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 December 31, 2021
I’m not really sure how to sum up this year. It has been one of extremes, to say the least: anxiety, joy, stress, excitement, depression… And, at this point, I feel a bit like I’ve run out of capacity. For anything. So this was a hard post to write and it wasn’t helped by the dichotomy between most of the year and the last few months; I’ve found it very hard to look at each part without the other colouring it in some way.
The biggest part of my year was most definitely the final two modules of my Masters, which turned out to be my two favourite modules of the course, The Writer’s Voice and Major Repertoire Project. Having written about these already, I don’t want to repeat myself but I do want to look at them in the context of the year. From January to September, I wrote furiously and with such joy. There was anxiety and depression and stress – they were all in there – but it felt like all of that writing balanced the scales. I wrote so many songs that I love, that I’m so proud of, and that I can’t wait to release. While I did release new music this year – The Honest EP (Sunburst Sessions) – they weren’t new songs and I’m so excited to share new songs. I have lots of plans that I’m really excited about and despite the chaos of the last few months, I have been working on my next project. I’m very excited to share it in the new year.
I’m very proud of myself for completing the Masters, especially given that I did most of it during the pandemic, and I’m so proud of my final project; it is the best thing I’ve ever done and I can’t wait to get it out into the world. I poured everything I had into that project so getting such a high grade and then the Outstanding Student Award at Graduation felt really good. I feel weird talking about it but I am really proud of that achievement and the recognition of how hard I worked means a lot to me. Because of an administrative screw up, I’m not sure when my graduation will be official, when I’ll get my certificate – something that caused a lot of distress – but practically, it’s done.
My health, both physical and mental, hasn’t been in great shape this year. The chronic pain was really bad, the fatigue not much better, and the ongoing migraines are pretty miserable. My mental health was fairly stable and actually not too bad for the most part, until the last few months of the year. Then it got really bad. In order to try medication for my ADHD, I had to come off Phenelzine – the only medication that’s ever helped me – and then start Xaggitin. That went extremely badly. My depression all but overwhelmed me; it was the worst my mental health has ever been. I’ve stopped taking the Xaggitin and I’m taking Bupropion now and it’s different but I’m not sure if it’s any better though.
I’ve felt very alone this year, in regards to tackling and managing all of this. I came out of every appointment feeling angry, distressed, dismissed, or invalidated (and often multiple of these in various combinations). I haven’t felt safe with any of them; I didn’t feel like my existence even registered with them. So I’m finding all of that very hard and each new appointment is preceded by extreme anxiety, a kind of anxiety I’ve rarely experienced. It’s a bit like a fight or flight response. I’ve never had a great relationship with the medical profession but I’ve felt particularly let down this year. I have finally managed to get back to therapy (although this was before the newest variant threw a wrench in all of our plans) but it’s been a long time and a lot of stuff has happened; I feel like I’m having to learn how to do it all over again.
It’s also been a hard year, family wise. I haven’t been able to see one of my parents – in real life – since before the pandemic (for medical reasons) and that has been so hard. We talk on FaceTime and stuff and that’s good but I still miss her so much. And then, of course, my Granny died in September, just as I was finishing my Masters. At that point, I think, my brain just couldn’t take anymore; I don’t think I’ve processed any of it, to be honest. To a certain extent, I feel frozen, like I stopped while everything around me kept going. It’s not the first time I’ve felt like this but that doesn’t make it any easier. I’m sure all of those feelings will make their presence felt in the new year. But as hard as all of that is, I’m so grateful for the friends and family around me; I’m not sure where I’d be without them.
“What a surreal year. I don’t even know how to sum it up really. Everything I felt, I felt in extremes: stress, anxiety, depression, joy, excitement. I wrote songs that I’m so proud of, I hugged friends I hadn’t seen in months, I completed a Masters degree that I loved. I struggled with even more health issues, I was almost overwhelmed by the worst depression I’ve ever experienced, and I’m learning to live in a world that doesn’t have my Granny in it. The high points were so high and the low points were so low and I’m honestly exhausted right now. This year has been more than I know how to handle and I’m still kind of drowning but I’m also still here.” (x)
This end of year post isn’t quite the same as what I’ve done in previous years but it’s been a weird year and I wouldn’t be surprised if I’m experiencing some form of burnout. I have a few plans but honestly, I have no idea what the next period of my life looks like and that’s scary. I hate how my life goes on hold whenever I change medications and I feel more than a bit lost right now. All I can do is wait and see and after all these years, there’s very little I hate more.
