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 September 25, 2021
After two years of being utterly focussed on my Masters, it’s definitely weird not having something specific to work on, having no deadlines to meet, and so on. It’s strange but also a welcome relief: between working on the module of the moment and dealing with whatever the pandemic threw up, plus my health stuff, it’s been an exhausting time. While I’m excited to start working on the next project, whatever that may be, I do need a break first – to rest, recover, and recharge my body and brain – and there’ve been a handful of things I’ve been looking forward to doing for when I finally reached this point.
These are some of the things I’ve held on to when I really felt the exhaustion or my motivation dipped:
There are also things that I’m less excited to do but they are important and I’ve been putting them off, either because they took too much time and energy away from working or because I was worried about how engaging with them would break what felt like the very fragile hold I had on my concentration, like it would be impossible to concentrate on my project again if I stopped, even for a little bit.
So things like continuing my Pain Clinic appointments, getting the prescription for my glasses updated (my current pair are at least four years out of date or whatever the phrase is – it must be doing a number on my eyesight and it’s probably not unrelated to all of my headaches), figure out what’s going on with my therapy situation, make a definitive decision about my medication, and try again to tackle my Trichotillomania. None of these will be fun or easy but hopefully they’ll all improve my life in the long run so they are worth doing.
So there’s my list. I love a good list. I find that they help me organise my thoughts – my often very restless, whirlwind thoughts. It’s been a tough few months but I’m looking forward to diving into all of these things.
Category: book, covid-19 pandemic, event, family, medication, mental health, music, sleep, therapy, trichotillomania, university, writing Tagged: adhd, adhd inattentive type, adhd medication, album, antidepressants, anxiety, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, blog, blog writing, books, break, depression, exercise, exhaustion, family, films, friends, glasses, inattentive type, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, mental health break, mental illness, movies, music, new album, new music, new projects, pain clinic, part time masters student, recovery time, rest, singer, singersongwriter, singersongwriter life, sleep, sleeping, stim, stimming, swimming, therapy, trich, trichotillomania, tv shows, university, writing
Posted on September 19, 2021
The time has come to sum up the final semester of my Masters. I am done. That’s sort of unbelievable. Given everything that’s happened since I started the course in September 2019, the end of the Masters always felt so far away and although I have lots of plans, I do feel a bit lost now that all of the work is done. Maybe it’s because I haven’t received my final grade or because I haven’t actually graduated yet; maybe once those things happen, the experience will feel a bit more… finished. It was always going to be weird – I’ve been going to this uni on and off for the last seven years – but knowing something and actually feeling it are so different.
So, here is my final semester review.
The final semester of my Masters course involves a largely independent project called the Major Repertoire Project and as long as you’re developing your songwriting skills and knowledge in some way, you can pretty much do whatever you want. People have done projects exploring identity, exploring their heritage, writing song cycles or musicals, digging deeper into their own songwriting and pursuing an artist project like an album, experimenting with newer applications of songwriting (such as in various therapies), and so on. It’s a fascinating module because everyone ends up doing something so different and so interesting. And after a spending a year or two focussing on their craft, the songwriting is so incredible; the final works that I’ve heard are amazing. It would probably take a month but I would happily listen through everyone’s projects.
For my project, I chose to explore my experiences as an autistic woman through songwriting, attempting to translate those experiences both through the lyrics and storytelling and the execution of the song, from the structure to the arrangement to the production and so on. I wanted to write songs that autistic individuals would hopefully relate to and that neurotypical individuals would hopefully gain some insight from. But while the overall goal was to create a body of work, a large part of the project involved researching our chosen area – Autism, in my case – responding to the research (sometimes that was through practice and sometimes it inspired specific songs), and reflecting on my songwriting process and how it was evolving during the project.
The module officially began in the second week of May but I’d already started working on it: I’ve been thinking about this project ever since I applied for the Masters so I was super excited to finally start doing it. But I’d barely begun when I started getting debilitating migraines that lasted for days at a time and resulted in several ambulance visits because the pain was so bad. We eventually traced the source back to one of my teeth: the emergency dentist thought the nerve was dying and diagnosed an abscess. I was top priority for an extraction and given antibiotics (which I had to have a second round of when it flared up again midway through the semester). Fortunately my university granted me an extension – giving me back the time that I’d lost – but it was a flexible extension in case I suddenly got pulled in to have the tooth taken out and needed some recovery time. Due to the long waiting list (and bear in mind that this was the waiting list for emergencies), I still haven’t had the tooth taken out and while the antibiotics and some good painkillers have prevented any more similar episodes, I’ve still been dealing with some tooth pain and migraines. So that hasn’t been ideal.
