Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
Category: about me, autism, bpd, chronic fatigue, chronic pain, covid-19 pandemic, depression, emotions, family, heds, medication, mental health, therapy, treatment Tagged: abandonment, ableism, adhd, adhd inattentive type, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, borderline personality disorder, bpd, depressed, depression, disability, disabled, family, fear of abandonment, friends, isolated, isolation, ivebeenthere, life, loneliness, lonely, medical services, medical trauma, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2022, mentalhealthawarenessweek, milestones, multiple diagnoses, nhs, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, quiet borderline, quiet borderline personality disorder, the mental health foundation, trauma
Posted on October 31, 2021
Not long after I learned that October is ADHD Awareness Month, I saw this challenge on Twitter and you know me, I love a good challenge.
I thought it would be annoying to post something every day, especially since I knew just from looking at the prompts that there would be days when I didn’t have much to say, so I decided to do the month as one self-contained post. Having ADHD and everything that comes with that… it’s all still relatively new and I’m still trying to figure it all out, especially considering the crossover with autistic traits. I thought that, maybe, this might help with gaining a better understanding of ADHD and how it affects me individually.
So, here we go…
Day 1 – Introduction
If you’ve been reading my blog for a while, you may know some of this stuff already so bear with me…
My name is Lauren Alex Hooper and I’m a twenty seven year old woman (I use she/her pronouns), although I’m not really sure how I identify in terms of gender and sexuality; up to now, all of my energy has been spent on figuring out and managing my health so there hasn’t really been the time to explore that area of my identity. Between the ages of twenty and twenty six, I was diagnosed with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) (Inattentive Type), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Tachycardia Syndrome (POTS), Treatment Resistant Depression (TRD), Generalized Anxiety Disorder (GAD), Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD). These conditions all affect me daily and I live with both chronic pain and chronic fatigue, believed to be due to my hEDS. Given the often overwhelming challenges that these all present, I’m still living at home with my Mum and our family of five cats (made up of three generations). Two of my other parents live nearby, with my fourth parent in London. My younger sibling, Charlie – who is an amazing artist of many disciplines – is also based there.
In roughly the same time period, I completed a BA and an MA in Songwriting, my biggest and most enduring special interest. In 2018, I released my debut single, ‘Invisible,’ a song that documents my struggle to be seen and heard as I tried to get help for my mental health and ASD; I’m incredibly proud of that song and all of the proceeds go to YoungMinds, a charity supporting young people with their mental health. Then, in 2019, I began the release cycle of my debut EP, Honest, which was completed in late 2020 (delayed somewhat by the pandemic). The EP is a collection of my experiences with mental health, centered around the idea that things only really got better when I started being open and honest about what I was going through. As of October 2021, this little, self released EP that was made in various bedrooms has reached over 120,000 streams with a limited run of physical copies on sale at Resident Music, THE independent music shop in Brighton (UK), where I live. It’s been an absolute rollercoaster but I’m really proud of it and all it’s achieved. And now, with that era all but wrapped up and my Masters done, I’m working on several new projects, including an album about my experiences as an autistic woman.
Day 2 – What I love about being an ADHDer is…
Given the overlap between Autism and ADHD, I’m not entirely sure where which traits come from, if it’s possible to really separate them. I’ve done some research and it seems that there’s too much overlap to truly say that one trait belongs to one and not the other but the following things are what seem to commonly come up in relation to the positives/strengths of ADHD…
I have to say I’m not wild about the term ‘ADHDer.’ It feels very clumsy. It also feels a bit like something I actively participate in, like I chose it, like I’m saying, “I’m a runner,” or “I’m a painter.” I don’t know; I’m not convinced by it as an identifier.
Day 3 – My Identification/Discovery Story
I was being assessed for hypermobility (and was subsequently diagnosed with hEDS) and at the end of the session, it came up in conversation that I was thinking about getting tested for ADHD (I’d been researching the ways I’d been struggling and ADHD had come up as a possibility, which I know often occurs alongside Autism) and the consultant said that she was qualified to do that so we could schedule an assessment if I wanted to. So we did and a few months later, I was diagnosed with Inattentive ADHD.
Day 4 – Reactions to Identification
Since this is just another step on my journey of trying to make sense of myself and why I struggle the way I do, I haven’t really felt the need to make an announcement or anything like that. I told my family and friends, of course, and I’ve brought it up when necessary, like when trying to get accommodations at uni, but otherwise it hasn’t been been a huge thing, not like discovering I was autistic was. So everyone’s just kind of taken it in stride, adding it to their picture of me – those who know about it anyway.
Day 5 – Hobby Graveyard
I’ve never really thought of moving on to a new hobby as leaving them in a ‘hobby graveyard.’ I’ve always felt like it was more that I was prioritising certain stuff or that I was just finding my way to more ‘suitable’ hobbies. Technically, yes, I have multiple hobbies that I’ve stopped doing but rarely because I got bored of them and more because I evolved away from them. But here are some of my past hobbies…
That’s all I can think of off the top of my head. I still love most of these things but I just can’t physically do all of these hobbies: I don’t have the time, they’re expensive, and there are other things I love doing more. But hopefully I can come back to them one day in some way or another.
Day 6 – Supports and Appreciation
I am super lucky to have a lot of great people in my corner. I have a wonderful, close-knit family who have all been deeply supportive; not only have they all been great in general but they’ve all been so incredibly helpful in different areas of my life over the years. I can’t even begin to express how grateful I am, especially to my Mum. She has been a hundred percent with me every step of the way and she’s just been a force of nature in the pursuit of getting people to listen to and help me. And not just that, she supports me every day, helps me to manage just being alive, just being a person in this difficult, inflexible society. I don’t know what I’d do without her. Oh, and there are also my cats who, while they have absolutely no idea about any of this I’m sure, help maintain some level of calm in all the chaos.
I’m also very lucky to have some really great friends. They’ve never been weird about all of my diagnoses, only ever respectfully curious about the parts they don’t know much about. And I’m always open to questions. Once, while in conversation with a friend, I said that I was always happy to answer questions and in reply, she said that all she needed to do to understand me was listen to my songs. I probably looked like a deer in headlights. I mean, that’s what I try to do with my songs but to hear her say it so plainly kind of took my breath away. My friends are really sweet about supporting me and accommodating the issues that make my life hard, that make spending time together hard. I appreciate it so much; a lot of these things that I struggle with make maintaining friendships (from both sides) really hard and it means so much to me that my friends have stuck with me.
And although I’ve had some really supportive tutors over the years, I only recently had a neurodivergent tutor for the first time and it was amazing. It’s like we spoke the same language and she was able to translate this confusing academic world into ideas and words that I understood. I got so much out of my course and out of the work I was doing in the time she was my supervisor; it was pretty amazing to work with the guidance of someone who has a real understanding (and also appreciation as well) of how differently my brain works. And considering how well I did in the module, I think that shows just how well a neurodivergent person can do when they’re understood and supported.
Day 7 – The ADHDer Community
I haven’t really found ‘the community’ yet. After my ASD diagnosis, it was about three years before I sought out any kind of community; I had to figure out what being autistic meant to me first before I could engage further, if that makes sense. So I wouldn’t be surprised if it takes me a while to feel ready to reach out but then maybe it will be quicker this time since I’ve already gone through a similar process. I’m part of multiple Facebook groups relating to Autism, one of which is for women with Autism and ADHD, and I’ve enjoyed those interactions a lot so far. I also have a friend who’s going through the ADHD diagnostic process at the moment so it’s nice to be able to share those experiences with someone I already know since I didn’t go through it that long ago.
Day 8 – Favourite ADHDer Blogs/Comics
I have to say, I haven’t really found any ADHD blogs or comics that really speak to me yet. But I also haven’t been looking in any kind of dedicated way. I’m still making sense of this diagnosis, still trying to manage the struggles, and still trying to get help for it. That’s my main focus at the moment.