Category: adhd, anxiety, autism, covid-19 pandemic, death, depression, emotions, family, heds, medication, mental health, music, treatment, university, writing Tagged: 2021, 2021 in review, adhd, adhd medication, antidepressants, anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, bupropion, chronic fatigue, chronic pain, coronavirus, covid-19, depression, eds, ehlers danlos syndrome, emotions, family, graduation, grief, health, heds, hypermobile ehlers danlos syndrome, masters, masters degree, masters degree in songwriting, masters degree year two, medication, mental health, mental illness, migraines, pandemic, pandemic 2020, reflecting, reflection, songwriter, songwriting, stress, xaggitin, xaggitin xl
Posted on December 24, 2021
I found this post incredibly hard to write, which was very unexpected because, when I started putting down ideas for this post a few months ago, my thoughts just poured out of me. I was overwhelmed by how grateful I felt but now, while I can say I’m grateful, that all of that feeling is still there, for all of these things, my feelings don’t feel quite as accessible as they did before. I’m assuming the medication change is behind it somehow. So this post isn’t quite what I imagined it would be but it still felt important to try, even if I couldn’t get it ‘perfect.’ Done is better than good, as the saying goes. So some of these are shorter than they have been in the past, shorter than I’d like them to be, but the meaning is there. I hope that makes sense.
My family – I’m not sure if there’s anything I can say about my family that I haven’t said before but they are just the best. I love them more than I could ever put into words. It’s been so, so hard to be separated from so many of them for so long but I am grateful that everyone has been so careful over the last year. It’s been a really scary time and it’s just made me even more grateful for them than I was already.
Mum – Again, I’m not sure if there’s anything new I can say but my Mum is just so incredible and I’m grateful for her and everything she does every single day. This year has been so difficult for so many different reasons but there hasn’t been a moment that she hasn’t been there for me, regardless of what was going on for her. I don’t know how she does it but she’s my hero and I don’t know what I’d do without her.
My Granny – While my feelings about my Granny’s death are still an absolute mess, the one thing I do know is that I’m so grateful for her: for the time I had with her, for what I learned from her, for the memories I will always hold close. I am so proud to be her granddaughter and I just hope that she would be proud of me, wherever I go from here.
My friends – Between the lockdown, managing my Masters, and my health, this has been a really weird year in terms of spending time with my friends. But whether that was in person, on the phone, or over Zoom/Microsoft Teams/FaceTime, all of the time I did get to spend with my friends this year has been so special and I wouldn’t trade a second of it.
As always, there are more people and photos than I could fit in this little montage. I love you all.
Seeing people in real life and HUGGING – What more can I say? The opportunities to see my loved ones in real life and getting to hug them for the first time in months have meant so much to me.
The technology that’s allowed me to stay in contact with people – While I have been able to see more people and see them more often this year than last, I’ve still been very dependent on technology to stay in touch with friends and family. Between FaceTime, WhatsApp, Zoom, and Microsoft Teams, I’ve been able to talk to family and friends, complete my Masters, write songs, continue with the puzzle that is my health, and so on. I am so grateful that all of these things have been able to continue through the chaos of the last year; I don’t know what I would’ve done if I’d had to stop.
The cats – Ah, the family of cats. They are such a source of joy in my life: their cuteness, their playfulness, their cuddliness, their obliviousness to the world going on around them… They make every day better. They always bring me comfort and calm and they always make me smile. The timing of the pandemic has meant that I’ve gotten to spend so much time with them while they’re all still so young, especially the youngest generation, and that’s forged a really strong bond. They mean the world to me and I’m grateful for them every single day.
