Posted on October 10, 2023
If you’ve been following me for a while, you’ll know that I find awareness days, like World Mental Health Awareness Day and Mental Health Awareness Week, really hard. I find it really frustrating to watch so many people – businesses, celebrities, every man and his dog, etc – jump on the #MentalHealthAwareness bandwagon just to show that they really do care about mental health, to prove that they are socially engaged and empathetic (before reverting to their previous routine of never discussing the subject). I have absolutely no problem with people not making it their primary social cause; I do have a problem with people trying to claim social credit by talking about it for one day a year.
I also struggle with the consistently vague annual themes that many charities and organisations stand behind. This year, the World Federation for Mental Health announced that their theme for 2023 is ‘mental health is a universal right,’ to which my immediate reaction was, ‘No shit.’ What is that supposed to mean? That everyone deserves to have good mental health? That everyone should have access to mental health support? Isn’t this blatantly obvious? The problem is that we’re stuck with outdated medical education, out of touch care providers, no support services, and no money to fix any of it. So how does this vague statement help? What does it change? We need more. We need better. We need support and education and resources. We need a government that cares about the people it serves, that cares about the wellbeing of the people it serves. But instead, we have a group of entitled, morally-bankrupt, evil narcissists who only care about money and power.
I’m sick of feeling so angry and I’m sick of feeling so powerless. I doubt there’s anything that can truly change that, aside from massive institutional change. But it doesn’t seem like that’s coming from the government any time soon so I’m trying to channel my focus and my energy and my feelings into doing what I can as an individual. The proceeds from my single, ‘Invisible,’ go to YoungMinds of course but that’s in place and I want to do more. I want to do everything I can. So, this year, I decided to raise money for Mind (Charity Number: 219830) by swimming 5km. Because of my hEDS, I knew I wasn’t going to be able to swim more than a kilometre at a time without potentially aggravating my chronic fatigue and chronic pain so I planned to do the 5km over a series of nights, completing the 5km in time for World Mental Health Day on the 10th October. There’s a nagging voice in my head that keeps snarkily pointing out that I should’ve been doing this for years but I know logically that I couldn’t even have done it last year because of both my physical and mental health. So I’m trying not to beat myself up for not doing it sooner. I’m doing it now.
I really had no idea what to expect in terms of raising so I set it at £150. That seemed doable since most of my friends are still struggling financially post university and we are all in a cost of living crisis. While this also affects the more financially established people in my life, I knew that there were people who were more able to help me achieve this. That, I think, is a big part of why I didn’t set a super ambitious target; the cost of living crisis is hitting everyone hard (apart from the incredibly wealthy Tory politicians, it seems) so I felt that raising any money at all was an achievement; I was deeply appreciative of every donation, whatever the amount. I figured out the details and set up my JustGiving page:
“For World Mental Health Day 2023, I will be swimming 5km in aid of Mind (charity number: 219830), a charity that supports those struggling with their mental health. As a person with Ehlers-Danlos Syndrome who suffers from chronic pain and chronic fatigue, I will be swimming this distance over a week in order to avoid worsening these conditions. It has taken me over a year to reach this point, where I am physically fit and healthy enough to do this, and I want to celebrate this and honour World Mental Health Day by challenging myself with this swim and raising money to support a charity that helps those who are struggling with issues that I have struggled with myself.
I know that times are really tough and that we are all affected by the cost of living crisis but even a few pounds can make a difference. If you can’t afford to donate, please help me to reach more people by sharing this page on your social media.
Thank you for reading this post and for whatever help you can manage. I truly and deeply appreciate it.“
And then it was time to swim the thing!

SWIM 1
The first swim was at the longer, lane swimming pool that I go to, which meant swimming fifty lengths to achieve the first of the five kilometres. I had, in typical fashion, slipped off an uneven curb earlier in the day (right before my first ever sponsored 5k ever, of course); fortunately I was fine, if a little sore, because I wasn’t changing the plan for anything. I’d swum the distance a few times already and found it a challenge but a doable one; I expected the same for each of the five nights. But it was surprisingly smooth-going. I was tired at the end, my muscles a bit shaky, but I was excited and energised by it; I couldn’t wait to do the rest of them.
