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 April 17, 2022
Apparently I’m incapable of doing things halfway: I went from barely leaving the house to going on an almost three week trip to the US. The songwriting festival, Tin Pan South, was starting up again and I’ve been going every year since 2016, to write songs and network and just learn from the best songwriters in Nashville. I was utterly terrified – about the COVID risk, about how even a minor bout of COVID could affect the trip, about all of the uncertainty and anxiety that I was going to feel every day without having a true safe place to return to and recharge, etc – but I felt like I had to go. My Mum and I were as careful as we could be: we wore masks pretty much all of the time (being autistic makes that hard but I did the best I could) and we went through so much hand sanitiser. I was practically showering with it. I cried pretty much every day (whether from anxiety, stress, or exhaustion, I don’t know) and I was on my knees by the end of the trip but it was amazing and a lot of really cool things happened.
We flew from London to Boston, which was relatively simple – my anxiety aside. I’d already burst into tears at least twice before we actually left the runway. I was very anxious about COVID (and there were so many things that already made me anxious that now had an entirely new context because of COVID) and about flying (it’s not my favourite thing) and I think I was just really overwhelmed by everything ahead of me. The flight felt ridiculously long and while I was relieved to be back on the ground (and eventually into the hotel where we could take the masks off after wearing them for so long), I was immediately overwhelmed by being abroad, by all of the differences. Getting to the hotel room and being able to just collapse was a great relief.
Months earlier, I’d bought tickets to the Bleachers show where they’d be playing their album Strange Desire from start to finish in the hope that I’d be able to combine it with the Nashville trip – the date was, after all, pretty close to when Tin Pan South usually took place. So I chanced it and by some stroke of luck, it worked out and we made our connection in Boston with a day in between to go to the concert. I had no idea what the disabled accommodations were going to be like but, on the whole, the venue and staff were great, which made the concert possible for me and it was incredible.
I still don’t know if I can describe the concert, beyond saying how amazing it was. Charly Bliss were a really fun opener and I’m very excited for them to release the new songs they played; those were the ones that I really got into. And Bleachers were just fantastic. Jack Antonoff in particular was just like an endlessly ricocheting ball of adrenaline; I barely got any photos of him that were in focus because he was just in constant motion. It was so incredibly special to hear songs like ‘Wild Heart,’ ‘I Wanna Get Better,’ and ‘Like A River Runs,’ all of which I love so much. It still feels kind of unreal, like I can’t quite believe I was really there.
The next day, we struggled up – I felt completely wrecked by the concert – and caught our flight to Nashville.
When we got to Nashville, we took a couple of days just to rest and to allow me to collect myself. I was exhausted and a few days holed up in my Airbnb – where I didn’t have to worry about wearing a mask or the risk of COVID – was absolutely needed. And while there are always things to see and exploring to do in Nashville, we’d decided to keep our excursions to our highest priorities; we wanted to minimise the risk of exposure to COVID so that we could do all of the things that we really, really wanted to do.
So those first few days were spent chilling out, watching TV, catching up with my diary, and listening to Maren Morris’ new album, Humble Quest. I think I’ll forever connect it with Nashville now. Between listening to it as I flew into the city and watching her Amazon Prime show that first weekend, the album’s setting will always Nashville.
The show was great and I cannot wait until she comes back to the UK. I’m already in love with this album.
My first show back was a big one: Song Suffragettes’ 8th Anniversary show. Usually a Song Suffragettes show consists of five girls and they go around three times, performing three songs each (in total), before closing the show with the cover song performed together. But for this song, there was the first round of five girls who each performed twice plus a cover, a break in which THE Nicolle Galyon interviewed THE Kelsea Ballerini, and then a second round with five more girls who each performed twice as well as a cover song. It was a long but very excellent show.
The first round consisted of Ava Paige, Autumn Nicholas, Kalie Shorr, Ava Suppelsa, Lanie Gardner, and Mia Morris on percussion (she also played a song in this round – a rewrite of Fountains of Wayne’s ‘Stacy’s Mom’ from the point of view of Stacy, which was hilarious). They were all great but, as I think is the case with every songwriters’ round, there were some that resonated with me more than others. I’ve known and loved Kalie for years so I always know she’s going to be my favourite (if you haven’t listened to her music, please check her out – she’s very special) but I didn’t know the others and found I particularly enjoyed Ava Paige’s songs too. I also loved the cover they did, ‘abcdefu’ by GAYLE, and I’ve had it on repeat ever since (along with ‘Humble Quest’ by Maren Morris).
