Self Care Week (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…

  1. BREATHE – When I’m struggling, I often feel like I can’t take a deep breath, something that only makes me feel worse. Learning breathing techniques, like box breathing, have been really helpful but the most effective and my personal favourite way to regulate my breath is to sing: it’s something I love doing and something I can get lost in, focussing on the words and the melody, so I don’t even notice the breathwork. I find it much easier and much more soothing to concentrate on hitting each note, rather than on counting, for example.
  2. HYDRATE – We all know how important it is to stay hydrated and yet most of us are constantly battling some level of dehydration, finding it difficult to drink the recommended amount of water. I’ve been working on drinking more and I am doing better than I used to but I still find it really hard to actually drink as much as I should. I’ve found that reminders (or an app that reminds me), a bottle that I find pleasing, and consistently carrying that bottle with me all help.
  3. EAT – Sometimes making sure that our bodies are fuelled can feel like a massive task; I certainly struggle with it and when I’m struggling, it’s usually the first thing to get abandoned. Sometimes I only manage one meal a day, as I promised my first therapist, and I try to keep her words in mind: if a cupcake, for example, is all I can manage then that’s better than nothing. You can work up from there. And it’s so important to remember that, in this world where food can feel like such a minefield, it’s totally okay – and good for your mental health – to indulge in your favourite snack, your favourite meal, your favourite takeaway, just as long as you don’t end up living on it.
  4. REST – Living in a society that is constantly ‘encouraging’ us to do more (see: telling us that we’re never working, or even trying, hard enough), most of us are constantly tired. I know I am, especially when you throw in the neurodivergence and chronic fatigue. We all need more rest. Dr Saundra Dalton-Smith has broken rest down into seven categories – physical, mental, social, sensory, creative, emotional, and spiritual – and asserts that only by fulfilling all of these can we be truly rested. After reading this article, I’ve been inspired to think of rest as something more nuanced than just whether I’m getting enough sleep or not – although that is, of course, important too.
  5. EXERCISE (OR JUST MOVE YOUR BODY A LITTLE) – We’ve all been told countless times how important exercise is for our bodies and it is, of course, true. Having said that, it’s not going to be very useful as a self care strategy if you’re hating every second of it. Finding a way of exercising that is fun and empowering is so important, both in terms of self care and in terms of exercising regularly. Because of my chronic fatigue and chronic pain, I’ve long struggled with exercise because it put such strain on my body and because I suffered so much afterwards. But then I started swimming again and, apart from the lockdowns, I haven’t stopped since. It’s a great form of non-weight-bearing exercise and it feels amazing to exercise (or just move my body gently if I’m having a bad energy or pain day) without feeling so much distress. It makes me feel able and strong, both things I haven’t felt since I was a kid, and it always boosts my mood. Plus, if I go at quiet times or even have the pool to myself, I don’t feel such anxiety about how I look in a swimming costume. Other things I’ve found really helpful are both hydrotherapy and physiotherapy. In and out of the pool, I feel more confident knowing that I have the support and advice of a trained professional, especially given how unreliable my body can be.
  6. HYGIENE – Feeling clean always feels good so, aside from the obvious physical health benefits, it’s always good for your mental health to have a shower or a bath (or even just clean up in the sink if that’s all you can manage at that moment in time – I find just washing my face can help clear my head). A bath or shower can be as luxurious or as functional as you want: it’s your headspace so you should do what’s going to help you the most. Some people really enjoy a long bath with fun or relaxing products and a book to read, while some people find that too much and prefer a simple, straightforward wash in the shower. I’m the latter – one of the symptoms of POTS makes both the heat and the standing involved in taking a shower dizzying and strenuous – but that is enough to improve my mood, to make me feel decontaminated and renewed. Those may sound like strange words to use but it’s how I feel and those feelings do, for the most part, lift my mood.
  7. MEDICATION – This won’t apply to everyone but taking your prescribed medication, or any over the counter medications that you need, (all safely and as directed, of course) is obviously very important; not only has a (hopefully) knowledgeable and experienced professional recommended you take them to improve your quality of life but missing a dose or stopping the routine suddenly can have nasty side effects. So making sure that you’re up to date on any medication can be crucial to maintaining your physical and/or mental health.

