Posted on January 1, 2026
TW: pet loss, pet death, depression.
I had hoped to get this up on Christmas Eve – like I used to – but given everything that’s been going on with my mental and physical health and the resulting fatigue, I’m not writing as quickly or as effortlessly as I have done in the past. But fast or slow, writing down my thoughts helps me to reflect and, considering how extreme the highs and lows of this year have been, some reflection – especially on the good things in my life – has helped me to feel more grounded as the year ends.
MY MUM – I’m always grateful for my Mum but I couldn’t have imagined the ups and downs of this year if I’d tried and I absolutely couldn’t have gotten through them without her. Between Daisy (my Autism Assistance Dog) moving in and getting settled, the difficulties and stress surrounding releasing new music, music and conference commitments, chronic pain and illness flare ups, a pinched nerve, a hospital visit, and a debilitating mystery illness (which, thankfully, has now been demystified and I’m starting to recover from), she has been an anchor, a touchstone, and a source of endless support. And considering the busy year she’s had, I’m so beyond grateful that I don’t know how to fully express it. I just know that there’s no way I could’ve survived this year without her.
MY PARENTS – With everything going on this year, I’m so grateful to have had the support and encouragement of my parents. Everyone’s had a lot to deal with – it’s certainly not been the easiest twelve months – but they’ve still been there for celebration and every challenge that this year has brought. They’ve been so supportive of everything I’ve taken on this year – and not just mine: they’ve been champions of my friends and their projects too, which I couldn’t love them more for.
THE TIME I HAD WITH LUCY – I still feel so deeply sad and the house feels so lonely without Lucy but I would never give up the time I had with Lucy; I will always be grateful for every moment I had with her, even at the end when it was so distressing – for all of us. She was with me through so much hard stuff, through so much growing up, and coming home to her was always so comforting. She was so special – so sweet and affectionate and sensitive – and she’ll always have a special place in my heart; I’ll always love her more than I can properly explain. Nothing I say feels like it’s enough. I miss her more than I know what to do with and I still feel more than a bit lost and untethered without her at the centre of the house.

THE FAMILY OF CATS – Between the arrival of Daisy early in the year, the loss of Lucy, my health issues, and the summer months when they’re almost entirely in the garden, home has felt very much in flux and I haven’t seen as much of my little family of cats as I would’ve liked and that’s been really hard. It was also incredibly scary to find out that Sweep, one of the youngest generation, suddenly needed a really big surgery, especially so soon after Lucy had had to be put to sleep. But fortunately, it went really well and she recovered beautifully, if impatiently. Things are getting better: they’ve migrated back inside with the colder weather and they’re slowly becoming braver – or at least less likely to run – around Daisy. It’s not that she’s a danger to them in any way, she’s just deeply enthusiastic and bouncy, the unpredictability of which they are not fans of (plus she must seem huge to them, while Izzy has always been even smaller than they are). They’re getting used to her and she’s getting better about not bounding up to them every time she sees them. It’s been a big change for everyone and I’m honestly just so grateful that, even with Daisy’s arrival, they’ve never doubted where their home is. I’m so, so grateful for the time I have had with each of them this year – I don’t take a second of it for granted – and I’m hopeful that things will only improve and become more stable going forward.
IZZY – I’m so grateful to have this fluffy, little sock thief in my life. She’s a constant source of love and joy and hilarity. If she could, she’d spend every hour of the day in my lap and I can’t say I’d complain; she spends almost all day curled up against me on the sofa and then all night curled up against me on my bed. She’s so adorable, so sensitive and snuggly, and she’s so funny and playful. She has struggled a bit since Daisy moved in: she doesn’t like having to share me. She gets jealous of how Daisy supports me and tries to take over, tries to prove that she can do it just as well as Daisy can and, to her, Daisy is big and enthusiastic and unpredictable (and Izzy’s face is right at the height of Daisy’s furiously wagging tail, which has caused more than a few incidents between them). They’re getting there and, thankfully, Daisy is very patient with her; I couldn’t bear it if they were just fundamentally incompatible. My relationship with Izzy is so deeply special, both because of how it began and what it’s grown into, and she’s a constant comforting presence that I’m beyond grateful for.
