World Mental Health Day 2021

‘MENTAL HEALTH IN AN UNEQUAL WORLD’

As I’m sure many of you know, today is World Mental Health Day and the theme, chosen by the Mental Health Foundation, is ‘mental health in an unequal world.’ WHO seems to be building it around the pandemic, rather than as a problem of its own, but from what I’ve seen in the newsletters and on the social medias of many mental health charities and organisations, most seem to be following the lead of the Mental Health Foundation.

According to the Mental Health Foundation’s website: “2020 highlighted inequalities due to race and ethnicity, sexual orientation and gender identity, and the lack of respect for human rights in many countries, including for people living with mental health conditions. Such inequalities have an impact on people’s mental health. This theme, chosen for 2021, will highlight that access to mental health services remains unequal, with between 75% to 95% of people with mental disorders in low and middle-income countries unable to access mental health services at all, and access in high income countries is not much better.” It goes on to say: “Many people with a mental illness do not receive the treatment that they are entitled to and deserve and together with their families and carers continue to experience stigma and discrimination… The stigma and discrimination experienced by people who experience mental ill health not only affects that person’s physical and mental health, stigma also affects their educational opportunities, current and future earning and job prospects, and also affects their families and loved ones.”

Statistics provided by Mind (x)


I have my own experience with the mental health system – which I do want to touch on – and have heard from many others about their experiences but I wanted to read into the research around these inequalities further, both to get a better factual understanding and to put my own experience in context (beyond an anecdotal one). The research is sporadic at best but here are some of the statistics I found…

ACCESS TO MENTAL HEALTH CARE

  • “NICE [The National Institute for Health and Care Excellence] recommends that people should be able to access services when they need them. However the proportion of people who felt they had definitely seen NHS mental health services enough for their needs reduced from 47% in 2014 to 43% in 2018.” (x)
  • In 2020, it was reported that approximately 1 in 3 people who experience mental health problems are able to access the support they need. (x)

From these statistics, it’s clear that far too many people aren’t getting the support that they need.

INEQUALITIES IN ACCESS TO TREATMENT (x)

  • For those with common mental health problems, 36.2% reported receiving treatment.
  • Women are more likely than men to receive treatment for all mental health conditions, with 15% of women receiving treatment compared to 9% of men.
  • Young people aged 16-24 were found to be less likely to receive mental health treatment than any other age group.
  • White British people are more likely to receive mental health treatment (13.3%) compared to BAME groups (7%). The lowest percentage of people receiving treatment were those from black ethnic minority groups (6.2%).

These statistics clearly show the disparities in the availability of treatment, more supporting evidence for the statement that the Mental Health Foundation is making with the theme for this World Mental Health Day.

YOUNG PEOPLE

  • “There is very little national information about mental health services for children and young people, and what information there is suggests quality is declining. [Research] indicates substantial cuts to services, increasing demand, increasing thresholds for treatment, very long waits (more than a year) for specialist services, and a resultant decline in accessibility.” (x)
  • Approximately 1 in 3 children and young people with a diagnosable mental health condition get access to NHS care and treatment. (x)
  • More than 338,000 children were referred to CAMHS in 2017, but less than a third received treatment within the year. (x)
  • Around 75% of young people experiencing a mental health problem are forced to wait so long their condition gets worse or are unable to access any treatment at all. (x)
  • In a YoungMinds survey, three-quarters (76%) of parents said that their child’s mental health had deteriorated while waiting for support from Child and Adolescent Mental Health Services (CAMHS). (x)

This research all indicates that young people in particular are being let down by the health care system.

SECONDARY [LONG TERM] CARE

  • Demand for secondary care (which generally treats people with severe mental health problems) is increasing, and there is evidence to suggest services are becoming less accessible… There is little information available on the outcomes that services achieve.” (x)
  • “There is no high quality national information on waiting times for secondary mental health services. In a 2014 survey, 20% of people with severe mental illness who were offered talking therapy reported waiting more than a year to access it.” (x)

The statistics show not just that the need for mental health care is increasing but the need for long term mental health care is increasing but that it’s also very difficult to access.

HIDDEN WAITING LISTS (x)

“A study of 513 British adults diagnosed with a mental illness also reveals the damaging consequences that hidden waiting lists – the wait between referral and second appointments – have on the lives of patients living with severe or common mental illness.”

  • “Of those on a hidden waiting list, nearly two thirds (64%) wait more than four weeks between their initial assessment and second appointment. One in four (23%) wait more than three months and one in nine (11%) wait longer than six months.”
  • Respondents living with severe mental illness – including eating disorders, bipolar disorder and PTSD – were left waiting up to two years for treatment. Others were left waiting up to four years for treatment for depression, anxiety and suicidal thoughts.”
  • Two-fifths (38%) reported that they, or someone on their behalf, had contacted emergency or crisis services while waiting for their second appointment, while 39% said that waiting led to a decline in their mental health.”

