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 The problem is that we’re stuck with outdated medical education, out of touch care providers, no support services, and no money to fix any of it.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 August 27, 2023
TW: Mentions of ableism, severe depression, suicidal thoughts and ideation.
Us international Taylor Swift fans have been waiting for The ERAS Tour to come and visit us for months and finally, we have dates! (Through some bizarre twist of fate, the announcement, the registration, the extra dates announcement, and the opening of resale tickets all occurred while I was at therapy, so I don’t think it would surprise anyone to learn that I rescheduled the sessions that were booked for the days of the actual ticket sales – thank god for my very understanding therapist).
So the tour is coming – possibly the most exciting event of next year – but before I could be excited about that, the ticket sales had to be navigated. And given how horrific the US sale had been, I was – at the very least – very apprehensive. I hoped that, after the previous fiascos, this sale would be smoother but, having witnessed the anxiety and misery and disappointment, I couldn’t help but worry that this sale would be just as bad, with the added hurdle of trying to get accessible seating.
Having pre-ordered the Midnights album during the period in which it granted you a code for tour dates, I had access to the ticket sales a week earlier than the ticket sales for which you had to register. That was definitely helpful, in some ways at least. In the week leading up to this first sale, my Mum and I spoke to the Wembley accessibility people several times, trying to get the most accurate information about getting tickets through them. My Mum had to actually make the calls since making a phone call is something that is a real struggle for me as an autistic person, especially when the phone call has high stakes or I have anxiety about it (I can handle other forms of communication – I just can’t gather enough information from just a voice to keep up a conversation in real time and the anxiety of screwing up just makes the processing worse and the whole thing snowballs until I become non-verbal or descend into a meltdown). So Mum made the phone calls and we tried to get the clearest picture we could, but the information changed with every call and, on the Friday (with the tickets going on sale on Monday morning), they still weren’t sure of anything. They were really only certain of one thing: they were very, very aware of how high the demand was, part of the reason why they were so reluctant to commit to any of the information they did have. It was very stressful and I spent the weekend consumed with anxiety over whether or not I would be able to get tickets to even one show, having hoped to go a couple of times with different friends and family members. The dread I felt at the thought of not getting to go was paralysing.
Most people don’t seem to understand the intensity of my emotions. Technically, it could be part of being neurodivergent or mentally ill but it’s always just felt like part of me: it’s me, hi, I feel everything at 500%, it’s me. I feel every emotion with my whole body; it’s just always been that way. And people have always been weird about it (especially when it comes to loving Taylor actually – I’ve been mocked and harassed for years for being a fan of hers, often for reasons that completely baffle me). It hurts – and that hurt is very intense too – but I’d always rather love things, regardless of what people say. Taylor and her music (and seeing her live) are and always have been so important to me, getting me through hard times and bringing me such life affirming joy; as hard as it can be, it doesn’t surprise me that the thought of not getting to see her live after waiting so long feels like a lifeline being cut.
Monday morning, I woke up so anxious that I couldn’t eat. I couldn’t do anything. When the time came, when the online queue and phone lines ‘opened,’ Mum rang the accessibility number. It rang and rang until it went through to an automated message before hanging up. We tried again. And again and again and again. We kept getting the same message and we were still calling when the queue moved from the first of the Wembley shows in June to the first of the Wembley shows in August in the early afternoon. We were still calling as the clock inched towards five and the closing of the phone lines. I’d been sitting with Mum, unable to do anything and on the edge of the meltdown all day. I was exhausted, in pain, and swinging between misery and rage, in tears over how awful the experience was. It was (and still is) so desperately distressing that it seemed literally impossible to get a ticket for accessible seating, to access the concerts as a disabled person. It just felt – and feels – like yet another part of the world telling us that we’re not worth the effort, that we don’t matter as much as everyone else. It’s a deeply hopeless feeling. And as if the situation wasn’t hard enough on its own, I’ve been struggling with suicidal thoughts and impulses for a while now and between the dwindling possibility of getting accessible tickets and the crushing display of ableism, those thoughts were only getting louder and more difficult to block out.