DAISY, MY AUTISM ASSISTANCE DOG – At the beginning of the year, Daisy officially moved in and, a few months later, she was fully qualified as my Autism Assistance Dog. I’ve posted about almost all of the training process but I really need to write something about what it’s been like since she was qualified; I don’t think this post is the place to reflect on all of that because I have so many thoughts on it but this post would’ve been incomplete without her. It’s safe to say that it’s been a massive change and, as someone who’s not very good at change, it has been a hard year with a lot of anxiety. It takes time, after all, for any dog to settle into a new home, as does getting an Assistance Dog used to more and more situations and environments. She’s been doing so well and I don’t think I’ve been doing too badly either but it’s been slow going, especially as it’s been complicated by a chronic pain flare up, a pinched nerve, and months of stomach issues. So we haven’t done as much as I would’ve liked but I’m really proud of everything we’ve managed so far. Her relationships with Izzy and with the cats are still developing and their interactions don’t always go smoothly but they have and are making progress. It’s easy to spiral about them never truly getting on but I have to trust the progress they’ve made so far and that they can make more. She’s an amazing dog: sweet, smart, eager to please, always up to play or snuggle… She has such a gorgeous face and she gets so excited whenever I pick up her jacket: she’s so excited to do her job, which is just adorable and always makes me feel calmer about going out with her. It’s a long process, getting confident working as a team, but every step has been in the right direction and I’m really grateful for that. I’m also really grateful for the ongoing support from Autism Dogs. I wouldn’t have Daisy at all without them, of course, but their support this year – from accommodating me during the the final stages of Daisy’s training to the regular check ins – has been amazing and so appreciated. It’s been a huge undertaking, especially as a chronically ill and disabled person, but they’ve been so helpful and so encouraging. I’m not sure we could’ve done this without their consistent support.
(Left: Izzy // Right: Daisy, my Autism Assistance Dog)
MY THERAPIST – Having abandoned talk therapy and started somatic therapy for trauma release in 2024, this was the year that I really committed everything to it and although I’m not sure I can fully explain it, I can say that it has had a huge impact on my life. Without a doubt. I learned a lot in talk therapy but I think it can only do so much when it comes to neurodivergence and trauma (although that’s just my opinion based on my experience) and somatic therapy takes a very different approach. I’ve been working with my therapist on learning to regulate my nervous system and helping my brain and body to reconnect so that my brain is able to recognise the trauma that my body is holding onto and then strengthening it so that I can go on to process that trauma as my brain and body feel able to. For a long time, I’ve struggled to fully feel my feelings, like I can only feel so much before they get shut down and, over the last six months, that’s started to change, which is both amazing and kind of terrifying. There is a reason we shut down these feelings after all. But my therapist is brilliant. Right from the beginning, we’ve gotten along really well and I so appreciate how she’s adopted my special interests to help me make sense of aspects of somatic therapy and how to get the most out of it; she always meets me where I am and I’ve never felt alone in the process. Because somatic therapy focusses much more heavily on feeling (while talk therapy – in my experience, at least – focusses much more on thinking and reasoning), I feel like I often go into it very much on trust: I might not fully understand or feel whatever it is we’re working on in that moment or in that session but I trust my therapist and I trust her confidence in the process. It’s hard to define the progress I’ve made – trauma and safety and emotions aren’t easily measurable – but I know it’s there. I’m learning a lot and my body’s learning a lot and I know that, in time, I’ll see the proof of all of this learning.
MY FIRST HYDROTHERAPY POOL AND FINALLY GETTING BACK TO THE POOL – Early in the year, the gorgeous pool that I’ve been using to do my hydrotherapy since 2021 closed, much to my distress. Not only did it fit all of my needs and allow me to do my exercises without an audience, it was an important fixture when my mental health was particularly bad (from late 2021 to late 2022). I was very attached. I’m so grateful for the time I had there: I needed a safe space, physically and emotionally, to start building my strength back up and I couldn’t have asked for anywhere better. Finding a new pool has been really difficult but I have recently started going to a new one; it’s not the same but it has different advantages and it does allow me to get back to working in the pool, which I am very grateful for. The transition is hard but I’ve never been particularly good at change. It will just take time; it always does.
THE TATTOOS I GOT THIS YEAR – Spending less time in the pool meant that getting more tattoos wasn’t as logistically complicated as it had been previously and over the last twelve months, I’ve managed to get several new ones, including my tangle for the ten year anniversary of my Autism diagnosis and a tribute to my beloved Lucy. I had hoped to get more but with four months of the year getting swallowed up by a pinched nerve and a mystery illness, just getting out of the house has been a challenge, let alone going to a tattoo studio and sitting through a session (having said that, I do actually find being tattooed more relaxing than painful – so far at least). I’m pretty sure they weren’t necessarily the ones I thought I’d be getting when I imagined this year but I’m certainly not complaining! I love them all and I’m looking forward to getting more whenever the opportunity presents itself.
