if we did? How would it feel to explore our own stories wanting not to punish but to understand how we need to be loved?


Wednesday 8 August 2018

Even the Good Things: A Lesson in Letting Go

There are moments when everything stops.

I felt it yesterday after a week or more filled with activity and people and work and possibilities and doubts and anxieties and joys and new friends and old friends and smiles and conversations and sharing and a movie that touched me deeply.

After all of that there came a pause. Not an ending but a natural hiatus, like the moment between breathing in and breathing out that we fail to notice most of the time because we are too busy doing or saying or thinking about other things.

And I didn’t know what to do with it. The gap. The space. I told Fran I felt flat. And she said:

Embrace the flatness

That was it. Three words. She knew I didn’t need a lecture or a diagram or a two hour conversation. And she was right. And what came to me in that moment of being reminded (re-mind-ed) was something we have been working with over the years we have been friends.


It can be challenging to handle powerful emotions, especially when they seem to come out of nowhere. Rather than allowing our emotions free rein, or trying to deny them, we find it helps to accept what we feel, take whatever meaning we can from the experience, and then release our attachment to it so we can move on.

High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder

And so that’s what I did. (In this context, “Embrace” can stand for the first three parts: Feel, Claim, Love.) I felt what I had labelled as “flatness.” And found that it was not empty or still at all. At its “flat” surface emotions rose and fell back, shifting in and out of existence even as I became aware of them. It was a dynamic emotional silence like the kind of acoustic silence that is alive with ambient sound. I smiled.

I claimed it as mine. No one else was responsible or to blame. No one else in the history of the universe past, present or future had known, or knew, or would know this moment as I had the capacity to know it. This was mine. This was me.

And I loved it. Or rather I was aware of a rush of love that began with me and expanded out to all my friends, family, all the people in my life, all the events and connections between them and me and within them and between us all. A moment of acceptance. The kind that makes you sigh out loud.

And letting go? I recalled a poem I’d read aloud to Fran a few days before. It wasn’t new to us but some things are worth revisiting.

She Let Go, by Safire Rose

Like a leaf falling from a tree, she just let go.
There was no effort.
There was no struggle.
It wasn’t good and it wasn’t bad.
It was what it was, and it is just that.

And I let go. I let go of my expectations of what flatness ought to be. I let go of any judgment about what I was feeling or not feeling or doing or not doing. I let go of my attachment to even this moment of bliss. And I smiled again, hearing a friend’s words clearly in my mind:

Vikki: Even the good things I’ve got to let go?

Martin: Not the things, but the feels, yes. How else can the next feelings arrive if you’re holding on too tightly to the old ones? You don’t have to let go of them immediately, just don’t hold on too long. It’s mostly the bad things we hold on to too long.


Wednesday 1 August 2018

What a Week That Was!

I’m writing this at AMT Coffee in Newcastle’s Central Station. I am meeting a friend in an hour or so but right now it’s Marty time.

Just over a week ago I attended Newcastle Recovery College Collective’s leaving party at Broadacre House. The college is moving to new accommodation in the autumn and there was a distinct “end of an era” feel about the event which amply demonstrated how important ReCoCo is to those who use it. I had a fabulous time listening to the karaoke (Vikki you were awesome!) and even got up to dance at one point. Thanks to everyone for making me feel so welcome.

The following day I volunteered for Time to Change at Newcastle Pride. This was the third time I’d done so and as usual I had a great time catching up with old friends (hi Carol, Angela, Aimee, and Amanda) and making new ones (hi Nicki!)

We were there to engage with folk visiting the event, to share information and answer questions about Time to Change, and to help encourage a more open approach to mental health. I lost count of the conversations I had but one or two in particular left an impression on me. As I told a friend later:

For me, what makes it so worthwhile is when I am talking to someone who might not be used to sharing about their mental health and I comment or ask a question and they are like “yes!” In that moment there is this really genuine human connection. That happened a few times today.

Monday was a big day for me. It was my debut appearance on the Executive Team call at work. I was there to present the mental health initiatives I’ve been helping develop with the rest of our fledgling mental health team. I’d got myself all stressy about the technology side of attending the call, but thanks to several colleagues especially my fab boss Judith, and Cheryl who let me impersonate her for the occasion, it all went smoothly.

My main objective was to gain approval for the company to sign up to Time to Change’s Employer Pledge Scheme. It says a lot about our leadership team that my recommendation was approved unanimously. I’m looking forward to taking the initiative forward in the weeks to come.

Outside of work my week has been rich and full with phone calls and chats and face-to-face conversations with friends near and far. After a couple of weeks’ break I’ve also got back to my writing, with a new article on bipolar anger for bp Magazine. In something of a departure for me I have been able to draw on a wide range of experiences generously shared by others. It has broadened my knowledge and awareness and the final article will be far richer for it. Anger is a fascinating topic and I’m already considering a possible follow-up article (thanks Barry for that idea!)

So yes, it has been a busy week! I wonder what the next one will bring?!