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 9, 2021
One of the big things I’ve missed during the pandemic is concerts. They’ve always been a big part of every year and losing that – I haven’t been to a concert since Halsey’s Manic Tour in March 2020 – has been really hard. But it’s also hard to feel like they’re safe to go to, now that they’re happening again. I still have a lot of anxiety about going out and about being around a lot of people – it’s not as if COVID is no longer a risk – so going to a concert is a big deal. But normal life does have to resume at some point, even if it happens in baby steps. Since this first show – The Shires in Bromley – was a relatively small concert, it felt like a good one to try, to get the lay of the land in terms of safety precautions, to see how I feel in that sort of environment after everything that’s happened over the last eighteen months, and so on.
This wasn’t quite my first live music event: back in September, I went to my uni’s Songwriters’ Circle, the first one in person since before the pandemic. It was just wonderful. Everyone was so excited to be back together, so excited to get to hang out together, singing along at the top of our lungs. That is one of my favourite things about going to a music uni: everyone’s always up for a sing along.
But this doesn’t feel like a first concert to me, since I’ve been in and out of the building for the last couple of months as I finished my final Masters project. It was just some more people and music. Plus, I’m really comfortable with the safety precautions there: negative COVID tests to get in, a one way system around the building, lots of people still wearing masks even though they aren’t mandatory, and so on. I already feel safe there. But a concert is an entirely new ball game.
My first proper concert was The Shires at the Churchill Theatre in Bromley on the 5th October. It wasn’t a venue I’d been to before and road closures made getting there quite stressful, plus it was a pretty bad pain day: my back, my shoulder, and my wrists and hands. So while I knew I would enjoy the show itself, I wasn’t sure whether the stress and the pain would override that. Fortunately getting in was quick and easy and I didn’t have to spend too long on my feet. And although no one had to wear a mask once seated, negative COVID tests were required for entry so it felt as safe as it can, as anything can be at the moment.
Jake Morrell was the support act and he was great: he was funny and personable and had some good songs. My favourite was ‘This House,’ I think. And I liked ‘Freewheeling.’ I definitely want to check out more of his music.
And then The Shires – Ben and Crissie and some of their band – were on. It was so nice to see them; I’ve seen them so many times over the years and the eighteen months since the pandemic began may be the longest I’ve gone without seeing them. So, as I said in my Instagram post, it felt quite apt that my first proper concert back was them. It was a cool twist on their normal shows: it was all acoustic (being in the front row, it did feel a bit like my own personal concert) and they took the opportunity to play a lot of the songs that they don’t play often or haven’t played for years, like ‘All Over Again,’ ‘Drive’ (one of my favourites), and ‘World Without You.’ Of course they played the favourites too, like ‘Nashville Grey Skies,’ ‘State Lines,’ ‘Tonight,’ and ‘A Thousand Hallelujahs,’ which always get people singing along and dancing. Of their most recent album, Good Years, which they never got to tour due to the pandemic, they only played two songs and they happened to be my two favourites: ‘Lightning Strikes’ and ‘About Last Night.’ So that was cool. And they also played one of my all time favourites of theirs, ‘Daddy’s Little Girl.’ I connected to that song instantly – it being about the loss of a father and how, whatever else you are or end up being, the most important thing you’ll always be is his daughter – and it’s remained very special to me. I actually posted a short cover of it on Instagram years ago:
And to make a cool concert experience even better, they performed a couple of songs from their next album, that is apparently written and produced already so hopefully it won’t be long before we get to hear that. Of the two songs they played, I loved ‘Side by Side’ and I can’t wait to hear it again already. So that made the night extra special.
It was painful – as most things are right now – but it was a good night. It was so wonderful to be at a concert again; they really are my happy place, where I forget about the hard stuff (for the most part – I mean, you can’t exactly forget about physical pain when you’re in it). Hopefully things will continue to improve on the COVID front and concerts can, at some point, come back in full force. That’s the dream anyway.