(Left: Two dragons by @valeries.tattoo // Right: Tangle by @gaiahart)
POETRY ORCHARD – I touched on this in last year’s Grateful post but, at the beginning of 2024, I joined an online poetry community called Poetry Orchard and it was, without doubt, one of the best decisions I’ve ever made. I’ve written so much poetry that I’m so proud of since I started going to their workshops, which are always fun and cathartic and inspiring; they’re always a highlight in my week. And I’ve met so many amazing people in this community: they’re all so lovely and thoughtful and such brilliant writers. There’s not one among them that shouldn’t be a published poet. We have the most interesting, moving discussions and I feel so seen and so understood (there’s a lot of overlapping experiences with mental health, neurodivergence, disability, chronic illness, and so on). I feel so lucky to have found this space and the friendships that have grown from it are so special to me.
MY FRIENDS – I’m so, so grateful for my friends, from the steadiness of my oldest friendships to the blossoming of the newer ones. Between working with Daisy and releasing new music in the first half of the year and my chronic pain and illness during the second half, I haven’t seen nearly enough of them but they’ve still been so supportive of me, of my music, as I’ve struggled with my health stuff… I feel so lucky to have such wonderful, kind, creative, and passionate people in my life; I’m inspired by them everyday and it’s an honour to play even the tiniest role in the incredible work they’re doing and putting out into the world, even if all I am is a witness and cheerleader. I see them changing the world, person by person, and I can’t be anything but thankful for the path that led me to each and every one of them.
RELEASING MUSIC AGAIN – This year, I finally, FINALLY, released new music and, not only that, but I released my beloved Autism centric project, Too Much And Not Enough, Vol. 1. I started working on this in 2021 but I’ve been thinking about it for even longer and now it’s finally out in the world and people are actually listening to it! I’ve had some amazing feedback on it and some of the stories people have shared with me upon hearing it have been so incredibly touching. I’m so grateful to everyone who has listened to it so far and I am so beyond grateful to everyone who helped me to make it what it is and then get it out in the world. Working with you all was an absolute joy and I could not have done this without you. It may have been the most stressful experience of my life but I have never been so proud of anything and I can’t wait to share what I have planned for 2026.

(Write This Out – Single, In The Mourning – Single, The Loneliest Whale – Single, Too Close And Not Enough, Vol. 1 – EP (top to bottom, left to right))
SO MANY GREAT SHOWS – Concert wise, I thought last year was probably unbeatable with so many incredible concerts – from the super special album release shows of my friends to the almost-four-hour-long epic that was Taylor Swift’s The Eras Tour – but this year was also deeply special in its own way. Several of my friends released new music and I got to see them perform those songs live at the launch parties. Cora Rebel released her second EP, Small Town Murder, which I love even more than her first EP, Room For Wonder. I’m not kidding: I’m still obsessed with every single song. Similarly, I’ve been a fan of Jaz Beeson’s music since we met at university and the EP she released this year, Aren’t You Cool, is so good and her live performance has only gotten better since I last saw her and her band perform. I also made friends with the wonderful Tygermylk this year and when they released their debut album, Local Girl, Always Tired, I got to see them play the whole album live in a beautiful church in London; it was such a special event. I feel so lucky to have so many creative friends putting such awesome work out in the world and I’m so excited for what I know is coming in the new year. I also got to see Maisie Peters at one of her two Before The Bloom shows, where she gave us a sneak peak at her new album while revisiting past songs that she felt reflected the same energy as the new music, which I thought was a really cool way of structuring a gig; I got to see Maren Morris blow the roof off The Roundhouse with one of my greatest friends (we’ve been going to her shows together since The Hero Tour in 2017); and Gracie Abrams just blew me away on The Secret of Us Tour to the degree that I bought a ticket to a second show because she was so good. And I can’t talk about amazing gigs without talking about Erin LeCount (although I want to talk about her more in a minute). I saw her first in May where she headlined Bush Hall in London and she was amazing. I wasn’t able to see her the next time she was in London (because the accessibility team at the venue were actually the worst I’ve ever encountered) but when I saw her in December when she sold out KOKO in London, she was absolutely incredible: she only released her second EP in April and she’s already such a compelling performer. That second show was one of the best I’ve ever been to and I was so moved when she played my favourite songs that I cried (something I’m rarely able to do in public after years of masking). It was a deeply special year of concerts, just like 2024 but in a very different way. I’m grateful for every single one.
