@mugamnesty’s #MadCovidDiaries 12.5.2020
Like the majority of people reading this, I’ve seen a fair number of psychiatrists over the years. With the exception of a few individuals, the care I received from NHS mental health services frequently left a lot to be desired. I am immensely grateful to my family and close friends, who helped me through the darkest and most frightening periods of my life. Without them I’d certainly be dead.
This lockdown has given me an opportunity to learn more about the malfunctioning system used to treat enduring mental illness in the UK. From my experiences alone I’ve witnessed cruelty and endless idiocy, but what I have read over the past few weeks has shocked me to the core.
With the obvious exception of some individuals, the prevailing attitudes among employees of the NHS mental health care system are a patronising disrespect for unwell people and a ‘box-ticking’ mentality when treating life-threatening mental illness. This frequently and easily expands into abuse, racism and neglect. To make matters even worse, our national media repeatedly downplays the suffering of those under the care of MH services – in favour of the easy glorification of a chronically underfunded, corrupt and failing health service.
In light of all this, I’d like to describe the three years of care I had from the only decent consultant psychiatrist I’ve ever met. Additionally I was very lucky to have a supportive, kind and sensitive care co-ordinator. Names have been changed – I refer to my care co-ordinator as R, and the psychiatrist as Dr K. I will not say where I was treated. The care I describe below was only as an outpatient.
I am sharing my experience because it appears to be an anomaly; when in fact decent and predictable care is and should always be a human right.
I am happy for this piece to be shared – perhaps it might give a framework to others in terms of demanding appropriate and empathetic care, although I know that we have the ability to know what is right for us as individuals. I don’t want to undermine anyone or be patronising to those who have fought their way through mental health services. I am not an expert, merely another mad person who wants to see a change.
Listed below are key incidents and features of my care that contributed to my recovery.
- When I suddenly stopped taking all my anti-psychotic and anti-depressant meds, Dr K and R didn’t react. I was not admonished, judged or guilt-tripped. They said “that’s ok, it’s understandable” and helped me to start taking the medication again. Despite being physically ill from withdrawal, I was allowed to do so slowly and at my own pace. R checked in more frequently to see how I was feeling.
- In the first few months of treatment, I tried multiple anti-psychotics and anti-depressants before finding what worked for me. Whilst the side effects were distressing and uncomfortable, I was never scolded for not wanting to continue with a particular drug. The whole process was awful but Dr K and R were extremely calm and supportive. My concerns about effects on my physical health were always acknowledged and their support gave me confidence to ask my GP for help when I needed it.
- Dr K always considered the long struggle I’ve had with anorexia when prescribing medication. He listened to my concerns about weight gain and was careful to prescribe anti-psychotics that were less likely to cause this for me.
- Treatment plans were made as suggestions, not orders. This was a key part of my recovery. The only time I was forced to comply was when I was admitted to hospital (voluntarily) and I felt forced to do this voluntarily mainly due to the presence of an additional psychiatric nurse during a home visit (another story for another time).
- R respected my privacy. She asked questions that she knew I’d feel comfortable asking for whichever setting we were speaking in (either at my home or at outpatient facilities).
- Crucially, R did not react. I was able to tell her about the severity of my self-harm without feeling judged. I was allowed to describe suicide plans without fear of being either sectioned or conversely, dismissed. R let me work through difficult emotions and behaviours without overly pathologising or judging them – and she taught me how to deal with them myself.
- Most importantly, I was allowed to NOT have a diagnosis.
Dr K initially mentioned schizoaffective disorder, but following no reaction from me or my parents he let it go. A year or so later I was battling crashing lows, strong unidentifiable emotions and periods of being quite high. I attempted suicide a number of times and could not stop self-harming. At one appointment I felt quite desperate and asked “why is this happening to me?” Dr K calmly explained that these symptoms could be features of BPD and/or bipolar disorder, but talked about them as passing features rather than lifelong associates of my personality (despite my suffering for a number of years).
I don’t know whether I could have been diagnosed with either BPD or bipolar and it’s not for me to say. When I was referred for DBT the paperwork clearly showed that a BPD diagnosis was on the table, but I am glad that this wasn’t pursued further.
Dr K always took the severity of my symptoms into account; but aimed to alleviate my distress instead of labelling it. Unlike other mental health professionals he never talked about “your depression” or “your anorexia.” This language makes a difference.
Diagnoses are hugely and rightfully helpful for many people, but it is a massive relief that I have never had to fight for an undiscussed diagnosis to be taken away from my name.
It’s been some years since my initial breakdown, but my mental health isn’t particularly stable. I know I have ‘an illness’ but it’s been a relief to not have my trauma dismissed, or aspects of my personal life and history labelled as bullet points on a leaflet. Freakishly strong emotions are debilitating and every episode of illness is horrible for me and my family – but I’m very grateful to not be fighting the politics of a warped diagnostic system on top of everything else.
This piece won’t be helpful for everyone, and I am fully prepared for others to disagree with me. My point here is that every illness is different for every person. I wish this was consistently taken into account by mental health services, instead of their notorious pigeonholing as seen with BPD diagnoses – which are famously common among young, self-harming females such as myself.
I WANT my mental illness to be unspecified. Knowing that it can take multiple forms is easier emotionally than being told that my personality is a lifelong disorder or disease. I know I need medication, I know that my emotions are significantly stronger than those of others and I know there will be times that I will have to fight myself to stay alive. Through all of this I believe that the greatest gift I have been given is to not have a diagnosis. I’m also very glad that I’ve never had to be mindful with a raisin.
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