Writing songs and creating music – I’ve written so many songs this year that I’m so proud of, that I love so much. I’ve written with so many people and I’m so excited to put together my next project. It’s kind of hard right now (because the medication is messing with me so much) but when I’m writing songs, everything is good. I know I’m exactly where I’m supposed to be and doing exactly what I’m meant to be doing; it’s the best feeling. I’m so grateful to have had such a good year and I really hope that all of this medication stuff will be sorted soon so I can get back to writing.
My Masters – Looking back at September 2019, I really had no idea what the Masters would be like but I’m so, so glad I did it, even if most of it ended up being done in a pandemic. I met some incredible people and wrote a lot of songs I’m really proud of. The two modules I did this year were my two favourite modules of the whole course, The Writer’s Voice and the Major Repertoire Project. The latter was amazing and so much fun; it gave me the opportunity to really explore and experiment with my writing and I’m so proud of the work I did. I’m also really grateful because, for the first time ever, I had neurodivergent support. It made such a difference and I know I wouldn’t have done as well – or explored as widely – as I did if not for that support. I got so much out of the course and as excited as I am for what comes next, I’m really sad that it’s over.
Getting to gig again – I have missed gigging so much and so, getting to perform again was so, so much fun. It’s such a unique form of joy. As I said in my birthday post, “Performing songs that I’ve written about things that matter to me… it’s when I’m doing that that I feel most comfortable in my own skin, most in sync with the world around me. It’s the best feeling.” It was a bit awkward to start with, like the muscle memory didn’t kick in straight away, but then it all came back and I just had the best time. I’m definitely looking forward to doing more, COVID dependent of course.
My new diagnoses – While I don’t feel great about having hEDS and ADHD, I am grateful to know about them so that I can start to figure out how to manage them. My attempts so far haven’t been hugely successful (and in some instances, pretty unpleasant) and that has been distressing but I have to hope that things will get better at some point, that I’ll find something that works, that it won’t be like this forever.
The cool opportunities I’ve had (despite the pandemic) – While the pandemic has disrupted a lot, I still managed to do some cool things, aside from my Masters of course. I got to release the Honest EP on CD with a run at the awesome local independent music shop, Resident – something I’ve always wanted to do. And playing live again, at the Hard Rock Cafe no less, was very exciting. But I think the most exciting thing and the thing that I’m most proud of is presenting my first academic paper at a conference. And to make it even more perfect, it was the first Taylor Swift Musicology conference and I got to write and present a paper exploring a particular songwriting technique that I find really interesting. I loved writing it and I loved being a part of the conference and I may or may not be thinking about what I could write for next year.
Weekend swims – About a year ago, we found a pool that essentially does quiet evening swimming sessions. The lights are dimmed and they only have a certain amount of spaces so it’s always quiet (and feels about as safe as is possible in current times). These things make it about as Autism friendly as possible and we’ve been going as often as possible, swimming being something I’ve always loved and the least painful form of exercise right now. I’m still trying to find somewhere that feels as safe and as calm to swim during the week as these nights are only on weekends but I’m so glad to have it at all.
The exciting things coming in 2022 – Next year is already filling up with so many cool things: plans to release new music, new creative projects, some long awaited concerts, getting back to Nashville and all of the amazing things that that entails… If the pandemic taught us nothing else, it’s that we have no idea what may be just around the corner but even with all of this uncertainty, I don’t want to give up being excited about things. Yes, they may not happen but that’s a pretty miserable way to look at the future. So I’m going to stay excited about things. Or try to, at least.
I’m in a weird place emotionally at the moment, swinging between feeling completely overwhelmed and not feeling anything, so I’m not sure whether this flows or not. But hey, I tried. And I am grateful – so, so grateful – even if I can’t quite seem to access it all of the time.
Category: adhd, animals, autism, covid-19 pandemic, death, diagnosis, emotions, family, heds, holidays, mental health, music, university, writing Tagged: 2022, cat, cats, coronavirus, covid-19, family, family of cats, friends, gigging, goals, grateful, gratitude, hard rock cafe, healthcare, isolation, lauren alex hooper, lockdown, masters, masters degree, mental health, pandemic, pandemic 2020, performing, pets, plans, pride of cats, self isolating, singer, singersongwriter, songwriting, 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.