I was hurting before we got home. I’d stayed sat down as much as possible to protect my knee but apparently my leg has a mind of its own because my foot kept tapping – and therefore flexing my knee – no matter how many times I forced myself to stop. And chronic pain and applause clearly don’t go well together so I think I might have to come up with an alternative for bad pain days (I’ve since found some suggestions here, or maybe the sign language version of clapping is the way to go). And the next morning, my whole body hurt and I was stiff and ache-y. My back and my hands were the worst and unfortunately my painkillers weren’t doing much more than taking the edge off. So that was a pretty unpleasant day but it was worth it.
So that was my first concert back. I honestly thought I’d find it more scary, more stressful – in the pandemic anxiety sense, that is. It was all a bit overwhelming for a moment going in but once we were in the auditorium and the show had started, somehow I forgot about COVID and my anxiety; I was just in the moment and completely absorbed by the music. That wasn’t something I’d expected and it was quite wonderful. All the anxiety, all of the precautions and planning… it was all so very worth it to have live music again.
Category: anxiety, covid-19 pandemic, emotions, event, favourites, heds, medication, music, video Tagged: anxiety, ben earle, chronic pain, concert, concerts, country music, cover, covid, covid-19, crissie rhodes, daddy's little girl, eds, ehlers danlos syndrome, heds, hypermobile ehlers danlos syndrome, jake morrell, live music, medication, pain, pain management, pain medication, pandemic, pandemic 2020, pandemic anxiety, safety precautions, singersongwriter, singing, songwriters circle, the shires, uk country, university
Posted on September 12, 2021
And that’s that. I’ve finished the final module of my Masters and therefore the Masters itself. I don’t know what my grade is for the module or for the whole course yet but frankly, I’ve got a lot to process before I can even really think about the grades and graduation.
Looking back at a similar post before the module started, I was excited about the project but nervous about my health, mental and physical, and whether it would prevent me from doing everything I needed to do, from being able to enjoy the process. And those were valid concerns so I thought, having written a post about how I was feeling before the module started, I’d write another now that it’s ended – like bookends.
A lot has happened since the beginning of May.
Over the last four months, I’ve spent almost every day working on my final project, researching, writing songs, and working on the production of an album. It’s been incredibly intense and now that it’s all done, I’m utterly exhausted, both mind and body. And while, for the most part, I loved it, it’s also a relief to be free of some of the anxiety around it (I’m still struggling with my anxiety around the grade). Having said that, I feel strangely lost and untethered now that I don’t have this big thing to focus on. I know that I need a break but I am looking forward to the next project, whatever that may be. I’m always happier when I’m doing things.
My mental health was pretty good for most of the module, surprisingly so. By my standards at least. I think that the constant creating and the creating of stuff I’m proud of really helped. I had one particularly bad episode of depression, plus a handful of smaller ones, and my anxiety was pretty constant but that’s normal for me. It got very bad in the last month, which was hard to manage – trying not to let it destabilise me was a bit of a battle in itself. It hasn’t quite faded yet. For various reasons, I didn’t have any access to my therapist, which was an unforeseen difficulty and that made things a lot harder than I’d expected them to be.
I also really struggled with my concentration. I’m still not getting any support for my ADHD (something that I hope will change soon but I’m still so frustrated that I couldn’t get any help with it during my Masters) so staying focussed on my project, on my research, took all of my energy. It was exhausting. I felt like my concentration was so, so fragile that a single moment of distraction would break it and then it would be impossible or would take days or even weeks to get back. So I couldn’t stop. Not for anything. That was very stressful and resulted in many, many long days. Sometimes I’d work all day without moving (not healthy, I know) and end up going to bed very late. And then, of course, I couldn’t sleep because my thoughts were racing. So it did a number on my sleep schedule too; I’m surprised I’m not nocturnal at this point.
That, plus the general fatigue I deal with day to day, meant I was tired all of the time. I’ve drunk an obscene amount of Red Bull (my antidepressants make me really drowsy, just to make things even more difficult, although I may be changing medications soon, which hopefully won’t have the same side effects) – I am beyond sick of the taste of it. But it got me through and I’m grateful for that. I will however be grateful to never drink it again (hopefully). And I’m really looking forward to getting both some proper sleep and some proper rest now that my work is done.