Day 9 – Favourite ADHD Owned Business
With Christmas not that far away, I have been looking for present ideas and I do like to buy from independent shops when I can. I’ve found a few autistic owned shops but as of yet, I haven’t found any ADHD owned shops yet. But I’m still looking.
Day 10 – Sensory Seeking/Aversion
I’m generally a sensory-seeking person but they’re very specific sensory experiences that I crave. I love colour and I love lights, especially colourful lights (as long as they’re not in my eyes or face). I love glittery things and shiny things. I also love patterns: smooth curves and crystalline angles. I love the patterns in nature, like the symmetrical patterns in the petals of flowers (Dahlias and Gerberas, for example). They just make my eyes feel good and looking at them relaxes me.
Sound is a bit more complicated (volume can be a real issue for me, especially when I’m stressed) but as a musician, I love the details and nuances in music and in sound. I could talk about music for hours but for this, I think I’ll stick to just distinct sounds. I love the sound of thunder, of heavy rain, the rustle of leaves as you walk through them, snow or frost crunching under foot, the crackle of a fire, the sound of typing. I find all of those sounds so soothing. But then there are also noises that really upset me, that can send me into a meltdown even. Metallic sounds, voices low enough that I can’t quite make out what they’re saying, babies crying, sudden loud noises like fireworks or sirens, shouting or raised voices, mechanical sounds (like buzzing or humming, or that high pitched tone/whine)… they all, at the very least, get the hairs on the back of my neck standing up. Oh, and snoring.
Smell is a really tough one for me. The smells I like, I love: most fruits, especially satsumas; the beach and the sea; forests, pine, cut grass; wood fires and the smell in the air after fireworks (a tough one when the sound of fireworks can cause me to have a meltdown). But the smells I don’t like have me scrambling to get as far from them as possible so that I don’t throw up: metallic, rotten, sickly sweet smells and the way they catch in your throat and leave you choking on them. I’m sure there are more, and more specific ones, but that’s all I can think of right now and it’s not exactly the most enjoyable thing to think about.
Taste is another difficult one, given that food is a complete minefield for me. I crave sweet tastes a lot, especially artificially sweet tastes (although I read recently that that is common in unmedicated ADHD), and I like salty things but anything more complicated than that is unpleasant and overwhelming. Even the lowest point on the spice meter is too spicy for me. (And the texture of food is a whole other issue…)
I’m also super sensitive to what I’m touching. There are sensations that I love, like frost or snow crunching under foot, feeling loud music in your body at a concert, fabrics like velvet, the sensation of being in water, the weightlessness of being in water, how your fingers feel against ice, my cats’ fur, my lovely old dog’s ears, and so on. And there are sensations that I hate, that I can’t bear feeling, that I have to wash off in order to think clearly (and sometimes even that isn’t enough): touching something sticky, clammy, metallic, oily or greasy, slimy, powdery or dusty. They make me shudder just thinking about them.
I’m sure I could talk more about sensory stuff but I think I’ll save it for another day or this post is going to get even longer than it’s already bound to be.
Day 11 – Fidgets and Stims
I go through phases with fidget toys: one will satisfy me for a while and then, out of nowhere, it stops doing whatever it is that helps and I move onto another one. Hence why I have a box of them so I can quickly and easily choose a different one. I’m currently fiddling with two: I tend to play with my tangle one-handed (especially when I’m trying to sleep) and I’m also wearing (or at least trying to remember to wear) a necklace made out of a shoelace with a hairband attached. I’m pretty sure my hair-pulling is how I stim but I really don’t want to be pulling my hair out so I’m trying to redirect the urge; this little set up is as close as I can get to the motion of hair pulling and hoping I can move from hair pulling to that and then a movement that doesn’t put so much repetitive strain on my elbow and shoulder.
From left to right, top to bottom: black tangle, black fidget pad, black fidget cube, two sensory glitter tubes, homemade stimming necklace, three blue magnetic spinning rings, silver elephant spinning ring.
Day 12 – Favourite ADHD Charity
I have yet to go looking for ADHD charities, to be honest. I just haven’t had the headspace but there are a few, local ones especially, that I’d like to investigate further when I feel like I can properly commit to it.
Day 13 – Family
I’ve already talked quite a bit about my family, back in the ‘Supports and Appreciation’ prompt. I have four fantastic parents; then there’s my Dad who died when I was 13. I don’t know much (don’t know enough) about him. Finding out who he was and what he was like is an ongoing project. I also have a younger sibling; we were super close as kids and although we’re not as close now, that’s simply as a result of growing up and building our own lives. We still have a great time whenever we can get together. Due to my various disabilities, I live at home with my Mum and our family of cats. I love them all so much and I’m so proud to call them my family.
Day 14 – Order from Chaos
I feel like I’m more mentally chaotic than physically; I’m not the most organised person in the world but I manage pretty well, particularly with help from my Mum. But my thoughts are another matter. Sometimes my thoughts move so fast that I can’t keep hold of them long enough even to figure out what they are; I find those times really scary. Trying to find something to hold on to in the chaos is hard and it’s easy to feel untethered and panicked. Fortunately it isn’t like that all of the time though. I still feel like I have an overwhelming amount of stuff in my head that I’m constantly sorting through.
Day 15 – Everyone Should Know
It’s not that we’re not trying. We are trying. We’re trying so hard. A big part of ADHD is struggling with executive function, mental skills that help us with organisation, planning, start, stay focussed on, and finish tasks, among other things. What some people assume is laziness or lack of care, is actually difficulty with executive function and struggling with these skills can cause those with ADHD great distress. Being told to ‘try harder’ when you’re already trying so hard is not just frustrating but makes you doubt yourself, wonder whether you actually are lazy. This should never be the case. ADHD is a neurodevelopmental disorder (the debate about whether neurodiversity should involve words like disorder or deficit is ongoing and important but too big to get into here); it’s a medical condition. Difficulties with executive function are ‘part of our wiring.’ That’s not to say that it’s fixed, but telling someone to ‘just try harder’ or ‘just focus more’ when their brain doesn’t respond to that kind of motivation is unhelpful and unkind. They’ve probably already thought of that, you know?
Day 16 – Work/School
Education has been a mixed experience for me. I’ve always been incredibly shy and I struggled socially although no one really realised the extent of it, myself included: I learned to mask very well very quickly, long before I knew what masking was, long before I even knew I was doing it. And being a huge perfectionist, I felt a lot of pressure and anxiety around my grades, sometimes to the point where I made myself unwell. Having said that, I’ve achieved some great things academically and while I’ve never had masses of friends, I get on well with people and have a group of close friends that I absolutely adore. So, yeah, it’s been very mixed.
I think it’s fair to say that the undiagnosed ASD and ADHD clearly contributed to the difficulties I’ve had throughout my time in education, which is most of my life really. And I don’t think it helped that I missed the first two and a half years of secondary school (a period of illness that was half-heartedly diagnosed as Chronic Fatigue Syndrome, diagnosed formally in retrospect, and now it may be that it was due to the hEDS – I’m really not sure what to think now), putting me at a disadvantage academically and socially. But what was probably a combination of natural ability, my terrible fear of getting in trouble, and my perfectionism meant that I did relatively well in secondary school. Sixth form and my A Levels were mostly dominated by the strengthening symptoms of my anxiety and depression: I did well in the subjects that I loved but otherwise I struggled. I couldn’t get information to stay in my brain, I couldn’t understand certain concepts as hard as I tried, I felt like I was running an endless obstacle course that only seemed to get harder, and I was constantly exhausted. It all kind of spiralled and I barely managed my exams. I tried to resit several of them the next year but my mental health was so poor (plus whatever was going on with the undiagnosed ASD and ADHD) that I didn’t do any better. Fortunately though, I did have the grades I needed to pursue my BA in songwriting so it all worked out in the end.