It’s clear that, beyond the difficulty of even getting into the mental health care system, once in it, the process of actually getting the support you need is much too slow – so slow in fact that it’s exacerbating the mental health problems that those waiting are seeking help for.


Now I want to look at my experience of getting support for my mental health…

  • For more than two years, I was repeatedly dismissed and had my feelings and experiences invalidated by multiple doctors and services. No one took me seriously. Eventually, my Mum took me to a private psychiatrist and I was diagnosed with Generalized Anxiety Disorder, Social Anxiety Disorder, Depression, and OCD. Having had no idea what I was struggling with, I’d done a lot of research and asked about the quiet presentation of Borderline Personality Disorder, which my psychiatrist initially rejected but then reconsidered and diagnosed me with it after reading my research and personal notes (it has since been recommended to me multiple times – sometimes by doctors who don’t even know me – that I have this diagnosis removed from my file because “people might make assumptions”). Getting an NHS referral for an Autism Diagnostic Assessment was similarly difficult as he felt that I didn’t fit the classic presentation (I do apparently fit the classic FEMALE presentation though).
  • There was no follow up after this diagnosis and we were told there was no support available so my Mum investigated private therapists. I tried CBT for a while but didn’t find it helpful so I tried DBT instead, which has been a much better fit.
  • All of this private treatment is obviously not cheap and I am so beyond grateful that my family is fortunate enough to support me financially. I honestly don’t know where I’d be without it, whether I’d even be here. But the cost of it does cause me significant worry, only adding to the anxiety I already experience.
  • With so many of my problems connected to my Autism, had this whole process been… easier, simpler, quicker, less traumatic, or something… so many of my health problems wouldn’t have deteriorated to the level that they have. Had I been diagnosed earlier – had even one medical professional believed me – things might’ve been so different. I try not to dwell on that because there’s no point wasting my energy on what might have been but it is the truth.
  • Having said that, considering some of the stories that I’ve read or have had shared with me, my story isn’t that bad. I’m positively lucky compared to some and that’s a confusing, complicated thing to say, knowing how traumatic this has all been… and continues to be.

Since then, I’ve developed near constant chronic pain throughout my body – something that’s obviously had a big impact on my mental health – but over a year later, I’m still waiting for the NHS physiotherapy and hydrotherapy referrals to go through. I have started Occupational Therapy and with the Pain Clinic (both through the NHS) but with the end of my Masters, I had to take a break because they were too painful and/or upsetting to manage alongside all the work. I’m starting back this week. It still bothers me that no one’s ever even tried to find out why the pain started though.

Almost six years after my ASD diagnosis, the Neurobehavioural Clinic called to offer me an appointment, to do what I had no idea. But at the end of the two part session, I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome and ADHD – aged twenty six – both conditions having gone unnoticed because no one had ever taken my associated problems (problems that have been there my whole life) seriously. They’re both conditions that often occur alongside ASD. The hEDS diagnosis would, in theory, push my physiotherapy and hydrotherapy referrals but, as I said, I haven’t heard anything and almost a year later, my ADHD is still untreated. My psychiatrist was happy to ‘move’ that condition to his care but the consultant I saw didn’t want that, which is especially frustrating because she’s so difficult to get in contact with.

And finally, I may be getting answers to another ongoing medical problem: severe dizziness, light-headedness, nausea, physical weakness, and breathlessness when I stand up for too long. We’ve been trying to get support around this for so long that I can’t even remember when it started. This too may well be related to my Autism and I can’t help thinking that it’s another thing that should’ve been discovered sooner.

All of these things have had a profound impact on my mental health and going through the agonising process of diagnosis again and again has left me wary, fearful, and angry at medical professionals. It’s deeply ingrained in me to be polite and respectful but it doesn’t take much to send me flying off the handle; I walk into each appointment feeling like a tightly coiled spring. I leave pretty much every appointment in tears at best, raging at worst. Because I’m so. freaking. tired. of feeling like this. Of feeling like no one believes me, of being made to feel like I don’t know what I’m talking about, of being made to feel like I don’t know what I’m feeling. I feel so worn down by the constant let downs. At this point, I think I’m only going back because I don’t know what else to do.


I have no doubt that social media will be filled with nice words and encouraging quotes today. But we need more than that. World Mental Health Day is about more than that. Or it should be. It should be about pushing for change and improvement. The Mental Health Foundation is absolutely right that the inequalities in the mental health care system need to be addressed but looking at these statistics, it’s also clear that the standard of care needs to be better. For everyone’s sake. After all, there’s very little difference between not getting any support and being on a list waiting years for support.

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Another Anna Akana Video I’m Grateful For

In the middle of my recent bout of depression – the worst one I’ve had – at my lowest point, an Anna Akana video appeared in my YouTube subscriptions. It was called ‘the voice’ and it was about her new short film that was being released the next day.