After the cover, they cleared the stage and set it up for the Nicolle Galyon and Kelsea Ballerini interview. They are both just such cool people and have achieved some incredible things; it was very inspiring. Nicolle asked some really interesting questions and Kelsea shared a lot of fascinating, inspiring, and encouraging stories and advice. And then they played a couple of songs that they’ve written together – ‘i quit drinking’ and ‘half of my hometown’ – as well as telling the stories behind the writing of them. It was a really, really cool experience and I feel very lucky to have been there.
The second round was made up of Emily Brooke, Caroline Watkins, Lauren Hungate, Madeline Merlo, Peyton Porter and, again, Mia Morris on percussion. I particularly liked Emily Brooke; I’ve seen her before and I really like her music. And they all told great stories about what inspired the songs.
It was an amazing show and experience and it was a great reintroduction to Nashville. I also got to reconnect with the people I know at Song Suffragettes (and those who I’ve spoken to online but not met) and that was really, really nice. I was kind of scared that, after three years away, the previous years of building relationships might have ended up meaning nothing but that completely wasn’t the case and I’m really grateful for that.
TIN PAN SOUTH
As I said, Tin Pan South is the big reason for coming to Nashville and I had some amazing shows on my list. There were some very tough choices too, great rounds that I struggled to choose between. But I think I made the right choices, for me, for this trip.
I could write about every single show in a ridiculous amount of detail but then we’d be here forever. So here are my highlights of the week…
AUTISM AWARENESS WEEK / DAY
It was World Autism Awareness/Acceptance Week and World Autism Awareness Day while I was away and, knowing that I’d be busy in Nashville, I’d prepared a series of posts to put up on my blog. I also posted this on Instagram:
OTHER FUN THINGS
While I didn’t do a whole lot more than go to shows, I did do a few things that are specific and special to Nashville…
I did manage to get in a second Song Suffragettes show while I was in town, which I was very grateful for. This round was made up of Jillian Dawn, Sam Bowlds, Olivia Faye, Elana Jane, Paige King Johnson, and Mia Morris, Mia being the only one I knew previously. They were all great – they always are – but I think my favourites were Jillian Dawn and Paige King Johnson; their songs just spoke to me more deeply than the others did for some reason.
On the whole, the travel had been good. I had disabled assistance at all of the airports and until the trip home, that was great and had made the whole flying ordeal a lot easier. But on the return trip, everything kind of went to hell and it was a bit reminiscent of ‘a series of unfortunate events.’ I almost had a meltdown on the flight from Nashville to Dallas because of a mix up with the seats, which was horrible.
And while the Dallas to London flight was okay (I mean, it was long and cold and uncomfortable but nothing went wrong), everything went wrong from the moment we landed, from problems with gates to confusion with the disability assistance to the freaking coach home. And by that time, we were both so tired (and I was so overwhelmed and stressed out) that I was definitely moments from bursting into tears. But we did eventually – eventually – get home.
It’s been about a week since I got home now and I’ve been a bit of a mess. The jet lag hit me hard, on top of my exhaustion from the trip itself, and my mental health hasn’t been great. I guess I’m just feeling really overwhelmed, like all of my feelings have been turned up to eleven (I mean, even more so than usual).
Category: anxiety, autism, chronic fatigue, covid-19 pandemic, emotions, event, favourites, food, heds, holidays, mental health, music, sleep, special interests, video, writing Tagged: bleachers, boston, boston ma, candle bar, candle bar nashville, candle making, caylee hammack, charly bliss, chris destefano, chronic fatigue, chronic illness, chronic pain, commodore grille, concert, covid-19, disabled, disabled access, emily shackelton, exhaustion, face mask, face masks, festival, humble quest, jack antonoff, jeffrey steele, jet lag, kalie shorr, kelsea ballerini, madison kozak, maren morris, mask, masking, masks, nashville, nashville songwriters association international, natalie hemby, nicolle galyon, nsai, paddywax candle bar, pancake pantry, pandemic, pandemic 2020, pandemic anxiety, singersongwriter, singersongwriter life, song suffragettes, songwriter, songwriters, songwriters festival, songwriting, strange desire, tin pan south, tin pan south 2022, travel, travelling, waaw, world autism acceptance week, world autism acceptance week 2022, world autism awareness day, world autism awareness week
Posted on March 19, 2022
TW: Mentions of self harm and suicidal thoughts.