We only had four classes over the semester but since everyone was researching something different, they weren’t exactly classes. They were more group discussions where we’d talk about how our research and writing was going, whether we were struggling in a particular area, what we could do if we felt like we weren’t fulfilling one or more of the overall objectives, and so on. We had individual supervisors for the more specific guidance and problems whereas this was more general and we were able to share with each other what we’d found helpful, etc. These classes were online but we were finally able to come into the building. With most of the other courses finished for the summer, it was pretty empty and I felt safe there; you had to test negative just to get in the building and with no one around (pre-COVID, it could be a bit of a crush at times), my pandemic anxiety was a lot lower than it usually is when I’m out in the world. Being there after so much time and getting to see some of my friends again made me positively giddy! And there were some friends that I was actually meeting in person for the first time, which was just wonderful! I’m really going to miss it; I mean, I’ll pop in now and then for events and stuff but I’m really going to miss it being part of my day-to-day, week-to-week life.
Anyway. My supervisor was truly awesome. We had fortnightly and then weekly sessions and she was fantastic, not only with the academic stuff but with helping me to manage my anxiety, the things that tripped up my neurodivergent brain, and so on. And while we worked together well, we also had a lot of fun: we went on some epic tangents and there were multiple conversations that we had to mentally bookmark for later in order to actually get our work done. We got on really well and our sessions were always fun and thought-provoking, as well as helpful. I hope that this isn’t the last time we get to work together.
I obviously know a lot about Autism already so, after finding sources for that information, I started writing songs about my experiences and researching Autism further. Having the foundation of knowledge that I did, I think allowed me to research both more deeply and down different avenues since I didn’t have to spend so much time on the basic knowledge. And some of that research, from academic papers to anecdotal stories to art made by autistic individuals, sparked some really interesting song ideas (for example, I ended up writing a love song after watching Love on the Spectrum, which I found both upsetting and deeply depressing as an autistic person).
I don’t want to give too much away about the songs because I hope to release them but, over the semester, I wrote eighteen songs with a handful more that still need finishing. For the most part, I wrote alone – first because it was more convenient and then because I felt like my experiences were conveyed with more clarity that way – but I did work with a few different people, when I was struggling with a concept for example. I wrote with a couple of my friends – Richard and Luce (known as LUCE) – but I also wrote with new people that I’ve met during my time on the Masters – Luke (known as leadmetoland), Phill Vidler, and Katherine Moynihan – which was fun and exciting. It was nice to do both: I love cowriting and the back and forth of ideas but doing so much writing by myself really restored my confidence; I’ve spent so much time cowriting over the last two years and really not that much solo writing so I was nervous when I started to write alone again but after a while, it started to feel really good and that was really exciting.
But while I didn’t manage to write with Richard as much as I’d originally hoped to, we had many production sessions, mostly over Zoom. While I’d never considered the production unimportant, the project evolved to a place where the production was just as key to the representation of my autistic experiences and the emotions attached to them as the lyrics conveying the story or message. So the two of us spent a lot of time working on every little detail. While I’ve always been involved in the production choices of my songs, I’ve also always been aware that Richard knows a hell of alot more than me so I was happy to defer to his judgement. But with this project, for the first time really, I was taking the lead on production decisions – on occasion, I had the whole arrangement and production planned out before the session. But I felt more like a producer than I ever have: I was coming up with ideas that actually worked from idea to execution; I was able to pick out specific instrument, arrangement, and effect details in a way I haven’t been able to do up to now; and so on. Along with the songs themselves, that’s something I’d really proud of. I really feel like I grew as a musician and as a producer.
I absolutely loved working on my project. To be researching and writing songs about something I’m so passionate about was just so creatively invigorating. That’s not to say it wasn’t hard though. There were, of course, periods of doubt, insecurity, and anxiety over the academic elements and whether I’d be able to do as good a job as I desperately wanted to. Plus, some of the experiences I was digging into were pretty raw and writing those songs did get difficult, especially since I was suddenly doing the project without the support of my therapist, something I’d put in place to help me manage that. But apart from one bad bout of depression, my mental health was – somehow – reasonably stable (apart from my day-to-day, ongoing anxiety). As I said in my previous post, I think it was the constant creating (and creating things that I’m really proud of) that did it, that kept everything on a reasonably even keel.
Having said that, my chronic pain was almost constant, worse than it’s ever been. There were periods where my knee, for example, was so painful that I could barely walk and my back so painful that I could barely move. My Mum (once a massage therapist) said that it felt like I was storing rocks in my muscles. It certainly felt like they were made of concrete. Maybe it was my anxiety around the project, I don’t know, but the pain was keeping me up at night. I also struggled on and off with my hands and wrists, presumably from all of the typing, piano, and guitar playing I was doing. God, my various health issues are like freaking buses sometimes. I’m still waiting for physiotherapy and hydrotherapy, have been for months. I’ve just started with the Pain Clinic but one appointment was never going to change anything before the Masters ended. So all I had were various painkillers that were only sporadically helpful.
But my biggest ongoing obstacle was my difficulty concentrating, which I’m assuming is due to my (still untreated) ADHD. Staying focussed on my work was very difficult; I exhausted all of my energy trying. It felt like my concentration was so delicate that the smallest distraction would shatter it and then there was no way to know when it would come back; I felt like I was clinging onto it by my fingertips. So I couldn’t stop (really not healthy, I know). I couldn’t waste a second of it. That was super stressful and I often ended up sitting at my computer for hours and hours; there were multiple fourteen hour days, some successful, some not. People kept telling me to at least take a day off now and then but I just couldn’t. I was too scared of losing my concentration when my hold on it felt so tenuous.