SWIM 2
For the second swim, I was in the smaller pool, the one that’s more suited to and where I usually do my hydrotherapy exercises. It’s short – only 8.5m – so the amount of times you have to turn in order to swim a kilometre can get a bit tedious but it’s a beautiful little pool. This kilometre was harder. Given that it was the second of two nights swimming a kilometre, I was tired before I started and my arm and leg were actually more painful than the night before, presumably because I hadn’t been able to rest them post fall. So it was a bit of a struggle but I made it! Two down, three to go!
SWIM 3
I had a night off and then I was swimming again, another kilometre in the small pool. Having had a break and some time to rest my sore arm and leg, I felt better and stronger in the face of the swim and, unsurprisingly, it was easier than both I’d done so far. That said, I was exhausted by the time I was done and fell asleep on the sofa when I got home. My body definitely isn’t used to this. But it was very exciting to have passed the halfway point! And I was at almost £500 with my fundraising when I hadn’t even expected to break £200!
SWIM 4
For the fourth of the five kilometres, I was back in the long pool. Despite having a few days off, this one felt really hard: it wasn’t that the lengths felt longer but more that my arms and legs were heavy and tired and it took more effort to pull myself through the water. I think I got tired faster too. But I managed it, even if only just in time before I had to get out of the pool. Four kilometres in a week! Even though I was exhausted with another kilometre to go, I still felt energised and excited about going to the pool. And so motivated to finish the 5k.
SWIM 5
Because I’m me and apparently really can’t go a week without falling over, tripping on something, or colliding with a door frame, I managed to trip in the street on my way back from the pool the night before (because I was so tired, I think). I twisted my ankle and landed on my knee and although I hadn’t done any serious damage – thank goodness – I did go into the last kilometre feeling sore and a little wobbly. But I was so excited to do it, both to complete the challenge and fulfil the promise I’d made to Mind and to all of the wonderful people who’d donated. I was so proud to be earning that money, the total having reached £500 that morning!

1km later and I’d done it! 5km! It felt so good. It hadn’t felt as hard as the night before either, maybe because I was back in the groove, maybe because I was so close to achieving the goal and was therefore more motivated and noticed my fatigue less. Whatever, it was done and I didn’t feel too exhausted to actually get out of the pool. The lifeguard was really nice about it when we realised we confused the time of our slot and even donated before we left!
By the end of the day, with the swim completed, the total donation sat at £510. I was very, very proud of that, having never thought I’d reach such a number. And I was really proud of myself: I’d done it. I’d completed the challenge I’d set for myself. I’d swum 5km when, just several months ago, I wouldn’t have been able to swim half that. It’s a big milestone in terms of my fitness.
It’s been a really positive experience, even if – at times – I was tired or sore or anxious that I wouldn’t raise the money. So much work has gone into the week, into these five kilometres; it’s taken so much time and effort to get physically healthy and fit enough (plus in a healthy enough mental state) to do this. I’m really, really proud of myself for getting to this point and I’m really, really proud of completing the 5k; I can’t think of a better way to celebrate all of that than by challenging myself with this swim and raising money to support a charity as important as Mind.

There is still time to donate – the page is here – but at the time of posting this blog, the total raised is £620. That is so incredible to me and I’m so moved by the generosity of human beings and their desire to support each other. Thank you so much to everyone who has donated and to those who weren’t able to but shared the link, helping this fundraiser to reach a wider audience. While I’m sure there are many, many things that this money can go towards, these are some of the ways that the money we’ve raised together will help people…

As I said, I’ve been struggling with awareness days like this one for the last several years, feeling powerless and frustrated. But this year has been different and that’s because of this fundraising challenge. Not only am I proud of completing the physical challenge and blowing the fundraising target out of the water (that pun was originally accidental but it’s too funny to me to take out), I feel like I’ve made a difference. It might be a small one in the grand scheme of things but it’ll be no small thing to the individual(s) Mind is able to help because of this donation. So, with that in mind, Happy World Health Awareness Day. We made a difference.