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.

  1. REDUCE DEMANDS ON MYSELF – The first thing I do when I’m feeling overly stressed and at the end of my rope is reduce my commitments and plans, giving myself time and space for my energy levels – all of my energy levels – to recover. Sometimes there are things that I can’t miss and I just have to shoulder my way through, accepting that it will then take longer to recover. And sometimes it does just take longer than others anyway. But if I don’t immediately take time for my mental health, my mental health will force me to and for likely a lot longer than I would’ve originally needed.
  2. RETREAT TO MY BUBBLE – Not long after I moved into my current house, I discovered that a really good way to reduce my stress was to spend my time in what I quickly dubbed my ‘bubble’: the front room of the house that, with the sun and the outside world muted by the drawn, light-coloured curtains, was gentle on my senses, making it much easier to work and get things done. That discovery showed me how great the sensory demands that I was experiencing were and having a space where I could reduce those demands has been pretty life-changing.
  3. CREATE SOME ORGANISATION IN MY LIFE – If I’m feeling overwhelmed and/or burned out, it’s likely that I’m trying to do too much, or that that is at least part of the problem. So, after taking the time to recover, I try to adjust my approach going forward: what commitments I say yes to, how much time I build in between commitments, how much time I’m making for important things like swimming and physiotherapy, and so on. When my schedule is more intentional and less chaotic, I find that the balance in my life never tips too far in any direction.
  4. TIME FOR SPECIAL INTERESTSResearch has shown how important it is for autistic people and our wellbeing to engage in our special interests so, although we should be making time for them anyway, I would consider it self care to make additional, deadline-free time to just immerse myself in the things I love so much. Engaging with something that absorbs you so completely and triggers such a wealth of emotion is always going to be good for the soul, I think.
  5. TALK TO MY MUM – My Mum has seen me through everything, all of the highs and lows (and catastrophic lows), and always been so supportive, regardless of whether it’s my health, my creative ambitions, or my relentless dissecting of fictional stories and their characters. I can tell her anything and often talking things out with her helps me gain a clarity that I might struggle to find otherwise.
  6. TALK TO MY FRIENDS – Sometimes I just need some time and some space to recover my social battery but, for pretty much the first time in my life, I have an amazing group of friends that I feel like I can really rely on, that I can always talk to, and that I can trust with anything. That is kind of mind-blowing to me, in a good way. Being able to talk to them – long WhatsApp chats, afternoons spent on Zoom, texting silly memes back and forth, and so on – has been so lovely. I’m very grateful to have them in my life.
  7. TIME WITH MY PETS – Spending time with my cats and/or my new puppy, Izzy, is one of the most soothing experiences I know of. They’re so present, so unaware of everything going on in the world; it’s hard not to get sucked into that, even just for a little while. Sometimes you need a break from all of the terrifying things going on in the world and their little pocket of it is the perfect place to escape to.
  8. TAKE A BREAK FROM SOCIAL MEDIA – While there are parts of social media that I enjoy, I’ve found that taking a complete break from social media has the power to rebalance my mental state and give me space to breathe, a space I didn’t realise I needed until my mental health forced me to take a break. Since I’ve been back on the apps, I’ve found it easier to recognise when I’ve had enough, when it’s getting to me, and when I need to log off. Social media can provide us with unique inspiration and access to fantastic art that we wouldn’t otherwise have seen, as well as communities that can be harder to access in the real world, but sometimes the level of toxicity or just curation can get overwhelming, making it harder to maintain your balance and sense of identity. Taking a break can feel really hard – the fear of missing an important update or losing out on an opportunity are valid anxieties – but in my experience, taking a break can help you to recalibrate and figure out where you really want to be focussing your energies. You want to be making that choice, not the algorithms.