University was, obviously, very different from secondary school and sixth form but I didn’t exactly get the same experience as most of my peers. Because of the challenges I live with (my mental health problems weren’t diagnosed until the January of my first year and my ASD wasn’t diagnosed until the summer break between first and second year), I lived at home and commuted to London for university, staying with family when I had two of more days of classes in a row. It was necessary but hard; I was so tired all the time (I was actually taking naps on the sofas at uni at certain points) and it didn’t help the feeling of separate-ness, being so far away and unable to join the spontaneous meet ups and so on. And again, the classes I loved, I absolutely loved but when it came to the classes I didn’t enjoy or found difficult, I really struggled – I still don’t feel like I have a good grasp of music theory (not that I’ve given up). It felt like there were just some things I couldn’t learn, like my brain just wasn’t capable of processing the information (something I’m working on, especially after learning more about ADHD and hearing similar stories from others). And although it wasn’t a constant feeling, I struggled with feeling invisible and feeling like I was never going to be good enough to do the one thing I wanted to do: write and release songs. As amazing as it was to study my very favourite thing and therefore spend most of my time doing it, doing it surrounded by other people who all want the same thing was really challenging at times: you’re constantly exposed to new, amazing music and as cool as that is, if you’re doubting yourself even the slightest bit, that can just make the feeling ten times worse. It’s easy to slip into comparing yourself and seeing all of the ways in which you aren’t as good as this person or that person. So, yes, it was an amazing experience but it was incredibly hard.
The MA was a very different experience (apart from, you know, doing most of it in a global pandemic). The pandemic definitely played a big part: my anxiety was so high, I felt completely overwhelmed by everything that was going on in the world, and I was adjusting to a whole new way of learning (and cowriting). I’m sure those things affected my ability to take in, process, and use new information. I loved the practical part, the constant writing of songs and constant cowriting; I loved that and I feel like I did a lot of my best work so far. But the modules that included extended research and essay writing were a struggle: I found it incredibly difficult to focus on the research I was reading, to digest it enough to pull out the useful information, and then construct the essays themselves. In the first year, my Mum sat with me for hours and hours, helping me to collect all of the relevant information and painstakingly put it together. In the second year, for the final project, I had an excellent supervisor (who is also neurodivergent and therefore had a personal as well as professional understanding of how I’d potentially need to approach things differently), which made a huge difference. I did still struggle though. Staying focussed, attempting to keep my attention from wandering, pulling together all of the information (it was a lot: four-ish months of work that had to be condensed into an hour’s presentation)… it took every drop of energy I had. I was concentrating through sheer force of will and when it was all finally over, I was beyond exhausted.
While I’ve pretty much considered myself a student up to this point, I guess I am self employed: I am dedicated to being a singersongwriter and even though I love it and it started out as a hobby, it’s now my job and one that I want to spend my whole life doing. I’m dedicated to making that happen but it’s freaking hard work sometimes and there are a lot of challenges. I love the creative side and those related decisions often feel very easy, almost instinctive, but the logistical, business, marketing side is really hard for me. For some reason, I find those decisions and tasks much more likely to overwhelm me and money-related tasks are particularly stressful for me (something I’ve seen other people with ADHD talk about). I’ve had some really great help with this up until now and I’m so grateful for that but I would love – so much – to find a way to make this stuff less challenging. So often the level of stress in response to these tasks isn’t proportional and I have to believe that it doesn’t have to be this hard. Now that I’m not studying (although I still have a lot to do), I’m hopeful that I can dedicate some time to this. And I’m cautiously hopeful that the ADHD meds I should be starting in a few weeks will improve things too. As I said, I’m committed to making this happen so I’m doing my best and I have some good people in my corner to support me.
This one has gotten very long so I’ll stop there, I think.
Day 17 – ADHD People I Admire
Kalie Shorr – I’ve been a fan of Kalie’s for years – she’s a fantastic songwriter and performer, she’s super creative, she’s incredibly hardworking, she’s hilarious, she’s a really lovely and genuine person, and she uses her voice for the things that she’s passionate about (always in creative and interesting ways that emphasise her words, of course) – and then, earlier this year, she made a podcast episode about how she’d been diagnosed with ADHD and what she’d learned about herself and certain past experiences in the light of the diagnosis. She described experiences that I really relate to and her positive experience with medication (which she’s been documenting on Twitter – often hilariously, as is her way) has helped me in my own ADHD journey. And as someone who is pursuing the same career path as am I (and is doing so very successfully), it gives me hope that my ADHD isn’t something that will make this path impossible. It might not be easy but it’s not impossible and I’m really grateful to have someone (and someone I think so highly of) remind me of that at this moment in time. (I love this quote from a recent interview: “That’s why I love co-writing as well, I actually think it has a lot to do with… because I love writing by myself and I’ve written some great songs by myself. It’s not that I can’t, it’s that I love the process of co-writing. I think it’s because I have ADHD with the massive dopamine deficiency. The immediate feedback you get when you put out a good line and the people in the room freak out over it, that feels so much better than when I write a good line in a song I wrote by myself and I’m like ‘I think this is good, but I’d rather wait for someone else to tell me that it’s good.’ I get so energized by all these tiny pings about writing a song, and then you get the big hit of dopamine.”)
Emma Watson – I’m somewhat hesitant to include Emma Watson since she hasn’t spoken personally about having ADHD but the information is out there so, if it’s true, I would have to include her in this list. Growing up with Harry Potter, with the characters and the cast, she was always someone I looked up to and I remember an interview where she talked about how her Dad really didn’t have the money to send her to the school he did and how her birthday presents were her uniform and her school supplies and how she worked hard every day (finishing with nine A*s!) because she wanted to make him proud, to show him how much she appreciated it. Of course I’ll probably never be able to completely detach her from Hermione (as I’m sure is the same for many people and probably for her too), it’s been very cool to watch her grow and experiment with different roles and engage in important social issues (I think a good example is this video interview where she talks about finding the constructive criticism in social media, educating herself and broadening her understanding of feminism, the need for the education system in the UK to revise and improve the teaching around Britain’s involvement in foreign affairs (including how the country profited from slavery), transgender issues, and more) while still remaining a very normal, relatable person. She’s achieved so much, she’s pushed her own limits and challenged her comfort zone, and she’s trying to use what she has to make a positive change in the world (despite feeling like she’s still figuring herself and her life out) alongside the challenges of living with ADHD, whatever they are for her, and I find that really inspiring. (x) (x)
Simone Biles – I think it probably goes without saying that Simone Biles’ talent, skill, and incredible work ethic is enough to consider her a person worth admiring. But she’s also repeatedly shown such incredible emotional strength in very difficult circumstances (this year’s Olympics being the most recent example) and has handled them so thoughtfully and gracefully. At the Olympics, even with so many people criticising her for even considering it (and then for doing it), she put her mental health first and stood by that decision. No doubt she made that choice for herself but by making it and talking about it publicly (and talking about it unapologetically, without any shame), she sent such a powerful message that meant so much to so many people, that sometimes you have to prioritise your mental health regardless of the situation and that that is okay. It’s something even the most self aware of us struggle with, even if we understand why we should to do it; it’s a vicious cycle that, often when you’re struggling mentally, it becomes even harder to remember and/or accept that. Seeing someone actually do it, do it under immense pressure, and continue to stand by it after the fact is very powerful and hopefully it will help a lot of people to remember that it is possible, that the world won’t end if they need to stop and take a break from everything. So I can only admire and respect her strength and her willingness to share her experiences because there’s no knowing how many people she’s helping. (x)
I’m sure there are more people I could add to this list but these three are all I can think of at the moment.