I also mentioned back in June that I’d been having migraines that seemed to be being caused by an abscess in one of my teeth. Since then, I’ve been on antibiotics twice, continued to have migraines, and am still waiting to have the tooth removed, a decision that was made at the appointment in June. Given how much disruption it was causing though, I did get extenuating circumstances which allowed me some extra time (although it wasn’t really extra since it was making up for time lost to a medical problem) to cope with those problems. It’s not bothering me presently which is a relief but I’m more than ready for them to take the tooth out, just so that they’re not even problems I have to think about.
While I managed to keep swimming twice a week – a routine I’ve been trying to maintain to create a solid foundation for my crappy joints – I was in almost constant pain throughout the module. At times, my right knee was so painful that I couldn’t walk on it and my back has been consistently painful; my Mum, who used to be a massage therapist, said it felt like trying to massage rocks and now that it’s all over and I’m trying to relax, the muscles feel like their made of concrete. Which is about as pleasant as it sounds. I’ve also had great trouble with my hands and wrists what with all the typing I’ve been doing. So, all in all, I’ve been a bit of a mess. I haven’t had any support for this – the hEDS – either; I’ve been waiting for physiotherapy and hydrotherapy since December 2020 officially and May 2020 unofficially. I’ve just had to try and get by on various painkillers, none of which have been all that effective.
Despite working practically non-stop, I got everything for my project done just in time for my final presentation. My assessors were positive, which I’m trying to hold on to in the wake of my anxiety around the final grade. I’ve been really trying not to attach my self worth to my grades (something I’ve always really struggled with), or at least, lessen the power my grades have over me but I can’t help the fact that I really want to do well. I’ve worked so hard – with so many obstacles – and the idea that that still wasn’t enough to get a Distinction would be upsetting. I’d get over it but it would still be upsetting. I never want someone thinking, “Oh, she mustn’t have worked hard enough.” Or worse: I never want to think, “Oh, I would’ve gotten a distinction if I wasn’t autistic or had ADHD or whatever” thoughts left over from my late diagnoses and the resulting difficulty I have in setting standards and goals for myself (more on that in another post). This anxiety isn’t helped by the fact that I keep thinking of things that I should’ve included in my presentation. My brain clearly hasn’t quite processed that the module is over.
And then, just when I thought I could relax, the world tipped under my feet. The next morning, my Mum told me that my Granny had died a few days earlier. She was ninety-three. Having barely started to process the end of my two year Masters and intense final project, this news was just too much for my brain. A few days on, I feel like I’m bouncing pretty erratically between two states, the first being this weird bubble where nothing can touch me and the second being, ‘if I stop thinking or talking or moving for even a second, I’m going to completely fall apart.’ It’s surreal and exhausting and sad. I’d like to write a piece about her at some point because she was such an incredible woman but I can’t really write more than this right now but it felt really important to at least acknowledge what’s happened because it’s so big and so important.
I don’t think there’s anything else to say right now. I’ve barely been able to wrap my head around this last week: my final presentation, the ending of the Masters, Granny, and everything that’s ahead given all of these things. It’s a lot to take in; I’m exhausted. I’m just taking it day by day.
Category: adhd, anxiety, autism, covid-19 pandemic, death, depression, emotions, family, heds, medication, mental health, music, research, sleep, therapy, university, writing Tagged: actuallyadhd, actuallyautistic, adhd, adhd inattentive type, adhd support, album, antibiotics, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic student, break, concentration, death, depressed, depression, drowsiness, drowsy, eds, ehlers danlos syndrome, exhaustion, extenuating circumstances, fatigue, final project, focus, generalised anxiety disorder, grades, grandmother, grandparent, granny, grief, heds, hypermobile ehlers danlos syndrome, hypermobility, identity, inattentive type, late diagnosis, loss, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, mental health break, mental health update, mental illness, migraine, migraines, new album, new music, part time masters student, processing, recovery time, red bull, rest, self worth, side effects, singer, singersongwriter, singersongwriter life, sleep, sleepiness, sleepy, songwriter, songwriting, therapist, therapy, tired, tooth extraction, tooth pain, writing
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.