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 November 5, 2023
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.
Category: about me, anxiety, autism, covid-19 pandemic, depression, emotions, medication, meltdowns, mental health, self harm, suicide, therapy, treatment, university, writing Tagged: abandonment, abandonment issues, actuallyautistic, adhd, adhd medication, antidepressants, asc, asd, attention deficit hyperactivity disorder, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, autistic artist, autistic meltdown, autistic songwriter, covid, covid-19, cptsd, dbt, depression, dialectical behaviour therapy, ect, electroconvulsive therapy, fear of abandonment, flat affect, graduation, ketamine, ketamine trials, masters, masters degree, masters degree in songwriting, medical trauma, medication, meltdown, mental illness, online therapy, panic attack, phenelzine, radically open dialectical behaviour therapy, rodbt, self harm, self injury, songwriter, songwriting, suicidal, suicidal ideation, suicidal thoughts, suicidal urges, therapist, therapy, trauma, trd, treatment resistant depression, university
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