Day 18 – Someday…
On a personal level, I can’t help hoping that – someday – I won’t feel so ‘othered’ by being neurodivergent, that I won’t feel so different and so deficient when and after spending time with neurotypical people. It’s not that I don’t enjoy spending time with these people because I do: almost everyone I know is neurotypical and those that I love, I love dearly. But there are throwaway comments and common experiences that just make me feel so different to everyone around me and it’s just so exhausting to have these constant, endless reminders. It’s so hard to try and accept my ASD and my ADHD when it feels like, everywhere I turn, one thing or another is telling me that I’m… less than or wrong or broken. Someday, I’d like not to feel that way.
Day 19 – I love it when…
I can just totally hyperfocus on something without interruption or pressure to do something else. I just love falling down a rabbit hole and reading everything I can find on a subject, learning as much as I can about a particular songwriter’s process, the theories around alternate universes, the different types of typewriters, why thunderstorms make certain people (myself included) feel so much better… I don’t remember it all but I love the feeling of soaking it all in. And it does mean I have a random fact about almost everything.
Day 20 – Communication Style
I’m not really sure what this prompt is asking of me, to be honest. Googling ‘communication styles’ gives me so many different possibilities that it’s hard to know what the right one for this prompt is. Maybe this is something I’m going to have to investigate further but for now, the way I feel I communicate best is through the songs I write. Being able to use lyrics, melody, harmony, instrumentation, production… the right combination of those things can convey a feeling or an experience in such a pure way. Not long after I met one of my now best friends, we were talking about me being autistic (I think it was in the context of a song she was helping me write, I’m not sure now) and I just made the casual comment that if there was ever something that she wanted to know or something she didn’t understand, she could always ask. And she replied, ‘I just have to listen to your songs to understand you.’ I’m not gonna lie, I was kind of floored by that response (and I still am a bit – it makes me very excited about the music projects I’m currently working on). I mean, that’s the goal – to find connection through the songs I write – and my friend had just confirmed that for me. So that was a big moment and a special one but I think I’d still be saying the same thing had that not happened. Songwriting feels like the way I communicate best and to have that in my life is something very special indeed.
Day 21 – One thing other people don’t understand…
From my admittedly limited personal experience, I think a lot of people find it hard to reconcile ADHD with good grades: if you’re turning in work on time and getting good marks, you couldn’t possibly have ADHD, for example. Thinking like this can prevent those struggling from getting support because they don’t show the stereotypical signs of a condition like ADHD. Apart from 2013 (the year when my mental health problems really started to manifest, resulting in such a crisis that I barely made it through my A Level exams), I’ve always turned in work on time or early (unless I had an extension due to health stuff) and achieved high grades in pretty much all of my classes. Personally, I think that, up until A Levels at least, this was largely due to a natural ability, the fact that I enjoyed learning, and very intense perfectionism. Getting to do a BA and MA in songwriting, my most enduring special interest, helped to balance out my struggles with executive function, I think: because I was so passionate about what I was studying (for the most part at least), it wasn’t as hard as it might’ve been had I been studying something that I was less passionate about. I’ve definitely had areas and periods of time in which I’ve struggled – I wouldn’t have sought out what resulted in my ADHD diagnosis if I hadn’t – but I guess I’m just saying that you can have ADHD and be a good student and the idea that you can’t is a harmful one.
Day 22 – Dispel a myth
I don’t know whether this myth still persists but I definitely grew up with the impression that having ADHD meant an inability to sit still. If that myth does still exist, I’m definitely proof that that isn’t true, as a constant of ADHD at least. I can sit in basically the same position all day without moving because I’m so absorbed by what I’m doing. I forget to move, to the point where it’s actually causing me problems: my chronic pain (thanks to my hEDS) is exacerbated by these long periods of no movement so I’m actually trying to move around more. So, yeah, we can sit still.
Day 23 – Can’t live without…
My family. On any and every level, I could not live without them (and I include my close friends in this circle too). But I’ve talked about them quite a lot so I’m gonna say songwriting as well. When I’m writing a song, the rest of the world goes away and I feel like I can just be me, focussed on something that I love more than pretty much anything else. And then, when I finish a song and feel like I’ve really said what I wanted to say, that feeling is so special. I feel like, for a little while at least, I’m in sync with the rest of the world and all of the usual friction that exists just disappears. I feel calm and relaxed, like I’m finally still; usually I feel like I’m constantly vibrating, which is just so exhausting. So, while I love the creative discipline of writing songs, I love the way it makes me feel. I’ve never experienced anything like it.
Day 24 – ADHD Political Issue
A massive problem with conditions like ADHD, as well as other neurodivergencies, is the lack of support available, for those who appear to be functioning well especially. So many individuals, myself included, have had to fight for support – in education, from medical professionals, sometimes from the government – because, so often, people just don’t understand the challenges that these conditions present or don’t believe those asking for help. I can’t get too deeply into this (especially at the moment, given that I’m overly emotional due to the reduction of my antidepressant medication – an unfortunate but necessary step in order to try medication for my ADHD) because I’ll just get too upset but the society we live in is so deeply ableist, and it’s so entrenched that no one even notices. And worse, a lot of people don’t seem to care about changing it. We’re in the minority, right? Why should society change to make the lives of the few better when the lives of the many are just fine? Honestly, the apathy so many people have towards those with disabling conditions (I know not everyone with ADHD considers themselves disabled but some do) – conditions that are often made worse by how our society is structured – makes me so, so angry and just so sad.
Day 25 – Symbols
To be honest, I’m really happy to stick to ribbons of specific colours; I like the simplicity. But I also understand that, at some point, the various colours are going to get too similar and people aren’t going to be able distinguish one from another. But I’m not sure how an entire community will ever be able to agree on one symbol. I’m more familiar with the various Autism symbols but for ADHD, I’ve seen the orange ribbon, the rainbow infinity symbol (which is often used in the autistic community), the butterfly, the rainbow butterfly. Ultimately, I think that what we experience with ADHD is too broad to be summed up with an image like an animal or a symbol because they have their own associations. This is why I like the orange ribbon.
Day 26 – Favourite ADHD Book
I’ve yet to read any books about ADHD, given that I was diagnosed in the middle of my Masters and had to give everything I had to that. Plus I’ve found it hard to focus when reading books over the last few years. But I have had multiple options recommended and I think these are the ones I’m going to look into first…
Day 27 – Identity Language
Personally, I don’t really have an issue with how people identify themselves; they should use the language they feel comfortable with and respect that in others. As a general rule though, I think identity-first language is important for the neurodivergent community. With conditions like Autism or ADHD, they affect the way we perceive and process the world; they are intrinsic to who we are, to our identities. Having said that, I’m not sure how identity-first language works with ADHD. With Autism, we have the word ‘autistic’ but there isn’t an equivalent for ADHD, at least as far as I can tell. I’ve seen people use ‘ADHDer,’ but I find that awfully clumsy and awkward to say. I don’t have any other ideas though.
When it comes to my own circumstances, I am autistic. Absolutely. But I still feel like I ‘have ADHD,’ maybe because it’s still a relatively new diagnosis and I haven’t had the time and headspace to process what it means and how it fits into my constellation of diagnoses and my identity.
Day 28 – Dealing with Boredom
I’m not sure I’m ever bored; I always have too much to do (or I’ve crashed after trying to do too much). The closest state I get to boredom is not knowing what to do and that’s usually because I feel overwhelmed by all of the things I could do. (@roryeckons’ post on this is great though.)
Day 29 – Favourite Memes
I’ve seen a lot of ADHD memes so choosing a favourite or even favourites is hard.
Day 30 – Hyperfocus
I find the concept and research behind hyperfocus really fascinating. I was about a breath away from hyperfocusing on hyperfocus to write this day’s post (when I realised what was happening, I had to laugh) but I managed to reign it in before I really got lost in it. Some of the stories I read were fascinating. Personally, I love it when my brain hyperfocuses, although it can be annoying when I get sucked into something (or repeatedly sucked into one thing and then another and then another) at the exact moment when there’s something I really need to do. But when there isn’t an impending deadline, it can be so fun. I love going down the rabbit hole of a new subject and learning everything I can about it. Sometimes it’s resulted in essays about the subject and sometimes it even turns into a full blown special interest.