Tuesday was more of the same, just with an awful day and awful night’s sleep under my belt. Mum and I were glued to the sofa again, calling over and over and over. Morning turned into afternoon, another show disappearing. Wembley Stadium had tweeted a response to the criticism on social media: “Due to unprecedented demand waiting time for Taylor Swift | The Eras Tour Disabled Access is longer than normal. For those unable to wait on the phone we have a call-back system.” Seeing that filled me with the urge to throw my phone across the room: when we’d spoken to them, the ‘unprecedented demand’ was the only thing they had known about. I wanted to scream.
The night before, a friend had suggested looking at Twitter to see if other disabled fans had posted about having a similar experience. I didn’t remember her suggestion until the afternoon but once I did, I went searching and found my experience repeated over and over. On one hand, it was reassuring because I wasn’t alone but on the other, here was this huge number of people who weren’t able to get tickets because Wembley’s accessibility department wasn’t doing its job. I spent the afternoon tweeting back and forth with this group of people: trying to find a better way, sharing different phone numbers that different people had had success with, updating each other on our progress, sharing the successes and the miseries and frustrations. One fan, Faith Martin (she wrote a great piece for Metro about what the experience was like was disabled fans), spent an amazing amount of time trying to help people get tickets, long after she got tickets for herself; I really appreciated her support and encouragement. (I’m sure there were other fans doing this, helping other fans for other UK venues but Faith is the person I saw doing this, the person who helped me.) Having that little community in such a fraught time was comforting; I’ve never had anything like that before.
Eventually, just before the lines closed for the day, we got through and were finally, finally able to get tickets. When my Mum hung up the phone and triumphantly announced that we had tickets, I collapsed back onto the sofa and burst into tears. I was overwhelmingly relieved but also totally overwhelmed by the exhaustion and anxiety making my hands shake, by the excruciating pain in my limbs, back, neck, and skull. But most of all, I was just completely overwhelmed by how hurt I felt by the ableism of the process (especially compared to the ease of the online general ticket sale), by how little my very existence meant to them even though I was paying them for the space I would be inhabiting. God, you know it’s bad when you’re paying to take up space and still no one cares because of the ‘inconvenience’ you present. I was pleased – of course, I was – but all the other big emotions were drowning it out. I knew I’d be thrilled later on, once I’d recovered from the unbelievable stress of those two days.
And it’s true. It took a couple of weeks to fully return to my day-to-day state but now that I have, I am really, really excited. But having said that – and I know I’ll say it a lot over the next year – I still feel hurt by how Wembley handled it all, how they treated their disabled patrons. I’m hurt and I’m angry and if there was anything I could do that would affect any change, that would be more than me simply shouting into the void, then I’d do it. Without a second thought. But if there is, I have no idea what it would be. So here I am, sharing my experience about, if only to remind people that this sort of thing – and worse, of course, much, much worse – happens every day. Even the processes set up supposedly to help us are failing us, and worse, hurting us.
I’ll leave you with what I tweeted after I got my tickets: “I knew that getting #ErasTour tickets would be hard but I didn’t expect the level of ableism. By making it so much harder for us, they’re essentially telling us that we aren’t as important as everyone else, that we don’t matter as much, and that was deeply, deeply upsetting.”
And here are some of the articles that have been written about this, including the experiences of several disabled fans. (Note: please don’t read the comments sections of these articles because the dismissive, ableist bile coming from people – most of whom are totally missing the point – is honestly painful and there is no reason to subject yourself to that if you don’t have to.)
Category: about me, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, family, heds, meltdowns, mental health, music, special interests, suicide Tagged: ableism, ableist, accessibility, accessible seating, anxiety, asc, asd, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, bullying, carer, carer's ticket, chronic fatigue, chronic fatigue syndrome, chronic pain, companion ticket, concert, depression, disability, disabled, disabled access, eds, ehlers danlos syndrome, emotional rollercoaster, enjoyment, eras tour, eras tour 2024, eras tour london, exhaustion, fan, fans, fatigue, fibromyalgia, fun, heds, hypermobile ehlers danlos syndrome, institutional ableism, joy, live music, mental illness, mum, music, pain, phone calls, recovery, rest, safety, special interest, stress, suicidal ideation, suicidal thoughts, swifties, taylor swift, tension, therapy, ticket, ticket sales, tickets, twitter, wembley, wembley stadium

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