(Left: Sarah Close, Cora Rebel, Gracie Abrams, Erin LeCount (clockwise) // Middle: Gracie Abrams, crybby, Maisie Peters, Jaz Beeson (clockwise) // Right: Maren Morris, Tygermylk, Erin LeCount, Erin LeCount (clockwise))
And while it wasn’t a show, I did get to go and fangirl my little heart out at Ascension, a new Stargate convention. I got to see so many of my friends from The Companion, which was so much fun and although Amanda Tapping, one of my biggest heroes, had to pull out of the event, I got to meet Richard Dean Anderson who is the most wonderful human being and it was such a special experience. And he’s such a dog person so he and Daisy had some absolutely gorgeous moments together. It was Daisy’s biggest outing so far but she did brilliantly and was absolutely adored by everyone from the moment I took her jacket off to the moment I put it back on again – everyone was so respectful when she was working, which made the experience so much easier for the both of us, and it was so lovely to see how happy she made all of the guests and attendees, especially when she was off duty and was allowed to interact with everyone. Richard Dean Anderson called her his favourite convention attendee, which still makes me smile so much. I can’t wait for Ascension 2 in 2026!
ERIN LECOUNT’S MUSIC – I found Erin LeCount in late 2024 and her music completely dominated my listening time over the last year. She put out her second EP, I Am Digital, I Am Divine, in April, which is a stunning, beautifully cohesive project: the concept, the themes, the lyrics, the vocals, the melodies, the production… they’re all incredible. When she released the EP, she described it as being “about feeling dysfunctional and like there is something inherently wrong with you, the ‘digital’ being this neurotic, obsessive, ‘cold’ and very analytical part of me that felt like a battling a part of me that’s very sensitive, the ‘divine’ and the big overwhelming feelings. They’re two sides of the same coin that I’m always finding how to balance, and these songs are all those many imbalances and highs and lows.” I relate to that statement so much and I relate to every song, although my favourites are ‘Marble Arch,’ ‘Sweet Fruit,’ and ‘Silver Spoon’ (I’ve written more about the individual songs in my upcoming Songs of 2025 post so I won’t double up by deep diving into them here), with lyrics like “I am hard to love / Not what you thought / Am I? Am I? Am I? / Is there a fault in my core? / Did I do something wrong? / Did I? Did I? Did I?” and “I need someone / To look through and see me, to rip out the weeds / Growing where my heart was” and “I split the good wine, I panicked / A disaster, a knee-jerk reaction / Then everyone around us starts laughing / Is that how it’s meant to happen?” and “You were sweet, I got mean / And when we fight, I refuse to eat.” She’s since released two more songs, ‘808 HYMN‘ and ‘MACHINE GHOST,’ both of which I love but ‘MACHINE GHOST’ instantly became my favourite song of this year and probably for a long time to come; I feel the theme of dissociation so deeply (especially as I do more and more somatic work and the connection between my brain and body gets stronger – I actually listen to this song during therapy because my therapist says my body is more receptive to releasing trauma compared to when I’m not listening to it) and the lyrics, like “It hurts to stand, it hurts to stand / It hurts to stand, it hurts to stand,” and “Lights come on and there’s nobody home / And all my love pushed my back against the wall / Can someone tell god I should be feeling this more? / I can’t love you like I am supposed to / Baby, you’re the machine and I’m the ghost,” and “‘Cause everything starts hurting when I see the world in colour / And I wanna turn it off,” and “I’m not at the party and I’m not in my body,” feel like they could’ve been written for me. I feel so seen and so validated by her music and watching her produce all of her music and then recreate some of these tracks live on stage is so inspiring to me, so much so that I’ve started learning more about production for my own creative process when making music. I’ve already talked about seeing her live and how special that has been, her recent show at KOKO being one of the best shows I’ve ever been to. I wish I’d found her sooner but I’m so grateful that I found her when I did because her music means so much to me and watching her creative process and live performance develop in real time is so, so beautiful.
There has been so much to be thankful for, despite how difficult this year has been. In my experience, the relationship between gratitude and depression can be a complicated one, given how depression distorts reality and dampens emotions, and it’s something I’ve been struggling with for several years now. Sometimes engaging with that tug of war is just too hard, especially when I’m already working so hard in therapy, so the only thing I can do is acknowledge that it’s there – that it is complicated – while honouring the things in my life that are objectively positive, the things that make my life better. Sometimes that’s all you can do and that’s got to be enough.