Day 31 – Acceptance means…
I don’t know what real acceptance looks like, if I’m completely honest. Yes, we can learn to and practice accepting ourselves and our friends and family can be understanding and supportive but I think acceptance – real acceptance – is bigger than that. Real acceptance is when ADHD is understood, acknowledged for what it is, and accommodated, and done so without persuading or convincing or fighting for it. But I don’t know if that’s a realistic expectation. How can that kind of acceptance be possible when we, neurodivergents, are the proverbial square peg in the round hole, living in a world that is not only built in a way that doesn’t accommodate us but actually disables us further? As I said before, when so many people don’t want the world to change, it can all feel deeply dispiriting. So I don’t know what we do in that regard. But, to quote Amanda Tapping, “The best thing you can do is to make your corner of the world as good as possible,” and so that’s what I think we focus on. We work on accepting ourselves and using the gifts we have to create as much good as possible, for ourselves and for others. Maybe I’m thinking too big when it comes to this prompt but there have just been a number of things recently that have just highlighted how ableist the world can be and that’s been upsetting. And much as it makes me want to flip tables and scream that the world isn’t fair, I want to focus on the good and the good that I can do.
As I said, this is still all very new and it’s a lot to take in. But I do feel like I’ve learned a lot by doing this challenge, both from my research and from reflecting on my own experiences. It’s been a mixed bag – some of it fun, some of it upsetting, and some of it overwhelming – but I’m learning and I’m figuring stuff out and hopefully it won’t be long before I feel a bit more confidant about it and about how I can manage the challenges that come with it.
Who knows, maybe in a year, I’ll do this challenge again and see how much has or hasn’t changed…
Category: about me, adhd, anxiety, autism, depression, diagnosis, emotions, family, favourites, identity, medication, mental health, music, quotes, response, school, special interests, university Tagged: ableism, acceptance, adhd, adhd acceptance month, adhd awareness month, adhd diagnosis, adhd inattentive type, adhd medication, adhd memes, adhd support, anxiety, asd, autism, autism spectrum disorder, autismadhd, autistic, autistic adult, ba, challenge, creativity, degree, depression, eds, ehlers danlos syndrome, emma watson, family, fidget toys, hairpulling, heds, hyperfixation, hyperfocus, hypermobile ehlers danlos syndrome, identity first language, identity language, independent artist, kalie shorr, ma, masters degree, mental health, mental illness, music industry, neurodivergent, neurodiversity, perfectionism, self acceptance, self employed, sensory information, sensory overload, sensory sensitivity, simone biles, singersongwriter, songwriter, songwriting, special interest, special interests, stimming, trichotillomania, university, unsigned artist
Posted on February 20, 2021
It’s a whole new year, a whole new semester… and a whole new lockdown. So I guess it seemed as good a time as any to do another of these week-in-my-life posts. A lot has been going on recently so I thought it might be a good week to document, as much for myself as for anyone else; it’s all been a lot to process and I thought this might help with that.
The week in this post began on Monday 1st February and ended on Sunday 7th February 2021.
I usually like to keep Mondays gentle, given that Tuesday is a long day with my uni classes but this Monday was different. I struggled up (I’m naturally a morning person but between my medication and the pandemic, I’m just tired all the time, which makes getting up in the morning a real battle), had a shower, and managed a bit of breakfast before my first official Occupational Therapy session – I’ve had a consultation but this was the first ‘practical’ session, I guess you could call it.
There were still a lot of questions – all the hows and whens and so ons around the pain in my hands – but the therapist also taught me a series of exercises that I should do daily and how they would help with my pain. She also explained how it all linked in with my hypermobility. So it was really helpful and an encouraging step forward after feeling stuck for so long but despite how little I had to do each day, the exercises caused more pain. I’ve been trying to continue with them as the therapist did say that that could happen but it’s hard to motivate yourself to put yourself through pain. I will have had another appointment by the time this goes up so hopefully I’ll have had some advice on this.
She also had some recommendations on private pools that we could book since swimming is the only real exercise I can do, for the lockdown specifically but also to use until the Hydrotherapy referral comes through. She’d also double checked the Pain Management referral to find that it hadn’t reached the department and so pushed it through personally – apparently, because the pain is impeding my education that puts me further up the list than I might’ve been otherwise. So that was all good but the appointment was pretty exhausting. I actually fell asleep for a couple of hours afterwards.
I woke up suddenly and realised I was ten minutes late for my cowriting session with Richard. That startled me awake, I can tell you that. I scrambled up and logged into Zoom. We had a really good session, finishing a song we’d started the previous week, ‘One More Time.’ I really like it and I’ve been singing it, the chorus especially, ever since we wrote it. It’s one of my favourite songs I/we’ve written recently.
With the demo finished, we talked about the upcoming projects we’re working on, alone and together, for our Masters and for our own projects. That was productive as well, although the creating is always my favourite part of any session.
Several of the cats had been hanging out with me the whole time (I think we were on the call for about four hours in total) and they were being ridiculously adorable. Mouse in particular looked very content with the situation. Having them around all of the time is one of the things that has made this last year bearable; I’m beyond grateful for them.
I was exhausted after that and curled up on the sofa with Criminal Minds. I’ve been rewatching it over the last few weeks and I’d forgotten how much I love it, how much I love the characters; I think Emily Prentiss was one of my first Favourites with a capital F TV show characters.
My mind was wandering and I was thinking about one of my current song ideas, one that hasn’t fully revealed itself to me yet, when the perfect hook popped into my head. Unfortunately, before I could even reach for something in order to record it, it was gone. It was infuriating. I must’ve sat there for an hour, retracing every train of thought I could remember having before the hook occurred to me but alas, I couldn’t get it back. And now, of course, I’m convinced it was the perfect idea: just what I needed to make the song work. So that was very frustrating, which didn’t help with how overwhelmed and stressed I’d been feeling over the previous few days. Part of that was due to the results of the last module being released a few days before. I’m often slow to open results – I like to wait for a moment when I’m feeling stable enough to handle a good or a bad result – but I also had three cowrites and a day of classes in the following days so I didn’t want my emotions about the grade to affect those. That said, I couldn’t forget about them completely and the not knowing was stressful.
Eventually I gave up on trying to conjure back up that perfect hook (*sigh*) and did some writing for the blog. I even managed to finish the post I’d been writing about Lucky. That was a hard one to write so I was glad to have it done.
Mum and I had dinner together and then we had a family video chat, one that specifically included my Granny in Australia because it was her birthday. Since it was a milestone birthday, at the very least some of us would’ve been out there to celebrate with her if not for the pandemic, something that’s been hard for all of us but especially the one of my four parents who’s her daughter. So it was hard, but having a video chat was better than nothing and I think we made the most of it.
After we hung up, Mum and I had a gentle evening, continuing with our Criminal Minds rewatch. I also tried to do some catching up with my diary. I’m so far behind now that it’s more like keeping up: I’m just barely managing to keep bullet points as prompts for some imaginary moment in the future when I have the time to go back and write it all out. I’m finding that incredibly stressful because the need to write everything down is only being partially fulfilled, leaving me with so much anxiety that sometimes I’m left feeling suffocated. But that anxiety is constantly battling with the anxieties of other things that HAVE to get done, like my Masters work. There just aren’t enough hours in the day. Plus, a lot of the time, I feel like my brain is wading through treacle, making it even harder to function. My brain feels a bit like it’s been hit by a hurricane; it’s just a chaotic mess and nothing’s where it’s supposed to be or doing what it’s supposed to do.
