Posted on October 10, 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
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)
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.
This research all indicates that young people in particular are being let down by the health care system.
SECONDARY [LONG TERM] CARE
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.”
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…
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.
Category: about me, adhd, anxiety, autism, bpd, depression, diagnosis, emotions, heds, medication, mental health, ocd, research, therapy, treatment Tagged: accessibility, adhd, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, borderline personality disorder, bpd, camhs, cbt, chronic pain, dbt, depression, diagnosis, diagnostic process, eds, ehlers danlos syndrome, gad, generalized anxiety disorder, heds, hypermobile ehlers danlos syndrome, medical trauma, medication, mental health, mental health awareness, mental health care, mental health foundation, mental health in an unequal world, mental health in the media, mental health services, mental health stigma, mental health treatment, mental illness, mental illness awareness, mental illness stigma, neurodiversity, nhs, obsessive compulsive disorder, ocd, private health care, private mental health care, private psychiatric care, research, social anxiety, social media, statistics, stigma, therapy, wmhd, world mental health day, world mental health day 2021
Posted on October 10, 2020
One of the biggest days on the Mental Health calendar.
The theme this year is ‘Mental Health for All’ and this is what the World Federation for Mental Health said about that choice…
Psychosocial support and mental health national plans need to address the mental health consequences of the COVID-19 pandemic and its impact on citizens.
It is therefore of great significance and importance that the theme for World Mental Health Day 2020 will be:
Mental Health for All
Greater Investment – Greater Access
Mental health is a human right – it’s time that mental health is available for all. Quality, accessible primary health care is the foundation for universal health coverage and is urgently required as the world grapples with the current health emergency.
We therefore need to make mental health a reality for all – for everyone, everywhere.
It’s not a bad message in principal. Everyone deserves to have access to good mental health care, especially when going through the trauma of a pandemic. That would be incredible. But how governments will cope with all of the pandemic related cases when they can’t even handle the current number, I have no idea. In the UK, for example, they’d have to actively stop defunding the NHS and start directing funds back to it and specifically to their mental health services. And the system itself would need a drastic overhaul: we need a system of professionals that can accurately identify symptoms, prescribe medication, treatment, or a therapist if necessary, provide resources such as suggested reading and contacts for local support groups, and schedule regular follow ups. Even the language around mental health is long overdue an update. That’s a massive undertaking but if they can do it, then they have my full support.
But back to World Mental Health Day. This slogan makes me so angry that I almost couldn’t write anything today. Mental healthcare for all, right? We have to have a global pandemic that affects the mental health of the entire world for mental health to truly rise up the list of priorities? So… what? All of us struggling with mental health problems before the pandemic weren’t worth the effort? That’s what the message sounds like to me.
I was diagnosed with multiple mental illnesses at eighteen and Autism Spectrum Disorder at twenty, although I was obviously struggling long before we could put a name on what was happening. And that’s the simple version. The long version involves hundreds of hours of research and phone calls and appointments, tears and screaming and self harming, invalidated over and over and over again. Since receiving my diagnoses and getting support in various forms, when my physical and mental health have allowed me to, I’ve done everything in my power to raise awareness and support for those of us struggling with our mental health. I’ve donated money, taken part in fundraisers, volunteered for research projects, supported charities, attended conferences, and so on. I’ve created art about my experiences and dedicated the proceeds to charity.
I did not and do not expect to change the world alone with these actions but think about every single person who has been doing the same and more up until this point. The message being circulated today on World Mental Health Day with this slogan seems to invalidate all of that. To me, it feels like all of these organisations promoting this phrase are saying that we weren’t important enough before to dedicate serious help or resources to; that our mental health problems weren’t caused by a massive global trauma and therefore they aren’t as important; that there weren’t enough of us to make the effort worth it so they weren’t going to bother; “oh, but now look at how many people need help, that makes it worth doing.”
These organisations do a lot of great work and I’ve always had great respect for them but right now… this feels like a betrayal and a hard one to swallow. Maybe I’m the only one who feels like this, maybe I’m not, but this is my blog and my blog is where I come to talk about how I feel. So there you go.
More voices telling me that my experience isn’t important or valid doesn’t change anything though. I’ll keep working, I’ll keep writing, I’ll keep helping in whatever way I can. Because this is bigger than all of the politics and bullshit that constantly get in the way of improving the lives of people who suffer from mental illness. I truly wish I had something more positive to say, on today of all days, but I don’t. I’m angry. And I’m sad. And I’m exhausted. Never have I felt so let down by the community that is supposed to support me and after all I’ve experienced, that’s really saying something.
Category: about me, anxiety, autism, bpd, chronic fatigue syndrome, covid-19 pandemic, depression, diagnosis, emotions, event, medication, mental health, ocd, research, self harm, therapy, treatment, trichotillomania Tagged: anger, angry, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, blogging, charity, charity work, coronavirus, covid-19, depression, emotional, emotions, fundraising, invalidation, lockdown, lockdown 2020, mental health, mental health awareness, mental health awareness campaign, mental health blog, mental health blogging, mental health charity, mental health for all, mental illness, national health service, nhs, pandemic, pandemic 2020, sad, sadness, world federation for mental health, world mental health day, world mental health day 2020
Posted on October 10, 2018
(Trigger warning for self harm.)