Category: chronic fatigue, chronic pain, event, exercise, family, heds, hydrotherapy, mental health Tagged: 5k, 5km, charity, charity fundraiser, charity swim, chronic illness, chronic pain, fundraiser, fundraising, institutional ableism, justgiving, mental health, mental health awareness, mental health charity, mental illness, mind, mind charity, pain, sponsored swim, swim, swimming, wmhd, wmhd 2023, world mental health day, world mental health day 2023
Posted on June 26, 2023
It’s been a long time since I did a Week In My Life post but I thought they’d be fun to revisit. I don’t really have typical weeks anymore – every single one looks different with all of the different things I’m doing and experiencing – but I thought that might add to what makes them interesting; the format remains the same but the contents will always be completely different. This was a super busy week because, on the Monday morning after it ended, I was flying out to Germany so I had to get a lot of stuff done; there could be no putting it off and my ADHD brain did not like that. So it was stressful and busy and chaotic but there were also some really cool, fun, joyful moments too. So it was an interesting one to record.
The week in this post started on Monday 22nd May and ended on Sunday 28th May.
MONDAY
I was up at eight thirty and pretty much straight out to the hairdressers to have my hair coloured in preparation for going to Germany (I’d had it cut the week before). I find it takes several days to settle, for the sharp lines to soften and the colours to blend together nicely. I get so used to seeing it faded (because it’s expensive to get redone – I often top it up out of a box but needed it to look particularly nice on this occasion so didn’t) that seeing it fresh and bold is shocking, in the best way. I love it; it looks amazing every time and I can’t believe that I ever considered doing something different with it (apart from wanting blue hair because who doesn’t). It makes me feel so much more confident; it makes me feel like me.
Back home, I got stuck into some admin work. It took a lot of effort because my brain really didn’t want to do it but I got the necessary emails sent, submitted my Amanda Tapping story for her livestream (which I wrote about in my last post in case you missed it), did some diary catch up, and worked on several upcoming blog posts. I feel like there is never any time to breathe anymore, like I’m always only just keeping up so there isn’t even a moment to stop and think before moving onto the next thing. It’s really stressing me out.
When I had a brief look at social media, Twitter specifically, because of it being Mental Health Awareness Week, all I saw were the usual vague platitudes, corporate statements that didn’t mean anything, and pictures of the royals going to various events. The whole thing infuriated me and I started ranting, tweet after tweet until the thread was barely coherent and I nearly posted it but then I stopped and thought about what I was doing. The thoughts were rushed and frustrated, it’s so easy be taken out of context when you have so few characters, and Twitter can be a pretty toxic place. So I saved the tweets and resolved to elaborate on the thoughts in a better medium, like this blog (which I did and it turned into this post.)
I spent the evening packing since I was going to London the next day and then went to bed relatively early for me, around midnight. But unfortunately, I couldn’t sleep, despite doing everything that usually helps (a routine I have long since refined); I couldn’t seem to relax, my whole body shaking. I was still awake at four, practically vibrating with tension even as I tried to relax enough to sleep. I’ve had sleep paralysis before and it wasn’t that so I don’t know what was going on; I just kept finding my jaw clenched, my hands in fists, and even my toes curled. It was hideous and exhausting.
TUESDAY
I struggled up at nine thirty, got myself showered and dressed, and settled on the sofa with my laptop. I had some more admin work to do, more emails to send, and so I worked through that list before taking a break and scrolling through social media for a little bit. Then I spent several hours working on blog posts and an academic paper about Taylor Swift’s songwriting that I had to submit before I left for Germany; the paper itself was already written but I had a list of edits to work on plus two re-recordings and a new album to integrate into the existing relevant parts of the paper. I don’t mean to be so cryptic but I don’t want to talk too much about the specifics of it until there’s more certainty surrounding the project; it still feels very up in the air, to me at least. But maybe that’s just because it’s the first time I’ve done anything like this.
Mid-afternoon, I had therapy. I don’t want to get too deeply into what we talked about; that is very personal after all. But we did talk about all of the things I had to do before leaving for Germany, as well as how I was going to handle the trip to Germany itself. Sometimes my therapist brings a friend’s dog with her, which is always a bonus. I love her and she loves me and we have some great cuddles, which are very good for balancing out some of the hard stuff we talk about. But no such luck that day (it’s fine though – it’s not like I go for the dog). We finished on time and I managed to get to the station in time to catch my train. It isn’t a long journey but I filled the time, working on blog stuff. I had to make every minute count with so much to do before the week ended and I headed off to Germany.