It’s been a while since I did one of these updates and the last few months have been A LOT. An update is somewhat necessary, if only for blog cohesion. It’s all been pretty awful, hence all of my posts about medication: we’ve been desperately trying to get a handle on things. I’m not sure we have but there’s a natural point here, around medication and my upcoming trip to the US, so I figured now was probably the best time to do it…
The end of last year and beginning of this year was bad. Really, really bad. I was the most depressed I’ve ever been, self harming and suicidal. I’ve been suicidal in the past but never like this, never to this extent. It was awful but it was also kind of cozy and cotton wool-y, especially compared to what came next. I had a kind of anxiety-induced breakdown, something beyond and different to a meltdown, that just wrecked me. Like, it was so bad that I missed being suicidal. The anxiety was paralysing and the whole thing completely wrung me out. It was unbearable but it was probably the only thing that would’ve forced me onto the new medication – something I’d been resisting out of sheer exhaustion and hopelessness. But I couldn’t go on feeling like that. I was scared the medication would bury the stuff that needs dealing with and I still am but I couldn’t go on like that.
So I started taking Moclobemide but I was also taking Diazepam pretty consistently, given how bad my anxiety was. Things are better than they were – and I’m writing again, which is a good sign – but they’re still not great. I’m still struggling with a lot of stuff. I haven’t been able to go to therapy for a while now and I’m not sure when I’m going to be able to go back – that unexpected twist in the road certainly hasn’t helped. So I’m feeling kind of stuck in terms of how to move forward.
Physically, things haven’t been awesome either. My appetite hasn’t recovered much from the battering it took from the ADHD meds; I’m still not really eating but I am doing better than before so that’s something (the whole thing definitely hasn’t helped my already complicated relationship with food). And after a short break, my chronic pain is back with vengeance. It’s throughout my whole body but my arms, wrists, hands, and fingers in particular have been especially painful. I’m still waiting to hear back from the Pain Clinic. I haven’t written much about my experience with them; I guess I’ve kind of been waiting to have something to write about but so far, I haven’t received any proper support. They said they’d get back to me after their next team meeting but that was early November at the latest so I’m not exactly holding my breath. The Chronic Fatigue Service gave up on me – they literally told me my case was too complicated – and I don’t have high hopes about this experience either. I’ve been waiting for some sort of support for this pain since May 2020 and I know that the NHS have been overwhelmed but that is a really, really, really long time when you’re in pain.
My sleeping is better but still not great. The melatonin helped somewhat and I managed to wrestle my sleep cycle into something a bit more reasonable: rather than lying awake all night and then sleeping through the day, I am now at least sleeping mostly at night. But I’m incredibly tired all the time and I’m drowsy in the day again, just like I was when I was taking Phenelzine. I’ve picked up my Red Bull habit again – although not to quite the same degree (yet) – which I really never wanted to do again.
Between the sleepiness and the not feeling that much better, I’m not convinced by the Moclobemide. It’s pretty reasonable to assume – at this point – that MAOIs are the only antidepressants that help at all but as I said in my Moclobemide review, this level of better doesn’t feel like enough. I still don’t feel great; I don’t even really feel good. And I’m so sleepy, all the time. I don’t feel like it’s that much to ask for: to feel functional, to write songs, to have the capacity to feel good, to even be happy sometimes. Is that really more than I should hope for?
It’s been a long few months and it’s all left me feeling very raw. And, as excited as I am to get back to Nashville, I’m also terrified. The COVID risk aside, the whole world has been through this huge thing so how could going back not be different, feel different? It also just feels very soon to be out in the world for so much of every day when I still feel so… fragile, I guess. It’s like I’ve just started putting myself back together and I’m not ready for the Jenga tower to get toppled again, to start over. I don’t know if I have it in me. I just really hope – really, really hope – that everything goes as well as it can while I’m still getting my feet under me.
Category: about me, anxiety, covid-19 pandemic, depression, emotions, food, heds, medication, mental health, self harm, sleep, suicide Tagged: antidepressants, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, breakdown, covid-19, depression, diazepam, disordered eating, maois, medication, mental health, mental illness, moclobemide, monoamine oxidase inhibitors, nashville, pandemic, pandemic 2020, pandemic anxiety, self harm, self injury, sleep, suicidal, suicidal thoughts, therapy, trd, treatment resistant depression, trigger, trigger warning, trip, tw
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.