I went to bed early-ish, early for me anyway, but then I accidentally stayed up for several hours, watching videos on YouTube. One of the upcoming writing briefs for this module is to write a song based on a fictional story and I’ve wanted to write a song about Daisy Johnson from Agents of SHIELD forever so this seems like a good opportunity; maybe a deadline is what I need to make it happen. So watching all of these Daisy Johnson videos on YouTube and listening to the songs that people associate with her is research of sorts. I’m still trying to work out the perspective I want to write the song from, whether it’s about a particular moment in time, or about her emotional journey, but I found several songs that definitely have potential as inspiration. It didn’t exactly help my brain wind down though.
I managed to sleep through all of my alarms, which meant that I was almost an hour behind in getting ready for the day – my uni classes day. So I had one of the fastest showers of my life, put on minimum make up, and inhaled some breakfast, logging on just in time for my first class. Definitely not the most fun or graceful start to a day.
My first class of the day was our workshop, where we present the songs we’ve written based on the techniques we learned in the seminar the previous week. Due to a meltdown, I’d actually missed the seminar, which had been on the techniques of song maps and pyramiding, but after reading the resources and a long discussion with one of my friends who’d been at the seminar, I felt I understood the theory enough to at least attempt to apply it. I’d written one song with Richard and another with one of my coursemates, both of which I really loved. There was only time for one of them, given how many people had brought songs (some days, everyone brings a song and we have to be really efficient whereas on others days, some people haven’t brought a song and there’s more time and people can present both cowrites and songs for their own projects), and the cowrite with my coursemate got chosen. It was well received with a healthy amount of suggestions for improvement, some of which we agreed with and some we didn’t. We’re planning to work on it again soon, since one of the upcoming briefs is to redraft a song.
There were some other really cool songs played during the session but I don’t want to say too much about them since they’re part of other people’s projects. Having said that, my group is packed full of amazing writers so whenever they release music, I’ll be sure to share it on my social media. So check those out if you want to hear about these awesome up and coming artists and writers…
It was a good class but then we had a four hour break before the seminar in the afternoon, starting at 4pm. Tuesdays are hard for me: they’re long and they require a lot of energy and focus, especially the three hour seminar. So I’ve taken to using the break to have a nap to recharge for that class. I slept for almost three hours, had some food, and quickly recapped the notes from the last seminar before we got started again.
We began by discussing what we’d worked on over the previous week – song mapping and pyramiding – and talked about how we’d implemented songs maps into our work, what impact it had had on our writing process, and what we’d struggled with. Having missed the seminar where song maps had been introduced, I’d struggled initially but having incorporated it in the writing of several songs, I do feel like I’m getting more of a feel for it. We had some interesting (and, at points, entertaining) debates over various elements before moving into the new topic: different approaches to cowriting. In groups, we were encouraged to just talk until one of us said something that might make an interesting song and then start writing that song together.
I’d initially been worried about being dropped into a group of people I didn’t know and asked to create something so I’d spoken to my tutor and we’d worked out a solution that I’d be in a group with at least one person I knew. I’m always keen to write with new people but, being autistic, it’s a lot easier and a much more positive and productive experience if I have, at the very least, spoken to them beforehand. So having one person I already knew just created a safety net in case I got overwhelmed or something. I actually knew two people in my group and then there was another guy I hadn’t previously met; we got on really well with lots of laughing and goofing around but we also came up with a really strong concept and started working on the song. So we did pretty well, I think.
When the class ended, at 7pm, I was exhausted but the nap had helped. I wasn’t completely floored like I often am. I even managed to work on a song I’m currently writing, one called, ‘Astronaut.’ I’m usually barely capable of eating dinner and catching up with my diary so that was quite an achievement. The nap had clearly worked wonders.
There wasn’t much left of the evening but my Mum and I had dinner and continued our Criminal Minds rewatch. I also worked on a couple of blog posts before going to bed far too late, as is my norm at the moment. I just get this weird anxiety when I start getting ready for bed. Maybe it’s to do with anxiety about being unable to sleep, maybe it’s anxiety about a period of unproductive time (that’s something I’m struggling with at the moment)… I don’t know. And it just makes it even harder to get to sleep.
It took me a long time to wake up on Wednesday morning; I just couldn’t open my eyes. I feel like I’m having more and more trouble with mornings; my antidepressants are very sedating, which is one of the reasons I’ve been thinking a lot about trying a new medication. It’s just such a tough process and there never seems to be a good time.
When I eventually managed to keep my eyes open for longer than a minute, I forced myself up and had a shower before settling at my desk in the living room. With Criminal Minds as a backdrop, I spent several hours working on blog posts. I struggled to concentrate though because, in the back of my mind, I was aware of the fact that last module’s grades were still waiting to be opened. They’d come out the week before but I’d had three cowrites and a day of classes ahead of me and if the grades were bad, I didn’t know how I’d manage to be present and productive in those sessions. So they were still sitting there, unopened, and I was very aware that I really should open them and look. But it was really hard to make myself do it.
Eventually I did, when Mum went out to do the food shop. It’s not that I didn’t want her to know or anything; I just find it easier to see results, have my initial emotional reaction in private, and process it a bit before sharing the news with people. I was happy with the grade – for the most part (but then I’m a perfectionist and always somewhat disappointed if I don’t do exceptionally, something I think is an unfortunate consequence of being a really high achiever at a young age) – but I did have some issues with the feedback. Reading through the feedback sections, I felt like we hadn’t been assessed on what we’d been told we’d be assessed on. The more I thought about it, the more upset I got. I’d worked so hard and talked to the tutors so many times in order to get a clear pictures of the module and how it was assessed and then to see feedback that felt fairly unrelated to what I’d been told was actually really distressing. I guess I felt (and feel) like I would’ve done things differently if I’d known the type of feedback the work would receive. I’d worked so hard on my assessment submissions so that was just quite deflating.
I talked about it a lot with my Mum and after that, I was just exhausted. So I put on some Criminal Minds and spent most of the day working on blog posts. Or trying to, at least. Wednesdays are always my least productive days, like my brain and body borrow from Wednesday to get through Tuesday, leaving Wednesdays significantly depleted of… just everything. So I always try to avoid putting anything important on a Wednesday.
So a gentle afternoon turned into a gentle evening, watching Criminal Minds and writing for the blog in front of the fire. The cats love it when we have a fire. They all congregate in the living room and spread out in front of it, occasionally rolling over – ever so casually – to warm a different side of their bodies. It’s adorable.
I managed to go to bed at a reasonable time, watched some more Daisy Johnson videos, and was actually asleep before midnight.
I had to get up painfully early to go to the dentist (my dentist is a safety hub, which apparently means they can be open during lockdowns because they look after people with disabilities, although I didn’t know this until fairly recently), which wasn’t a pleasant experience. They have really strict safety procedures (the only reason that I feel safe going there), like an hour between each patient to sterilise the room and so on, so it takes a long time to get an appointment. Unaware of the fact that I could go to my dentist until a few months ago, it’d been a long time since I’d had a check up and so there was quite a lot to do. I’m not gonna go into detail because I don’t think anyone enjoys descriptions of dental work but it was a difficult experience, moreso than usual. I find the noises of the machines particularly difficult and in excess, they get dangerously close to triggering a meltdown, so by the time the appointment was finished, I was completely exhausted.
Back home, I finally managed to get through the Occupational Therapy paperwork and start doing the exercises for the pain in my hands and wrists. Despite the simplicity of the movements, it was hard work and every joint from my fingertips to my elbows hurt afterwards. I made a note of it to report back to the therapist – I had another appointment in a week – and took some painkillers that eventually took the edge off.
It wasn’t long before my next appointment, by phone this time with the Chronic Fatigue Service, so I lay on the sofa and watched Criminal Minds for a little bit while I recharged and gathered my thoughts for the call. I was already apprehensive about the call as it was a doctor I’d previously had a really bad experience with – one I’m tempted to go as far as saying was traumatic. It was a long time ago now but I was still anxious about the whole thing.