I got off the train at Victoria station to a very strange sight. I’d paused several feet beyond the barrier to rearrange some of the stuff in my hands and pockets and saw a man standing with a wheelchair and a dog. As I stood there, he encouraged the dog into the wheelchair and it jumped up, turning around and sitting down like it knew exactly what to do. And then, out of his pocket, this man pulled a lizard – a bearded dragon, maybe – and placed it on the dog’s back. Again, it was like both of these animals had done this a hundred times and knew exactly what they were supposed to do. And off they all went, the man pushing the two of them in the wheelchair. It was so surreal to witness. I got the rest of my stuff rearranged and headed for the tube station, fascinated that nobody else seemed to have found this a strange moment to be present for. But then it is London, I guess; everyone is very ‘stay in your lane.’ The whole situation was just so bizarre and I was very aware that I was probably watching something that I’d never see again.
Usually I stay with one of my parents when I do an overnight in London but she already had someone staying so there wasn’t room for me. I ended up staying with family friends – as did my Mum actually since she was was working in a school in London, starting early the next morning – which was really nice because I hadn’t seen them for ages. So it was really nice to catch up. We were all tired and had early starts so we didn’t last long (and had to create a schedule to get everyone in and out of the bathroom in order for everyone to leave on time, which I don’t think I’ve had to do since I was a teenager in secondary school). It took me a while to decompress and go to sleep but it was still quite early by my standards, thank goodness.
WEDNESDAY
I had to get up at half six to get ready, which is most definitely the earliest I’ve had to get up in years. I had a shower, got ready, had some breakfast, and headed for the underground. An organisation I’m a part of, The F List, which supports female and gender minority researchers in music research, particularly research that supports gender equality in music and music research was holding an event, The F List Gender in Music 2nd Annual Research Hub Conference, at my university and I was keen to learn as much as possible – my brain finds learning new things positively addictive, something that I don’t think is uncommon for people with ADHD – even if I was a bit nervous about how long I could stay focussed for. But fortunately that wasn’t too bad and they’d made accommodations for anyone who needed them, although they were very neurodivergent sounding accommodations (as it turned out, there were so many neurodivergent people there that I was starting to wonder if we were all members of the club). As they said on their website: “The F-List Research Hub aims to expand and better introduce the existing feminist and interdisciplinary collective of researchers, dedicated to evidence-led activism which aims to create an environment in which women and gender expansive people in the music industries will be able to more successfully start and sustain their music careers for longer.” And the theme was ‘identity’: “Identity is a central theme in feminist research, which sees ‘who we are’ intimately entangled with ‘what we research.’ The definition above is deliberately broad and (we hope) inclusive to all who seek to research gender issues in music.“
They ended up asking me to write the blog post for the event, which was really exciting. I would be taking notes all day anyway so I just added some extra notes about how the event worked, how everyone socialised, how things felt, in order to sum up the day accurately. We came up with a plan for what the blog would focus on and how long it would be and I played around with it in my head as I listened to the speeches and presentations.
Professor Sophie Daniels, one of the directors of The F List, the head of the songwriting program at ICMP, and my tutor for years, gave the keynote speech, which was really cool. This is what I wrote for the F-List blog because I’m not sure I could say it better: “After a bit of mingling, the day began with the Keynote speech from Professor Sophie Daniels, where she discussed, amongst other things, her career in the music industry, her founding of the songwriting program at ICMP, her artist project, Liberty’s Mother, and it’s associated advocacy work, as well as her research into why we write songs. I first met Sophie in 2014 and she was my teacher on and off for seven years while I studied at ICMP; so while I knew much of what she was sharing, it was really insightful to hear it presented this way, through the lens of feminism, particularly in the music industry and music education. Sophie has always inspired and supported me – as a songwriter, an artist, a researcher, a mental health and Autism advocate, and, ultimately, as a person – and so it was very special to watch her give the Keynote speech.” And it was: it was really special. I will never get tired of hearing ‘I Can Love You From Here.’ It makes my heart ache now just as it did when I first heard it eight years ago.