Category: about me, animals, autism dog, depression, emotions, exercise, family, favourites, hydrotherapy, music, special interests, therapy, writing Tagged: actuallyautistic, altpop, altpop artist, asd, autism, autism assistance dog, autism dog, autism dogs, autism dogs cic, autism spectrum disorder, autistic, autistic artist, autistic singer, autistic songwriter, autitic singer, cat, cat death, cat loss, chronic illness, chronic pain, chronically ill, content warning, depression, depressive episode, dog, erin lecount, family, family of cats, friends, heds, hydrotherapy, hydrotherapy exercises, hypermobile, hypermobile ehlers danlos syndrome, hypermobility, independent artist, indiepop, indiepop artist, live music, machine ghost, mental health, mental illness, mum, parents, pet death, pet loss, pinched nerve, poetry, poetry orchard, pool, singer, singersongwriter, somatic therapy, songwriter, swimming, swimming pool, tattoo, tattoos, therapist, therapy, trauma therapy, trd, treatment resistant depression, trigger warning, writing community
Posted on November 19, 2023
This week – from Monday 13th to Sunday 19th November – is Self Care Week, a UK-wide awareness week established and run by the Self Care Forum, a charity that aims to spread understanding about the positive impact of self care and helping people to implement it into their everyday lives. This includes the benefits of good nutrition and exercise, of taking vitamins (like vitamin D, especially for those whose health means they spend all or most of their time inside), of managing our mental health; they also guide people in making more positive lifestyle choices (to no one’s surprise, ‘homelessness’ is not on their list – fuck you, Suella Braverman), go into schools to help improve health literacy, and support people in understanding how to manage both short and long term health conditions. All good things!
I can’t speak to their understanding of neurodivergent or Autism focussed self care – I haven’t been able to find anything on their website – although much of their advice applies to all of us as human beings with the same basic needs. I thought that, in recognition of this week and the importance of self care, I’d put together a list of strategies that I personally rely on, many of which I’ve developed to help me manage as a neurodivergent person.
Obviously not all of these will work for every person, the personal ones that is: the physical ones apply to all of us to a certain degree, depending on our individual circumstances and needs. But when it comes to the personal ones, it’s unlikely that all or even most will work for everyone. But hopefully, given how many I’ve included, there will be something that’s helpful – or just worth trying – to anyone who reads this…
PHYSICAL:
When I’m struggling, I know that I need to check in with my body. I’m really not very good at noticing my body’s signals – my interoception is pretty poor, something that isn’t unusual in neurodivergent individuals – so I often have to go through this list consciously to figure out what it is my body is asking for. Others are better at this but it’s always worth checking to make sure that there isn’t a straightforward way of understanding why you might be feeling the way you do and of improving both your physical and mental state…
PERSONAL:
Here is a short list of the things that help me to manage when I’m struggling, when I’m feeling overwhelmed and burned out, when my mental health isn’t great. It’s a constantly evolving list, depending on what’s going on in my life and what my needs are, but this is my current list of self care strategies, ones that are the most helpful at this point in time.
I’ve been working on my self care this year and there are times when I can really see the difference it’s made: I’m really enjoying exercise for the first time in my life; I’m drinking more water than I ever have; my relationship with social media is better than it’s ever been; I feel more confident in my friendships; and so on. There are still plenty of aspects to work on but I can see the positive effect it’s had on my life.
I’d love to know how you guys feel about all of this, about self care in general and on a personal level. What self care strategies do you use? Which ones do you find the most effective? Here’s a great list if you need more ideas.
Category: about me, animals, anxiety, autism, body image, book, chronic fatigue, chronic pain, depression, emotions, exercise, family, favourites, food, hydrotherapy, medication, mental health, music, pots, sleep, special interests, therapy, tips, writing Tagged: animal, asc, asd, autism, autism spectrum condition, autism spectrum disorder, awareness week, body, body image, book, breath, breathe, breathing, breathing techniques, breathwork, cat, cats, chronic fatigue, chronic pain, crafts, demands, diary, dog, emotional needs, exercise, family, favourites, film, food, friends, health, hunger, hydration, hydrotherapy, interoception, journal, journaling, mental health, mum, neurodivergent, pet, pets, physical health, physical needs, physiotherapy, puppy, relaxation, relaxation techniques, rest, self care, self care awareness week, self care forum, self care week, sleep, social media, special interests, support group, swimming, therapist, tv show, wellbeing, writing
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