Today is World Mental Health Day.
If I’m honest, I’m not really sure what to say. I’m in the middle of the worst depression I’ve ever experienced and I’m very aware that my perspective, my opinions, my hopes are distorted by that. If this was a video, I might just sit and cry. But this day is important so I’m trying to pull myself together and put something out into the world that is (hopefully) positive (and maybe helpful).
This year’s theme is the mental health of young people. When it comes to things like this, I’ve never felt comfortable talking about anyone’s experience but my own. So that’s what I’m going to do. I hope that’s okay with you guys.
My experience at secondary school was a very mixed one. I spent the first three years dealing with some complicated health problems but by the time I reached Years 10 and 11 (ages fifteen and sixteen for those of you who don’t know the education system in England), I felt really settled. I loved learning, particularly English, Maths, History, Psychology, and Philosophy (real shout out to my teachers in all of those subjects). I got real satisfaction from working hard and that was reflected in my grades. I came out of secondary school with not unimpressive grades, especially when you consider I missed most of the first three years. So I felt pretty good about going into Sixth Form (A Levels/ages seventeen and eighteen).
But that was when it all started to unravel. I really, really struggled. I’d gone from completing the work with ease to barely scraping by. I couldn’t understand it: I was trying so hard and it didn’t seem to make any difference. And I couldn’t see it at the time, but my anxiety was getting worse and worse and what I now know to be depression was creeping in. But I didn’t know it was happening so I just kept pushing forwards. I spoke to a couple of people about the high anxiety I was experiencing but each one told me that anxiety is normal and that was the end of the conversation.
It all came to a head when I failed an exam, something that had never happened before. I’d been told I was all set for an A* and I came out with a U. I was absolutely devastated. I know now that our worth as human beings has nothing to do with grades but I was eighteen years old: I had only ever been valued based on my grades. It’s no one person’s fault but that’s how the education system in this country works. It needs changing.
But back to this little story. I don’t remember much after I opened the envelope and saw that U but I ended up in one of the less used college toilets, self harming repeatedly with a broken paperclip. I don’t know how long I was there (long enough that the automatic lights went off and I was plunged into a very appropriate darkness) but at some point, my friends tracked me down and coaxed me out of the stall. I still remember seeing my reflection: my make up all down my face, my hands shaking, and the scratches barely hidden by my long sleeves. One friend took me to a nearby café, bought me a hot chocolate, and just talked to me. And eventually I told her what I’d done. Her kindness and gentleness was so healing, not for the whole problem but for that very difficult day. I will never forget it and I don’t think I’ll ever be able to repay it.
After that, I dropped out of that course and clawed my way out with two A Levels and an Extended Project, far less than I and everyone had expected of me. I went straight into a music course but had to drop out two days in because my anxiety was so bad that I just couldn’t cope. I spent a year grappling with the anxiety and depression, trying the first of many antidepressants (so many) and trying to retake some of the exams in the hope that I could improve my A Levels (I didn’t end up opening the results of those until after I finished my degree, three years later, but that’s another story). During that year, I tried desperately to get help from the NHS to no avail: my anxiety was so bad that talking to people I didn’t know was practically impossible and they refused to help me if I wouldn’t talk. Eventually we were forced to go private, something that I’m endlessly, endlessly grateful has been possible. And I only managed to get my diagnoses when my university said they weren’t able to help me if I didn’t have an official diagnosis.
It still upsets me to talk about. I asked and asked and asked for help but no one either seemed able or willing to help me. I would not be as twisted up now had that not been the case. The information and support was not available to me, it wasn’t available to my family, and it wasn’t available or deemed important enough (I’m not sure which is worse) to the medical professionals I saw. That has to change. It is not acceptable.
Now that I’ve told my story, I want to include some other important, relevant stuff.
The first thing is that I want to link you to Hannah Jane Parkinson’s recent article in The Guardian. She makes the very important distinction between mental health and mental illness. And this is where, I think, physical health and mental health are most comparable: your mental health is something you take care of (or don’t) everyday, by eating and sleeping well, exercising, talking through your emotions, and so on. Mental illnesses, similarly to physical illnesses, can be caused by not taking care of your mental health but there can also be genetic factors, environmental factors, and just hard stuff going on in your life.
WAYS TO HELP YOUR MENTAL HEALTH:
WAYS TO HELP YOUR MENTAL ILLNESS:
And of course, there is overlap between these two lists.
Where we go from here, I’m not sure. The information about mental health and mental illness is spreading and spreading and more and more people are speaking up. Now we need the right systems to support it: doctors, treatment, government officials who advocate for positive change. For now, that’s all I know. For now, I’m just trying to manage one day at a time.
(And a gentle reminder, my debut single, ‘Invisible,’ which I wrote about my experiences with my mental health is available on iTunes and Spotify and all those places and all proceeds go to Young Minds, a charity that supports young people in their mental health.)
Category: about me, diagnosis, emotions, medication, mental health, response, self harm, tips, treatment, university Tagged: advice, anxiety, depressed, depression, family, friends, health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health in the media, mental illness, mental illness awareness, mental wellness, school, secondary school, sixth form, sixth form college, wmhd, wmhd18, wmhd2018, world mental health day, world mental health day 18, world mental health day 2018
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.