It was a lot of information but the presentations were short, about fifteen minutes each, which was the perfect length for my ADHD brain and each one was really interesting; I don’t know if it’s the neurodivergent brain but learning new things is always fun for me. The topics ranged from Trans and Non-binary inclusion in the music industry to support for those with ADHD in the music industry to exploring black feminism in the music industry to investigating the interwar generation of women composers at the Royal College of Music, as well as a conversation with the CEO of the Independent Society of Musicians. At one point, she talked about how badly the arts are treated and how they’re so important because they give life meaning: “They lie at the heart of what it means to be a human being.”
Oh, and I greatly enjoyed being introduced to this song…
I found all of it interesting – I really did – (although I did need some time in the quiet space because it was a lot of information and a lot of noise) but I think I was most engaged by the presentations on support for neurodivergent individuals in the music industry, by the one on the emerging trends in the careers of women in the music industry, and the one investigating the interwar generation of women composers at the Royal College of Music. I did wonder whether my Granny would actually be part of that group but when I worked it out, I realised that she wouldn’t have enrolled until after the end of the period of study. It would’ve been so bizarre if her name had appeared in that research.
When the presentations finished, we congregated in the attached cafe to socialise and network, which turned into a commemoration Tina Turner dance party, which was a fun if bizarre way to end the day. It was hard to leave: it was such a nice group of people plus I was dreading the long journey home. But it was a good day; I learned a lot, I fell into some really cool opportunities, and spent time with friends, old and new.
I did eventually make my way to the station and catch a train home. My Mum very kindly picked me up – I was beyond exhausted from so much standing and socialising and focussing all day – and when I got home, I went straight to bed. I had a look at social media for a while, decompressing from the outside world, before going to sleep around one, which isn’t bad for me at the moment.
One of the opportunities that came out of the day was the chance to do the write up – a blog post – of the day. You can find that here.
THURSDAY
I spent most of Thursday at my laptop, working on my Taylor Swift paper. I was really on a roll; I felt like the Kermit the Frog at a typewriter meme. I had already been writing and making progress with it but I hadn’t really managed to get on a roll until that morning and having finally hit my stride, I was having a blast. I was expanding on ideas already present in the paper and building in new ones; the only problem was that I was just increasing the word count and the task of cutting it down was looming. But I was enjoying the fun parts while they lasted and I vaguely resented being interrupted when I had to go out.
It’s been a really long time since I had my last appointment with my psychiatrist, although we’ve stayed in touch. He was in a new office – with a gorgeous view of both the Downs and the sea – and it was much nicer than the last one, which had felt incredibly medical and sterile. I like this one a lot more. And, in the waiting room, there was a painting that I instantly fell in love with: a seascape by a local artist called Sara Hill. I would love to own something like this, to get to look at it everyday. It was completely gorgeous and I found it very soothing to look at, which I suppose is fitting for a psychiatric office.

The appointment went well. My psychiatrist and I talked through my experience with the Phenelzine and what has improved and what’s still a struggle. I’d wanted to discuss increasing the dosage, which we did. It had been too much last time – I felt very overstimulated all of the time – but I thought that, given that I’ve been trying to climb out of a deeper, darker place, a higher dose might be what I needed to make it that extra distance. We talked through that idea – and how much I want to write more again, which I just haven’t been able to – and he agreed. And, proving how well he knows me after all of this time, he suggested we judge the effectiveness by how much I’m writing. Sounds good to me.
Back home, I tried to re-harness my previous focus on my paper and while it wasn’t quite as effective, I did manage to get another good chunk of work done. I even had some time to do a bit of blog writing since I doubted I’d have much time to write while in Germany, I needed to have something prepared for the Saturday at the end of the trip. By the time I went to bed, I was completely exhausted and my brain felt vaguely like I’d put it in the microwave for too long.
FRIDAY
Despite going to bed so late, I was able to drag myself up early for a very important Zoom call. I don’t want to talk about who it was with and what it was about yet, not until things are more certain. But it was a very exciting call and, all being well, some awesome life things will come out of it. That’s all I’ll say for now.