During the semester, I also had a few other commitments; it was awkward timing but they were all great opportunities:
In the last month, my approach reached a new level of intensity. I was working constantly, quickly when my concentration was good and agonisingly slowly when it was bad. But I didn’t stop. I even worked while I ate. I know that’s not a healthy way of doing things but I was just so terrified of getting a grade I wasn’t happy with, that made me feel like I was letting everyone down, myself included. If I wasn’t working, I felt guilty so I just kept working.
Finally it came time to try and distill all my work down to the most important points for the final presentation. My god, that was hard. Months of research, almost twenty songs, and a lot of reflection on my creative process all into an hour… Or, as I said, the most important points. But figuring what those important points were was a real struggle. Throughout the whole Masters, I felt like the module objectives were designed to trip me up – not me specifically, of course, but anyone reading them. Reading them felt like trying to interpret another language that you barely understand so I felt like I was just waiting to discover that I had it all wrong. Maybe it was my autistic brain, I don’t know. My supervisor was great regarding this anxiety but two years of feeling that way made it a hard feeling to exorcise. So I just did what I know how to do and worked through it, hoping it would be enough. And on the 6th September, I had my final assessment. Two tutors watched my presentation and then, after a brief discussion, they asked me a couple of questions, both of which were pretty straightforward to answer. And that was it. The project and the semester was over.
According to the usual rules, the results will be released in twenty working days, although I don’t know if that will apply given that my assessment was so much later than everyone else’s and they all received their results the day after I presented. So I’m just waiting to hear. I’m trying not to stress about my grade but, as I said in my previous post, I’m finding it hard. I’ve been working relentlessly – with so many obstacles to navigate – and the idea that that still wasn’t enough to get the Distinction I want so badly does upset me. I mean, I’d get over it in time but, yeah, it would be distressing. I just really hate the idea of thinking, “I could’ve gotten a distinction if I wasn’t autistic or had ADHD, etc.” I know that that’s not a healthy way to think but the standards and expectations I have for myself are somewhat warped, something that I think is due to the late ASD diagnosis and the clash between twenty-ish years with neurotypical standards and then having to adjust those expectations in accordance with what I now know is a neurodivergent brain. It’s a mess basically. But I’m waiting for the results – they should be out on the 6th October – and hoping desperately that it went as well as I hope it did.
While the ‘project-for-assessment’ is over, I definitely want to keep working on the songs, write some more on various elements of my autistic experience that I just didn’t manage in the timeframe, and then, hopefully, release it in some form. That’s the dream. I’m so proud of so many of these songs and I really, really want people to hear them and hopefully find strength or comfort in them. We’ll have to see because these projects are just so expensive to put together, from the production work to making music videos to all of the marketing.
And while this is a topic for another post, it should be acknowledged that the semester ended on a very sad note. I found out the morning after my presentation that my Granny had died. Between that news and an intense semester’s worth of work and my brain is just at overload. I can’t tell if I’m not feeling anything or feeling everything. I don’t really want to get too deeply into all of this, partly because I’m not ready and partly because, if only on my blog, I want to keep this semester and this project separate. I really just wanted to mention it in the context of all the emotions I’m dealing (or maybe not dealing) with right now.
So that was the final semester. But there’s still a couple more chapters in this story, so to speak. Graduation will hopefully go ahead as planned – in person – in November and then who knows? I guess we’ll have to wait and see.
My apologies if this post is a bit all over the place: everything’s really hitting me and I’m just exhausted but I wanted to get this out while it’s still fresh.
Category: adhd, anxiety, autism, covid-19 pandemic, death, emotions, family, heds, meltdowns, mental health, music, research, sleep, therapy, university, writing Tagged: adhd, adhd inattentive type, anxiety, anxiety disorder, asd, assessment, attention deficit hyperactivity disorder, autism, autism awareness, autism in women, autism spectrum disorder, autistic, autistic adult, autistic student, chronic pain, classes, collaboration, concentration, conference, coproducer, covid test, covid-19, cowriting, deadline, death, dentist, depression, ehlers danlos syndrome, emotions, exhaustion, extenuating circumstances, final assessment, final presentation, final project, focus, friend, friends, gad, generalised anxiety disorder, grades, graduate, graduation, grandmother, grandparent, granny, grief, heds, hydrotherapy, hydrotherapy referral, hypermobile ehlers danlos syndrome, inattentive type, loss, major repertoire project, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, mental health, mental illness, migraine, migraines, musicology, musicology conference, neurodivergent, neurodiversity, online classes, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, physiotherapy, presentation, producer, production, research, research conference, research project, self worth, singersongwriter, songwriter, songwriting, songwriting competition, songwriting process, songwriting project, special needs dentist, specialist dentist, tooth extraction, tooth pain, trd, treatment resistant depression, university
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.