It turned out to be exhausting, upsetting, and a complete waste of time. He had very little of my history so most of the hour was spent taking a very extensive history, involving questions ranging from my parents health to my diet to my mental health diagnoses to my medication. And after all of that, he basically said that my case was too complicated for them, that with the more recent diagnoses – including the hypermobility diagnosis – I was better off with my current specialist. What may have previously been perceived to be Chronic Fatigue Syndrome might actually be Persistent Fatigue associated with hypermobility but it’s hard to be sure. But not only did we hang up with less clarity than when we started the call, the whole thing was just… unpleasant and awful; he claimed that I’d been diagnosed with CFS in 2007 by a doctor I don’t even remember seeing according to a letter that neither my Mum nor I remember getting; he was critical of how much Red Bull I drink (due to the sedating effect of my medication as far as I can tell) and acted like I was doing it for fun, not because it’s the only thing that keeps me awake and functioning; he talked about a set of blood tests that were never discussed with us, which was particularly alarming as one of the results could’ve indicated cancer… And on and on. It was a complete fiasco. Every time I think things can’t get worse with doctors, they do. I could’ve had cancer and no one ever even bothered to mention it. I mean… I don’t have any words.
So that was basically the day written off. I was just too distressed and too exhausted. There was an extracurricular uni session in the evening but I was just too tired. I knew I wouldn’t be able to focus and it would be recorded so I could always catch up later. Instead I spent the evening watching Criminal Minds and very, very slowly adding to some blog posts. I did get some exciting music news but unfortunately I can’t share that yet. So the day did end on a better note.
There’s no particular reason to include this picture other than the fact that I thought it was adorable: cat yoga on a piano.
I went to bed early, watched a few more Daisy Johnson videos (at the moment it feels like the only time I feel able to take the time to watch YouTube videos is right before bed or before I get up in the morning), and eventually went to sleep.
I got to sleep in a little bit and then it was up and out to the hospital for an ECG (echocardiogram). Since a small amount of people with hypermobility develop heart problems, I’ll have to have ECGs every five years or so to make sure everything’s okay. I wasn’t too worried about it but again, it was another distressing medical experience.
I’ve had an electrocardiogram before and just like that, you’re asked to undress so that the ultrasound wand can get a good image of every necessary angle of your heart. But I just couldn’t do that: the idea of being so exposed in front of people I didn’t know was and is nightmarish to me. I don’t know if that’s an ASD thing or or me thing or what. They looked at me for what felt like ages before reluctantly allowing me to keep my bra on, telling me that they likely wouldn’t get as good images. I was trying not to lose it completely so, as you can imagine, that was a super helpful comment. And then, to make matters worse, the doctor pressed the wand against my chest so hard that it physically hurt; part of me wondered whether it was a punishment for being ‘difficult.’ I couldn’t breathe properly and it hurt so much that I was almost crying, especially when she pressed it against my sternum.
When it was finally over, my Mum asked if they’d gotten what they needed and they said that they had. So much for my bra being an issue. When I was fully dressed, Mum asked me to wait outside; she was five minutes maybe and then we were out of there. She told me that she’d just done what she normally ends up needing to do with medical professionals and explain how important the language they use with autistic patients is (because, as usual, they didn’t know how to work with an autistic individual). So, for example, instead of saying they probably wouldn’t get the pictures and therefore making me feel guilty for my anxieties, they could’ve said that they could try and then, if they couldn’t get the pictures, we could all re-evaluate together, which would’ve made me feel like they were at least trying to work with me rather than dismissing my difficulties. Apparently they thanked her for sharing her experience and said that they would take it on board; whether they will, I can’t say.
The whole experience had been distressing and exhausting and I was barely holding it together. I just wanted to get home and curl up under a blanket in the safe little bubble that is my living room, curtains closed and fairy lights on. So that’s what I did. I attempted some blog writing but it was very half hearted; I was just really drained by the experience at the hospital.
Early afternoon, I had a therapy session. It was probably too much on top of the ECG experience but then I hadn’t expected that to be so dramatic and emotional. Again, I’m drawn towards the word traumatic but I guess I’m reluctant to call it that as just a person and not a mental health professional. Had it just been the one time, I wouldn’t think to call it a trauma – I’d call it distressing or deeply upsetting – but as the latest in a long line of deeply distressing experiences at the hands of medical professionals or in medical settings, it feels like it’s bigger than that, that those experiences have built up to create a big ball of trauma.
It wasn’t easy but somehow I managed to pull myself together enough for my therapy session. A lot had happened since my last session so there was a lot of catching up and processing, most especially about the medical stuff that’s been going on. It was really hard, both in the sense that it took a lot of energy to talk about it all and in that it kicked up a lot of emotions. It’s weird: it’s like I’ve been boxing it all up and hiding it under the bed for years and suddenly, the recent appointments have just kicked the lid off and I can’t get it all back in, like when you have to sit on a suitcase in order to zip it closed. So now all those emotions are just everywhere and I can’t move without tripping over one or another of them.
We finished up the session but I knew that if I stopped, I was really going to crash so I did some prep work for a cowrite I had the next day; I really don’t like going into cowrites without anything prepared, even if it’s just a list of relevant words or phrases. Since we ended up writing about something completely different, I think it’s probably fine to talk about the song we were planning to write: we’d been talking about our personal concepts of time and how time feels different since the pandemic began. So that was our concept but we needed to refine it so that it would work in song form. So I spent some time looking up interesting words in the thesaurus, searching for inspiration on quote websites, and free writing about how I’ve been feeling over the last year in relation to time. There were a few quotes that I loved and could’ve drawn inspiration from if we hadn’t jumped ship and worked on a different idea:
I thought those three quotes in particular were beautiful. I could write a song based on each one.
Late afternoon, I logged into Microsoft Teams for our group cowrite – a session to finish the song we’d started during Tuesday’s seminar. We’d already written most of the song but we kept writing and refining. We had a really good time together but we did talk about whether four people were necessarily needed for the first draft of a song. Having said that, I think everyone contributed in their own ways and the song wouldn’t be what it is without all four of us. We ended up being on the call for over two hours before deciding to call it a day. I was a bit frustrated to leave it unfinished again but I think that’s just coming from my issues with productivity; I hate leaving things incomplete. I was still staring at the Google Doc when I had a spark of inspiration and jotted down a full bridge to look at next time. I thought it worked well so I was hopeful that the others would like it too.
Less than ten minutes later, one of my parents (who doesn’t live with us but is in our support bubble) arrived. We try to have an evening a week where we just hang out together and have some real human interaction. We treated ourselves to an Indian takeaway and caught up while we waited for it and then watched a couple of episodes of Lucifer, the show we’re currently watching together. It was very chilled out and I was practically asleep on the sofa when she got up to leave.
Mum and I watched a couple of episodes of Criminal Minds before going to bed and I watched a few more Daisy Johnson YouTube videos. This is one of my favourites so far:
It’s one of several that are sort of building a sonic picture in my mind as I put this song together. Yeah, I’m trying to work out how to write my own Daisy Johnson song but I’m also realising that it’s a form of procrastination too. When I lie down at night, my thoughts start to spiral and the spiral gets tighter and tighter until I can’t think or breathe. I definitely can’t relax enough to sleep. I’ve tried all of my strategies but they don’t seem to be working so I’ve been seeing the early hours of the morning a lot more often recently.