I didn’t have long until my next Zoom call so I spent about ninety minutes or so working on blog stuff. I just needed some decompression time and I find blog post writing very soothing for some reason; I think it just allows my brain to turn over an idea, over and over and over until it makes sense, and getting the words into a satisfying rhythm.
I had a really nice Zoom call with one of my best friends and we ended up talking for about two hours. We can talk about anything, from movies to the really big stuff in our lives, and we can talk for days without needing a break; we can just go off on these tangents that go on for hours and then we eventually backtrack to our original conversation topic, only to go off on another tangent. We have a lot in common and we have so much fun together. At one point, we tried to figure out how we became friends – having met on the MA – but we couldn’t: it seems that we both thought we were already friends and just skipped the whole ‘becoming friends’ part of the friendship, which is actually pretty on brand for us now that we are really good friends. I have no idea if that makes any sense but that’s how it is.
We hung up so that I could get ready and go to therapy. Again, I don’t really want to talk in detail about what we discussed but, in general, we talked about going to Germany, the things I was anxious about, and how I might manage them. I wasn’t feeling too stressed (which turned out to be ridiculous because I found the whole trip incredibly stressful) so it wasn’t too bad.
When I came out of therapy and checked my phone, I saw that Taylor Swift had made an announcement, the release of Midnights (The Late Night Edition) and the new song, ‘You’re Losing Me.’ Someone had already shared it online. Had the song been released somewhere where I could listen to it legally where Taylor would get paid for my purchase or stream, I absolutely would’ve done so – I’ve always felt very passionate about that – but since it’s only available on a CD one can buy at tour dates, I don’t feel bad listening to it online. And what a song it is; it immediately joined my 2023 in Songs post because I love it so much, especially the lyrics. I’ve talked about it more there (I’ll add the link when that post goes up in December) but the ongoing medical imagery is heartbreaking, the way the bridge just keeps building is one of my favourite Taylor techniques, and the imagery in the lyrics all had me absolutely hooked (I particularly love “Remember lookin’ at this room, we loved it ’cause of the light / Now, I just sit in the dark and wonder if it’s time,” “And I wouldn’t marry me either / A pathological people pleaser / Who only wanted you to see her,” and “Do something, babe, say something / Lose something, babe, risk something / Choose something, babe, I got nothing / To believe / Unless you’re choosin’ me / You’re losin’ me”). It’s a gorgeous, gorgeous song and weeks later, I’m still listening to it over and over. So that was a moment to have missed because of therapy.
Back home, I went back to working on my paper. One of my parents stopped in for dinner and we had a good catch up before I got back to work. Then I had some decompression time, writing more of my Mental Health Awareness Week blog post before going to bed.
SATURDAY
I spent the morning working on my paper before catching a train to London. I used the trip to keep writing and then navigated the tube system to get to the Thin Air exhibition at The Beams near London City Airport. And it was absolutely stunning…
The exhibition was made up of several different rooms, designed by different artists or artistic collaborations. I didn’t like all of them but of the ones I liked, I absolutely loved:
It was really cool and I’m really glad we got to see it before it closed (while we were in Germany). I would’ve stayed longer if I could’ve but I still had so much to do and they do encourage you to keep moving through the rooms.
Then it was back on the train home and even though I was exhausted, I continued working on the paper and on the upcoming blog posts. I also managed to reply to some of the messages I’d been unintentionally procrastinating over, accidentally pushing them back in favour of getting more work done. So that felt like an achievement too. I was pretty much getting things done out of sheer willpower – something that absolutely does not always work but did this time for some reason – which I was very relieved by. Of course, so pleased to be on a successful streak and unwilling to break it, I ended up going to bed much too late.
SUNDAY
It was a very goal focussed day. I managed to get my blog post of the week – So That Was #MentalHealthAwarenessWeek… – done and published relatively early in the day and then I moved on to the piece about The F List conference. I had all of my notes from the actual day and I’d been making notes since then: thoughts that felt important to include, anecdotes that would make it more personal, and so on. I got that done mid afternoon, I think, and sent it off (they really liked it and it was published and shared a few days later).