  9. BUY SOMETHING I NEED / SOMETHING SMALL THAT I WANT – Sometimes you just need something to look forward to, whether it’s a new planner, a necklace you’ve been waiting to go on sale, or a new toy for your pet. It really doesn’t have to be complicated or expensive: if it gives you a boost to get through a hard week or a scary appointment, then it may be worth it.
  10. WRITE IN MY DIARY – I’ve long found that the process of turning my thoughts into comprehensible sentences and getting them written down somewhere safe, whether that’s in a notebook or on my laptop, to be a great source of stress relief. Not only does it help me to make sense of my thoughts and feelings and experiences but it also takes the weight off my mind: it makes me feel like, having stored those thoughts in a safe place, I don’t have to consciously hold on to them for fear of them disappearing. Not unlike having a dramatic haircut, I feel much lighter for being able to offload everything in my head.
  11. CONTACT MY THERAPIST – At this moment in time, it’s never that long until I’ll be seeing my therapist next and I can talk to her about what I’m struggling with, or we can talk through everything that’s going on if the hard stuff is feeling somewhat nebulous. And if that feels too long, I can email her, if only to get my thoughts out of my head and allow her to get a head start on where my head is before I arrive at my next session. Therapy – with a therapist I feel safe with – is a really important space for me, with everything I’ve gone through and everything I live with on a day-to-day basis.It’s really hard a lot of the time but, for the most part, I’m better going than not.
  12. GO TO A SUPPORT GROUP – This year I’ve started to attend support groups for some of the conditions I live with and for some of the experiences I’ve had, online for the most part, and although the format and the social and emotional etiquette have taken a bit of getting used to, I’ve found the experiences to be really positive and validating. I don’t always feel the need to go but it helps to know they’re there if I need some extra support.
  13. CRAFT PROJECT – Sometimes I find that having something creative to do with my hands, something without any stakes, is really could for an anxious mind and body. Over the years, I’ve slowly filled a notebook with inspiring quotes, made cards out of spirograph designs, learned origami, made both thread and beaded friendship bracelets… The concentration it requires just shuts everything else out and gives my brain a break. These obviously aren’t the only options: whatever works for you is a good option.
  14. READ A BOOK – I recently got back into reading after a very long break and I’d forgotten how completely you can lose yourself in a book. I’ve been revisiting old favourites and working through my ‘To Read’ list and it’s been so lovely to be so absorbed in stories and worlds and characters again, in a way that has the rest of the world just fading away. I’m enjoying audiobooks too, although I still prefer physical books.
  15. WATCH A FAVOURITE FILM OR TV SHOW –  I’ve consistently found that both watching new films and TV shows and rewatching old favourites are a really good way to relax. Similarly to reading, I find them to be a great way to take a break from the emotions of the real world, plus I love exploring the characters and the storytelling and so on (to a point where it might be a special interest actually); it can really boost my creativity and my joy around creating. Getting sucked into something new is always exciting and watching something old is very comforting, both of which are – I think, at least – positive emotions to dig into when you’re struggling emotionally.