She talks about how, while 2017 was the best year of her life, her depression was also at its worst. There was a voice – that felt like it was in the room with her – telling her to kill herself. And it got to the point where she had a plan for how she was going to go through with it, which is a major red flag.

“I was just so in pain and I just felt like I had nothing and like I was nobody and I wasn’t worth anything at all and I literally… I have this big whiteboard on my wall and I wrote out DO NOT KILL YOURSELF, like all across it. I put it on post it notes and I put it on my bathroom mirror and like… everyday when the voice came and I would be like ‘SHUT THE FUCK UP!’”

While she still struggles with depression, she says she’s out the other side of that particular battle and she credits getting through to all the mental health education that’s out there and all the things you have to do everyday, hoping that they add up. She also made this new short film, pouring everything into it because she needed something to remind herself of why she’s here. It’s about the moments she wanted to die and all the things she had to live for. I would include it in the post but I just really want to focus on this introduction video (but you can find the short film here). Maybe I’ll write a full post about it when I’ve sorted out all my feelings about it.

I am so grateful for this video. Talking about this stuff is so hard and so to have this raw and uncut video where she talks about this experience but also how she got through it was and is so important to me. It’s helped me in this incredibly hard period and so I wanted to share it here.

“Please don’t kill yourself if you’re also suicidal… just don’t do it. There’s a lot… there’s a lot of great things to live for.”

Describing Depression

I love words. I LOVE words. And that’s so viciously ironic for someone living with Autism and mental health problems because they are so difficult to describe, to talk about, to truly put into words. I’ve talked about how much I write and how much I document (this post here) and every now and then I think, “Oh my god, I’ve got it. That’s how it feels.” And then I go to therapy or I talk to a friend or teacher and I go to describe how I’m feeling and I’m just left scrambling. Because these things are so hard to put into words.

Let’s talk about depression specifically. This one seems to have a lot of metaphors attached to it:

  • Living in darkness – With the associations between light and good and happiness and therefore the associations between darkness and bad and sadness, the connection here is obvious. It’s also a metaphor that fits with the feeling lost and directionless and not knowing how to move forward. And living in it implies a terrifying finality.
  • Winston Churchill’s black dog – We can’t know for sure what Winston Churchill’s mental health was like, whether he suffered from mental illness, from depression, but he did describe periods of great despair that he referred to as his ‘black dog,’ that came and went as it pleased. (While I can understand this metaphor, I personally really don’t like it, being the owner of the the gentlest, sweetest black dog and therefore nothing like Churchill’s description.)
  • Having a dark cloud follow you around – Weather metaphors are common in mental health, maybe it’s the all encompassing nature, maybe it’s the lack of control we have over it that makes it a fitting metaphor.
  • Being surrounded by fog – Similar to the weather metaphor, it’s uncontrollable and overwhelming. It blots out the sun, makes good indistinguishable from bad, makes it difficult to make your way forward.
  • JK Rowling’s dementors – Everyone who’s read Harry Potter knows of dementors and the effect they have on people, essentially sucking the happiness, the joy, the life out of people. JK Rowling has talked about how dementors are the embodiment of her depression, not unlike Churchill’s metaphor.

There are more, of course: everyone has their own descriptions (and they can change depending on the particular state of the depression). On which note, I thought I’d throw in a few of my own:

  • Feeling like I’m filling up with water – When I’m deep in depression, I feel like my body is filling up with water and the water level gets higher and higher until it’s reaching my mouth and nose and I start to feel like I’m going to drown in it. And sometimes it feels like something more sinister than water, like ink or oil.
  • Feeling like I’m deep underwater – Sometimes I feel like I’m in it so deep that I can’t even see the surface so I don’t even know, which way to swim. And down there, I feel so alone.
  • Having a black hole in my chest – On a day to day basis, it drags everything in, making it difficult to even know what I’m feeling before it’s gone and on bad days, it’s so strong that it can feel hard to even stand up straight.
  • Feeling like there’s a darkness inside my chest, but deeper than is physically possible for a human body – That’s the only way I can describe this sensation. I understand the dimensions of my ribcage but it feels so much deeper than that, miles deeper. And there’s a darkness there, an ache, like this incredibly deep well of misery.

I posted this on Instagram a while ago:

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“Ever since I saw @littlepineneedle’s post and the hashtag #seemyinvisible, I’ve been thinking about it and how I could visually represent the things I struggle with. But in the end, I decided just to look at how I’ve been feeling lately. My mental health is a constant balancing act but lately, my depression has been overwhelming. It feels like there’s a black hole in my chest that’s trying to suck everything in and it’s all I can do to stand up straight. Nobody can see it and that only feeds it. It’s been really inspiring to see so many people sharing their stories over the last few days. This is one of the reasons why #mentalhealthawareness is so important: it helps us to feel less alone.” (x)

I’m not entirely sure what I’m trying to do with this blog post. I guess, I’m just trying to put this thing into words.