Afternoon and evening, I packed for Germany. I was going to be there for a week but I am a terrible packer – I just find it really hard. I wonder if that’s an ADHD thing, given that it’s an organisation and planning based skill. Interesting; I’d never thought of that. I don’t know but possibly. I’ll have to do some research. Anyway, as I said, I’m a really bad packer (I once packed for five weeks in Australia two hours before I left for the airport – the dread and procrastination were so bad) so I struggled through that as a task. Eventually I got that done, with probably much more than I’d need.
I spent the rest of the evening trying to finish my Taylor paper. This edit was essentially finished – apart from one section, which I couldn’t work on until I got some of the literature they’d promised to send me (and now have sent me) – but it was way over the word limit and, as hard as I tried, I couldn’t get it down without cutting out significant parts of whatever point I was making or the evidence for it. But I kept trying and trying and trying, as well as tidying the whole thing up. In the end, around two in the morning, I decided that I would send it as it was and ask the organisers – all of them accomplished academics – for their advice on the word count. I’ve never done this before but they have; hopefully they can help me get it down to the required length without compromising the content on the next edit. So I stopped at two and went to bed, my laptop on the bedside table so that I could send it first thing in the morning.
It was a very anxious week: there was the pressure of trying to get everything done, the unknowns of the conference, and the anxieties around going to Germany. It was hard. But it’s also really nice to be productive again, to be working and producing, even if my mental health and neurodivergence do make that a struggle sometimes; over the last couple of years, I’ve been so paralysed by my mental health problems – by my depression and anxiety specifically – that I’ve barely been able to do anything. So just to do things at all, let alone the amount of things I’ve been doing, is kind of amazing to me.
Category: adhd, anxiety, autism, body image, book, depression, emotions, family, medication, mental health, music, research, sleep, special interests, therapy, treatment, university, writing Tagged: a week in my life, academia, academic, academic research, adhd, amanda tapping, art, art exhibition, art installation, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, blog, blog writing, body image, conference, dosage, dose increase, exhibition, friend, friends, friendship, gender in music, germany, hair, hair colour, hair dye, hairdressers, immersive art, insomnia, installation, liberty's mother, light art, light installation, livestream, london, medication, medication increase, mental health, mental health awareness, mental health awareness campaign, mental health awareness week, mental health awareness week 2023, mhaw, mhaw 2023, midnights, midnights 3am version, midnights album, midnights album late night album, neurodivergence, neurodivergent, neurodiverse, neurodiversity, packing, pain, phenelzine, psychiatrist, psychiatry, rerecording, rerecordings, research, research conference, research paper, sleep, social media, songwriting, sophie alagna, sophie daniels, sound art, taylor swift, tension, the beams, the f list, therapy, thin air, travel, travelling, week in my life, wiml, writing, you're losing me, zoom
Posted on May 28, 2023
Yes, I’m aware the title is fairly obvious. Mental Health Awareness Week 2023 is over. But I’m inclined to wonder how many of the people, organisations, companies etc are still talking about mental health now that the week is over. Maybe this is cynical but I’d guess it isn’t nearly as many as were talking about it during the week. And that is part of why I wanted to post about it this week rather than last week (shout out to my therapist for talking this out with me).
During Mental Health Awareness Week, I was scrolling through the #MentalHealthAwarenessWeek tag on Twitter and found myself just seething at what I was seeing: the majority of posts were either very basic information about mental health (and I mean very basic), vague platitudes (like ‘it’s okay not to be okay’), and pictures of various royals attending various events. The theme of the week was anxiety but I didn’t even know that until I looked at the Mental Health Foundation website afterwards. And looking at all of these posts, I couldn’t help but think, ‘How is any of this helpful in any way?’
I started ranting and the Twitter thread got longer and longer but, before I posted it, I thought that maybe this blog was a better place for those thoughts. The audience is definitely smaller but Twitter is so full of potential pitfalls (we all know how toxic it can be) and it’s so easy to be taken out of context when you have such little space to try and express your thoughts. So I took a breath, didn’t click post, and then copy and pasted all of those thoughts over here.