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.

Changing Therapist

TW: Mentions of self harm and suicidal thoughts and urges.

It’s been a year since I started therapy again after an unintentional break, essentially starting again with a new therapist. It’s been a hard and emotional process, and at times a distressing one; just going to therapy can make you feel so vulnerable and so open to further hurt as you dig into the hard stuff – wading into dark waters that you’d rather ignore and pretend don’t exist, even as they’re eroding your mental health – that adding difficulties to that already difficult thing can feel unfairly cruel. So, given that I’m me, I thought that, perhaps, writing about it might be helpful and maybe not just for me but for anyone going through a similar transition. And if not helpful, then hopefully validating in some way.


I’d been seeing Therapist A for almost seven years when everything changed. She was taking leave and I was on my own.

Pre-2021, I’d seen Therapist A once or twice a week pretty consistently since early 2016. Even when the UK went into lockdown due to COVID-19 at the beginning of 2020, we continued our sessions online; I didn’t find them as productive but it was better than nothing. We continued that way for a while, trying to manage my crippling anxiety over the pandemic, working on issues that came up as I persisted with my now online Masters classes, and continuing to work on the issues that had landed me in therapy in the first place. But then the schedule began to slip: Therapist A’s home life was pulling her away from work and I was working myself into the ground in order to complete the final project of my Masters. I barely saw her in the last four months of the course, which I really struggled with: I was digging into some pretty hard stuff, writing song after song about my experience of being autistic, and I craved that safe space to play them to her, to hear her perspective on what I was saying, talk about the feelings they were bringing up, and she wasn’t there. I told myself that it was a short term thing and that, once the Masters was over and her stuff was resolved, the schedule of our sessions would go back to normal. I think it’s safe to say that, given the title of this post, it didn’t.

I finished the Masters in September 2021 and officially graduated, walking the stage, a few months later in November. I had reduced and stopped taking Phenelzine at this point, in preparation for trying ADHD meds (and we all know how appallingly that went), and my depression was creeping back in; the situation was getting pretty desperate. But luckily, that was when Therapist A reached out and we started having sessions again. We had a lot of catching up to do but, by mid-December, we were up to date. Unfortunately, the ADHD medication was already hitting me hard and my depression had gone from a state I recognised to a whole new level of despair with increasingly overwhelming suicidal thoughts. My most vivid memory from that time is sitting in Therapist A’s new office, staring at the unfamiliar rug and hearing my voice in my ears as I confessed to those thoughts, my voice completely flat (this is known as ‘flat affect,’ a recognised symptom of depression and other mental health conditions). It still makes me nauseous to think about, even though so much time has passed and my depression has gotten so much worse since; I think, in my head, that was the beginning of this awful, awful time.

My last session was on New Years Eve and I was drowning, all of the impending new beginnings feeling more like a threat than a promise. When we hung up, I felt achingly hollow and that was only the beginning of a terrible night. But that’s a story for another time. January was passing around me, aimless and anxious, when I finally heard from Therapist A. But instead of setting up our next session, she was letting me know that she was taking leave indefinitely. Her reasons aren’t mine to tell but, between those, my ongoing abandonment issues, and my overwhelmingly bad mental health, I was devastated, spiralling into some grotesque hybrid of a meltdown and a panic attack that went on for hours: I screamed, I cried, I scratched at my face, I tore at my hair, I shrieked like an animal in pain. I guess that’s what I was. I felt like I was trying to exorcise a corrosive demon from my body but nothing helped, nothing alleviated the pain. I was shattered as brutally as if I’d been hit by a wrecking ball. That’s what it felt like, what my life felt like.

Eventually I physically ran out of energy and fell asleep, too tired and emotionally drained to even engage with the world. My depression became more and more overwhelming, compounded by the devastating effects of the ADHD medications and the loss of a massive source of support in my life, and, for months afterwards, I barely got out of bed, barely ate, barely talked. I abandoned social media and I avoided mirrors at every opportunity, to the point where I started to forget what I looked like. The suicidal thoughts were only getting stronger, stronger than they’d ever been in my life, and the feeling of being intrinsically, irreparably broken was – and is – a constant weight in my chest.

I’m not sure when or why I started getting out of bed, why I decided that I needed to go back to therapy. I think I  knew I was getting into a very precarious position mentally and the excruciating pain of being inside my head was getting so unbearable that I was willing to do anything to lessen the pressure. I did see a consultant at the local mental health unit but the experience was another traumatic one: after a panic attack at the front door, a junior doctor took my history and then brought in the consultant who told me about ECT and the Ketamine trials before telling me why I shouldn’t do them and recommending doing more of the things I love (which I’d already told him I couldn’t engage with because I was so depressed). So that didn’t improve my relationship with doctors and the medical profession.