After going to sleep so late, I slept in, hours and hours later than usual. I missed almost half of the day, which was very disconcerting. And even awake, I couldn’t summon the energy to get up for a while so I scrolled through Twitter on my phone. I’ve recently gotten into #ActuallyAutistic Twitter (I knew it existed but hadn’t spent much time looking at it) but I’m still not entirely sure how I feel about it: some of the people on there are really lovely and share valuable tips and information but I’ve also seen some pretty intense debates that make me feel quite anxious, like it wouldn’t be safe to express my opinions or experiences without someone judging me or telling me how [insert word here] I am. So it’s a mixed bag and I’m not sure whether or not engaging with it is good for my mental health, right now at least.
Eventually, at about half twelve, I dragged myself up and into the shower. The points where they’d pressed the ultrasound wand were really tender and painful. There wasn’t any bruising but they hurt to touch.
Shower done, I settled in the living room. Sooty immediately hopped up for cuddles and ended up spending most of the day tucked up against me in one position or another. It was very cute and very soothing.
With so many big posts coming up, I decided to post a short, less intense post, editing and posting another Little Things post. It’s true what I write in those posts: I do want those of you who read my blog to know who I am as a full person, not just a Picasso painting made up of the specific parts I talk about in any given blog post. That’s part of why I write these posts too.
When that was finished and posted, I did some admin stuff, mostly emails: some music stuff, plus some messages around my long term project of tracing my family history (that’s a story for another post). I also continued my attempts at redrafting the lyrics of ‘One More Time’ but I was still struggling to get it right. It was going to be super satisfying when I finally hit the right combination of words but until then, it was somewhere between a really complicated Rubik’s Cube and banging my head against a wall.
Eventually it was just getting too disheartening so I took a break. I went to Tumblr as I often do for inspiration and while I didn’t find anything to help with this song, I did find some cool art, some interesting lyric analysis, and some beautiful gifsets from several of my favourite TV shows. At the very least, it released some of the tension in my brain.
It was an evening of Criminal Minds, dinner, and my physio exercises. Oh, and a further attempt at redrafting ‘One More Time,’ but still no dice. It’ll get there at some point; I just don’t know when. My brain just feels really overloaded and overwhelmed at the moment and that makes it really hard to think when I get stressed or anxious. And it just snowballs, everything getting worse and worse until I feel like I’m so twisted up in this net of my own thoughts that I can’t move, can’t think clearly. It’s exhausting and yet, sleep is such a struggle.
I really struggled to wake up but eventually I managed to drag myself into the shower and then the living room. One of the cats, Tiger, immediately sought me out for attention and paced relentlessly until I gave in and devoted all of my attention to her. The cats are all getting far too used to us being around all of the time…
Late morning, I had a FaceTime call with a friend that went on for over an hour. That was really nice and we had a good laugh, which I really needed after the week it had been. It gave me a much appreciated boost, which was only heightened by the flurries of snow outside. That was very exciting and when I went downstairs after the call ended, I got to enjoy watching the cats in the garden, watch their befuddlement at the snow: the little shakes when it landed on them, the pouncing on the settling snowflakes… It was incredibly adorable.
Back upstairs, I did a bit more thinking and searching for inspiration – in my various songwriting notes, in my diaries, on Tumblr – for my upcoming cowrite and I worked on that until it was time for the video call, about an hour later.
I think it was a good session, especially for a first time cowrite. It was with another of my coursemates and while she and I have known each other a while now, we hadn’t managed to write together up to this point. We had a good time and laughed a lot while still managing to write most of a really promising song in about ninety minutes. So I feel like we did well. I like the song and I like the message behind it; hopefully we can finish it sometime in the near future.
So I finished the session in a really good mood, that is until I saw that Sia’s dangerous, offensive, and incredibly ableist and problematic film, Music has been nominated for two Golden Globes. I was – I am – disgusted and appalled by how little so many people – in this case, the film industry – care about the wellbeing, the opinions, and the happiness of the autistic community. It’s horrifying. It makes me want to scream at someone but there’s no one to scream at. Put me in front of the Golden Globes people and I’d rip them a new one but that’s not gonna happen, not in this reality anyway.
can someone pls with a bigger platform talk about the fact that the golden globes nominated music, sia’s horrifically ableist movie, twice?? and the implications of that for autistic people ?
— maisie (@maiisiesh) February 3, 2021
Sia's 'Music' is a possible Golden Globe winner.
The film glorifies physical harm & inspiration porn for neurotypicals & a neurotypical was cast for a non-speaking autistic role.
Sia's response to #ActuallyAutistic critique with abuse.
Spread word: #NoGoldenGlobeForMusic
— Mx. Charis Hill ♿ (they/them) (@BeingCharisBlog) February 4, 2021
— Lauren Alex Hooper (@laurenahooper) February 7, 2021
Not sorry enough to pull the movie. Not sorry enough to reject the award nomination. Not sorry enough to leave her apology up on Twitter. Not sorry enough to reach out to the people she directly insulted. Not sorry enough to tell her fans to leave #ActuallyAutistic people alone. https://t.co/8zuYKvVqGM
— Julie Atwood (@jmatwood) February 7, 2021
– because Sias movie „Music“ portrays traumatic, deadly prone restraint as the appropriate response to autistic meltdowns.
– because „Music“ erases & harms autistic people, especially non-speakers.
— autistictic (@autistictic) February 3, 2021
I did my best to have a quiet evening since I had another busy day ahead of me but I couldn’t shake off all the unpleasant feelings around Sia’s film. I tried to distract myself and work on ‘One More Time’ but I just couldn’t focus. I was too emotional, too overwhelmed. I wouldn’t have been surprised if I’d spiralled into a meltdown, if not for the fact that I was too tired to even cry.
In the end, my Mum and I watched some more Criminal Minds while she gave me a neck and shoulder massage (one of her many lives was as a massage therapist). The pain is creeping higher and higher, up my neck and into the base of my skull so although it wasn’t the most comfortable experience, I felt better for having it. Less tension, less pain. Some of the time, at least.
Again, getting to sleep wasn’t easy but it was a better night than others so I’m grateful for that. I’ll take whatever I can get right now. I’m waiting on various things that will potentially help but everything’s moving very slowly. My logical brain is very understanding, given everything with the pandemic, but my emotional brain is less rational, struggling to cope with the pain and the anxiety and the lack of sleep. As human beings, we are more than capable of holding two such opposing emotional responses but it being possible and it being easy aren’t the same thing, are they?
Somehow that ended up being a lot longer than I’d planned, than I’d expected it to be. But apparently there was a lot of stuff in my head that was intent on getting out. Life feels pretty complicated at the moment.
Category: about me, animals, anxiety, autism, chronic fatigue, covid-19 pandemic, depression, diagnosis, emotions, meltdowns, mental health, music, quotes, sleep, therapy, treatment, university, video, writing Tagged: 2021, a week in my life, ableism, actuallyautistic, actuallyautistic twitter, agents of shield, antidepressants, anxiety, anxiety disorder, asd, assessments, autism, autism spectrum disorder, autistic, autistic adult, autistic student, birthday, blog, blog writing, cats, cfs, chronic fatigue, chronic fatigue service, chronic pain, compulsive writing, coronavirus, covid-19, cowriting, cowriting session, criminal minds, daisy johnson, demo, dentist, diary, diary writing, drowsiness, ecg, echocardiogram, emily prentiss, family, family history, family of cats, feedback, friend, golden globes, grades, grandparent, granny, hydrotherapy, hypermobility, hypermobility diagnosis, lockdown, lockdown 3.0, lucifer, massage, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical trauma, medical treatment, medication, meltdown, music film, my cats, occupational therapy, pain, pain management referral, pandemic, pandemic 2020, part time masters student, part time student, persistent fatigue, pyramiding, quote, quotes, remote therapy, remote writing session, richard marc, richard marc music, richard sanderson, seminar, sensory overload, sia, sleep, snow, song mapping, song maps, songwriter, songwriters, songwriting, songwriting inspiration, support bubble, swimming, therapy, trauma, tumblr, twitter, university, video, videocall, week in my life
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.