My first thought when I checked Twitter and realised that it was #MentalHealthAwarenessWeek (I almost always have family stuff during that week, which completely absorbs my focus, and then I’m always more than a bit thrown when I realise) was “Ah yes, another year, another #MentalHealthAwarenessWeek where organisations and corporations pretend to care about mental health and mental illness by posting the most basic information and platitudes before going back to pretending it doesn’t exist. I’m so glad you guys can take the rest of the year off now because those of us struggling sure as hell can’t.” Again, that’s a very cynical view – I know that there are many people who do care and we don’t need to post about things on social media to prove that we are passionate about them – but I find it so deeply frustrating to watch people (and worse, an organisation or company) act as though they care deeply just because it’s the annual awareness week and it makes them look good to post about it. Because, as I said, many of us – myself included – don’t have the luxury of not caring about mental health and mental illness because we are struggling with it every day. Every week is Mental Health Awareness Week. I have personally spent over ten years living and struggling with the symptoms of several mental health problems, being traumatised by systems that are supposed to be helping, supporting, and protecting me (including the current government – HA); I do not trust them to care for me or even about me – I doubt I ever will – and that is NOT OKAY. That is not how healthcare and mental health support are supposed to work. I am very privileged – and feel extremely grateful – to be able to find care independently, but so many people are not in this position, resulting in many, many people not receiving the care and support that they need, something that is, again, NOT OKAY.
But back to social media and awareness days (as much as I could talk about it, this is not a post about how the systems in place aren’t supporting those of us struggling with mental health problems). It can be very upsetting to see massive, impersonal corporations tweet about ‘reaching out’ or ‘[listing] things to be grateful for’ and it feels very out of touch and performative and just pretty offensive. This is not what Mental Health Awareness Week is about, what it is for. At least it shouldn’t be. Personally I don’t think awareness days and awareness weeks are particularly helpful and, at worst, potentially problematic (for example, it gives people an excuse not to engage with these issues because they feel like they’ve done their bit during the one awareness day or week a year) but, if we’re going to have them, they should be an opportunity to share resources (ones that are actually helpful, not ones with advice we’ve all heard a thousand times), to have real discussions about the perceptions we have about the relevant issue and how said issue is handled by the associated systems (or not handled), to elevate and celebrate the activists trying to raise awareness, and so on. They should not be an opportunity for brands to seem socially engaged or for shops to make money from barely relevant and often obnoxious merchandise. These days could be so much more (this is a really interesting article on raising awareness, why certain campaigns fail, and how we can make them more effective); we could make them so much more.
As I think we’ve established, I am pretty cynical about all of this and do believe that many people will completely forget about mental health as a topic now that the week is over. But while I do think that there are many people who talked or posted about it just because it was trending on social media, I also know with absolute certainty that there will have been many people who didn’t comment and don’t comment for completely valid reasons: we all have our own battles to fight and we, as human beings, can’t fully commit ourselves to every cause (compassion fatigue is a very real thing). And then, of course, there are the awesome people who continue to share their stories, to speak out, to try and push the world towards change – doing everything from making art about it to campaigning for better systems to creating more representation in the media to supporting individuals with mental health problems, etc – regardless of what week it is. I have great respect for everyone doing this (and for all of these important causes but I’m trying really hard not to get derailed within this pretty specific blog post) and I’m so inspired to keep being loud about my experiences with mental health and doing everything I can to make a better, safer world for us.
As I said, I often forget that Mental Health Awareness Week is happening – the 16th May is the anniversary of my Dad’s death and it just takes up a lot of time and energy and emotion, as you can probably imagine – and I have a lot of big, tangled up thoughts about awareness days and weeks in general. The point that I guess I’m trying to make here is that I don’t like the (almost) performative activism it accidentally encourages and rarely helps the people that it’s actually supposed to. And I think we can do them better. I know we can. It’s just a case of figuring out how and making it happen, which I do appreciate is far easier said than done. But then, what isn’t? (Other than silence and we really don’t want that either.)
Category: about me, anxiety, death, depression, emotions, family, mental health, response, therapy Tagged: activism, advocacy, avodcact, awareness, awareness campaign, awareness day, awareness week, benefits, compassion fatigue, conservatives, grief, mental health, mental health activism, mental health advocacy, mental health awareness, mental health awareness week, mental health awareness week 2023, mental health foundation, mental illness, mhaw, platitudes, royal family, social media, support, the conservative party, therapist, therapy, tories

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.
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.
Finding Hope