For a short while, I worked with a therapist I’d met several years previously but the sessions only made me feel worse and while I have no doubt that it wasn’t intentional, I ended up feeling more broken and more traumatised by some of the things he said, trauma that I’m still carrying around with me. So I stopped seeing him and met with several new therapists, trying to get a feel for them and their methods before committing to someone new. But, just like with Therapist A, Therapist B was the first of the group that I met (a year ago yesterday, I believe) and between her therapeutic approach, her personality, and the fact that she’d brought along a dog she knew in order to put me at ease, she was the obvious choice.

As therapists, they both trained in several of the same disciplines and their skillsets overlap to a certain degree but, when discussing a particular issue, there were differences to how they’d approach it; there has been a fair amount of whiplash in getting use to Therapist B’s approach after so many years with Therapist A. But the point of this post isn’t to compare them – they’re both lovely people and very good at what they do, at least as far as I can tell – but rather to reflect on the process of moving from one to another and the feelings that that kicked up. And a lot of feelings there were – I even wrote a song about it called ‘Grave Digger.’ During the early sessions with Therapist B, we made a timeline of my life and discussed some of the biggest moments, many of which were difficult and distressing (and remain so to this day). Revisiting and recounting the hardest parts of my life was gruelling but I did my best to push through the internal resistance and breathe through the resulting turmoil; between that and the ongoing mental anguish, it was a difficult few months. I don’t mean to make it sound like one continuous torture because that isn’t true -we’ve talked about the good experiences that’ve made me who I am, of course, and there have been sessions where we’ve laughed a lot – but I think that building a strong relationship with a therapist and making progress will always involve periods of incredible vulnerability, which is always scary and, at times, painful.

Sometimes – okay, often – I feel like I’m not making any progress at all, partly because of all the disruption and the distress it’s caused. A year ago, I hadn’t expected to see 2023 and my depression and chronic suicidal thoughts haven’t lessened, even though I am taking Phenelzine again (at a higher dose, in fact) – after many discussions with Therapist B. It has made me more functional, to a certain degree, but the decision came with a price tag: my self harming escalated from cutting my arm to cutting my face. I’m not convinced anything’s changed; I don’t feel any better. But I can see that some things have changed and changed for the better, even though I can’t feel the effects yet: something has allowed me to start talking about some of the worst stuff in my brain, even if only a little. It’s something I could never have imagined doing so I know that that’s progress, even though I struggle to feel it.


I have heard from Therapist A several times now; the news has generally been positive, which has been a great relief (and I appreciate having a little less uncertainty in my life). Therapy is continuing as normal – the current version of normal at least – which I’m pretty sure is a good thing: the idea of trying to work my way through all of the emotions that I know would come up as a result of any potential change makes me feel physically nauseous.

I’m not always convinced that I’ve adjusted and sometimes I forget that I’m not going to see Therapist A, my body moving in the direction of that office as the car turns down a different road; that experience is more ingrained than I had realised at the time. And I know I’m still carrying a lot of hurt and anger over the whole thing, even though over a year has passed. I’m not angry at the people involved – nobody chose any of this – but there is anger and, although I’ve been slower to realise it, hurt too. I think it’s easier to be angry than to be hurt. Not always but sometimes. And, as I said, I have abandonment issues, issues that I’ve struggled with for a long time, which – unsurprisingly – have been exacerbated by this whole thing. It’s hard to lose someone that you trusted to never leave (a naïve ideal, I know) and it’s hard to trust someone new, ignoring the whispers that they’re just another person who will inevitably walk away. I think these issues are important to mention but they probably need their own blog post rather than taking up space here: when talking about changing therapists, it’s not something that everyone has mixed into the equation. All of that said, I’m trying to trust and I think that, for the most part, I am, even if it does sometimes feel like a conscious, concentrated effort. The progress isn’t as fast as I’d hoped it would be when I committed to therapy again last year but the proof is there. I’m sharing things I never thought I’d share and that’s certainly not nothing.

Trying To Get Tickets To The ERAS Tour As A Disabled Person

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.)

(1) (2) (3) (4) (5)