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 September 12, 2021
And that’s that. I’ve finished the final module of my Masters and therefore the Masters itself. I don’t know what my grade is for the module or for the whole course yet but frankly, I’ve got a lot to process before I can even really think about the grades and graduation.
Looking back at a similar post before the module started, I was excited about the project but nervous about my health, mental and physical, and whether it would prevent me from doing everything I needed to do, from being able to enjoy the process. And those were valid concerns so I thought, having written a post about how I was feeling before the module started, I’d write another now that it’s ended – like bookends.
A lot has happened since the beginning of May.
Over the last four months, I’ve spent almost every day working on my final project, researching, writing songs, and working on the production of an album. It’s been incredibly intense and now that it’s all done, I’m utterly exhausted, both mind and body. And while, for the most part, I loved it, it’s also a relief to be free of some of the anxiety around it (I’m still struggling with my anxiety around the grade). Having said that, I feel strangely lost and untethered now that I don’t have this big thing to focus on. I know that I need a break but I am looking forward to the next project, whatever that may be. I’m always happier when I’m doing things.
My mental health was pretty good for most of the module, surprisingly so. By my standards at least. I think that the constant creating and the creating of stuff I’m proud of really helped. I had one particularly bad episode of depression, plus a handful of smaller ones, and my anxiety was pretty constant but that’s normal for me. It got very bad in the last month, which was hard to manage – trying not to let it destabilise me was a bit of a battle in itself. It hasn’t quite faded yet. For various reasons, I didn’t have any access to my therapist, which was an unforeseen difficulty and that made things a lot harder than I’d expected them to be.
I also really struggled with my concentration. I’m still not getting any support for my ADHD (something that I hope will change soon but I’m still so frustrated that I couldn’t get any help with it during my Masters) so staying focussed on my project, on my research, took all of my energy. It was exhausting. I felt like my concentration was so, so fragile that a single moment of distraction would break it and then it would be impossible or would take days or even weeks to get back. So I couldn’t stop. Not for anything. That was very stressful and resulted in many, many long days. Sometimes I’d work all day without moving (not healthy, I know) and end up going to bed very late. And then, of course, I couldn’t sleep because my thoughts were racing. So it did a number on my sleep schedule too; I’m surprised I’m not nocturnal at this point.
That, plus the general fatigue I deal with day to day, meant I was tired all of the time. I’ve drunk an obscene amount of Red Bull (my antidepressants make me really drowsy, just to make things even more difficult, although I may be changing medications soon, which hopefully won’t have the same side effects) – I am beyond sick of the taste of it. But it got me through and I’m grateful for that. I will however be grateful to never drink it again (hopefully). And I’m really looking forward to getting both some proper sleep and some proper rest now that my work is done.
I also mentioned back in June that I’d been having migraines that seemed to be being caused by an abscess in one of my teeth. Since then, I’ve been on antibiotics twice, continued to have migraines, and am still waiting to have the tooth removed, a decision that was made at the appointment in June. Given how much disruption it was causing though, I did get extenuating circumstances which allowed me some extra time (although it wasn’t really extra since it was making up for time lost to a medical problem) to cope with those problems. It’s not bothering me presently which is a relief but I’m more than ready for them to take the tooth out, just so that they’re not even problems I have to think about.
While I managed to keep swimming twice a week – a routine I’ve been trying to maintain to create a solid foundation for my crappy joints – I was in almost constant pain throughout the module. At times, my right knee was so painful that I couldn’t walk on it and my back has been consistently painful; my Mum, who used to be a massage therapist, said it felt like trying to massage rocks and now that it’s all over and I’m trying to relax, the muscles feel like their made of concrete. Which is about as pleasant as it sounds. I’ve also had great trouble with my hands and wrists what with all the typing I’ve been doing. So, all in all, I’ve been a bit of a mess. I haven’t had any support for this – the hEDS – either; I’ve been waiting for physiotherapy and hydrotherapy since December 2020 officially and May 2020 unofficially. I’ve just had to try and get by on various painkillers, none of which have been all that effective.
Despite working practically non-stop, I got everything for my project done just in time for my final presentation. My assessors were positive, which I’m trying to hold on to in the wake of my anxiety around the final grade. I’ve been really trying not to attach my self worth to my grades (something I’ve always really struggled with), or at least, lessen the power my grades have over me but I can’t help the fact that I really want to do well. I’ve worked so hard – with so many obstacles – and the idea that that still wasn’t enough to get a Distinction would be upsetting. I’d get over it but it would still be upsetting. I never want someone thinking, “Oh, she mustn’t have worked hard enough.” Or worse: I never want to think, “Oh, I would’ve gotten a distinction if I wasn’t autistic or had ADHD or whatever” thoughts left over from my late diagnoses and the resulting difficulty I have in setting standards and goals for myself (more on that in another post). This anxiety isn’t helped by the fact that I keep thinking of things that I should’ve included in my presentation. My brain clearly hasn’t quite processed that the module is over.
And then, just when I thought I could relax, the world tipped under my feet. The next morning, my Mum told me that my Granny had died a few days earlier. She was ninety-three. Having barely started to process the end of my two year Masters and intense final project, this news was just too much for my brain. A few days on, I feel like I’m bouncing pretty erratically between two states, the first being this weird bubble where nothing can touch me and the second being, ‘if I stop thinking or talking or moving for even a second, I’m going to completely fall apart.’ It’s surreal and exhausting and sad. I’d like to write a piece about her at some point because she was such an incredible woman but I can’t really write more than this right now but it felt really important to at least acknowledge what’s happened because it’s so big and so important.
I don’t think there’s anything else to say right now. I’ve barely been able to wrap my head around this last week: my final presentation, the ending of the Masters, Granny, and everything that’s ahead given all of these things. It’s a lot to take in; I’m exhausted. I’m just taking it day by day.
Category: adhd, anxiety, autism, covid-19 pandemic, death, depression, emotions, family, heds, medication, mental health, music, research, sleep, therapy, university, writing Tagged: actuallyadhd, actuallyautistic, adhd, adhd inattentive type, adhd support, album, antibiotics, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic student, break, concentration, death, depressed, depression, drowsiness, drowsy, eds, ehlers danlos syndrome, exhaustion, extenuating circumstances, fatigue, final project, focus, generalised anxiety disorder, grades, grandmother, grandparent, granny, grief, heds, hypermobile ehlers danlos syndrome, hypermobility, identity, inattentive type, late diagnosis, loss, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, mental health break, mental health update, mental illness, migraine, migraines, new album, new music, part time masters student, processing, recovery time, red bull, rest, self worth, side effects, singer, singersongwriter, singersongwriter life, sleep, sleepiness, sleepy, songwriter, songwriting, therapist, therapy, tired, tooth extraction, tooth pain, writing
Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university
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.