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 syndrome, 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 May 13, 2022
It’s the 12th of May again, which means it’s Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for a day to record the everyday lives of those in the UK. I’ve written diaries for most of my life and I love the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for people in the UK. It’s like putting together the pieces of a puzzle. So here is my piece.
Some important things to know before reading: I’m autistic and live with Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder. More recently, I was diagnosed with Attention Deficit Hyperactivity Disorder (Inattentive Type), Hypermobile Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome. I’m currently in between things: I finished my Masters Degree in Songwriting and am currently working on my next project for release but, at the same time, I’m trying to get my health (physical and mental) into a more stable place.
It wasn’t (and wasn’t ever going to be) a busy day. I’m halfway through getting off Moclobemide, my most recent antidepressant, so I’m trying to be gentle with myself; I’m trying not to push myself too hard. I’m also trying not to give myself a hard time for not doing more – with varying degrees of success. There’s just a lot going on at the moment, health-wise.
I had a bad start to the day in that I slept really badly, which has been the not so new normal ever since I tried taking medication for my ADHD. Even though I stopped taking them months ago, my sleep still hasn’t recovered fully. Between that, my chronic pain, and the crying baby next door, I didn’t get to sleep for a long time and woke up repeatedly. I didn’t really feel like I’d ever really gone to sleep, to be honest. I woke up around half ten (which is actually pretty good for me at the moment, what with the off kilter sleep schedule) because next door were having their deck worked on and the noise was too much to ignore.
There’s so much pain when I wake up in the morning at the moment. It’s awful. I can’t do anything until painkillers have kicked in and after feeling all of that, I’m generally pretty exhausted. I lay in bed for a while, reading until I felt like I could manage a shower, something that’s especially difficult at the moment as the pain is worst in my arms.
By midday, I was settled in the living room with my laptop. I had a couple of hours before a Zoom session with Richard (one of my best friends, my writing partner, my producer, and more) so I got to work. There were a couple of tracks that I needed to sign off on before they went to be mixed and mastered so I listened to those and did sign off. That done, I worked on a couple of upcoming blog posts until it was time for the Zoom session.
We caught up a bit since it’s been a little while since we last saw each other (although we frequently text each other silly jokes and pictures) and then we got down to business. [While I will be including the details in the version of this that I send in to the Mass Observation Archive, I don’t want to give away the details of new music. I will say that we worked on two tracks that I plan to release soon and discussed another bigger project that will be coming, hopefully, in the not too distant future.] All in all, it was a productive session.
I took a break after that. I put Harrow on (it’s been added to Disney+ so I’ve been rewatching it over the last few days) before having a quick check in with social media and then spending a bit of time reading.
It took a while to reel my focus back in but then I spent a couple of hours working on a couple of different upcoming blog posts. For some reason, my Mental Health Awareness Week blog post has been a struggle right from the start and I still haven’t finished it. I think I’m anxious about getting the balance right, of writing about the loneliness (the theme this year) without sounding ungrateful for the people I do have because I really am so grateful for them. I also just find Mental Health Awareness Week hard, with social media overflowing with vague, trite advice – advice that was vague and trite five years ago. I know it’s Mental HEALTH Awareness Week and not Mental ILLNESS Awareness Week but mental illness is part of mental health and I just feel like this should be a week (and don’t get me started on the fact that so many people and organisations only talk about mental health during this one week of the year) where every part of mental health and mental illness can be talked about, not just the ‘socially acceptable’ parts. But it isn’t. It doesn’t feel safe to do that. Loneliness isn’t a bad theme: loneliness and isolation are real obstacles to staying mentally healthy, to the point where it can be considered trauma. I guess I just feel like Mental Health Awareness Week isn’t enough when you’re trying to stay afloat in the ocean that is mental illness.
I had to stop working on that post after a while. I was just getting too frustrated. And then it wasn’t long before I was interrupted by the announcement of dinner. For those of you who don’t know, I live with my Mum but I have three other parents that I don’t live with. Anyway, one of them came over for dinner – something we do roughly once a week – and we had a good hang out and catch up. Sometimes we watch a movie but since neither she nor I were feeling great, we didn’t this time.
When she left, my Mum and I continued watching Harrow (she loved the show too) and I did another hour or so of work on blog posts – I’ve got a couple that I’ve been pulling together for a long time that I’ll hopefully be able to post soon – before moving over to my diary. Which brings us back to this post.
It wasn’t the most interesting day but I guess that’s kind of the point. It’s a normal day. And this is what normal looks like for me, this week at least. Who knows what next week will look like.
If you keep a diary or want to write down some thoughts about what your 12th May looked like, the website is here, where you can submit your diary entry and learn more about this and their other projects.
Category: about me, chronic pain, family, mental health, music, sleep, writing Tagged: 12th may, chronic pain, day in the life, diary, harrow, journaling, mass observation archive, mass observation day, mass observation day 2022, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2022, mental illness, music production, new music, richard marc, richard marc music, singersongwriter, singersongwriter life, sleep, sleeplessness
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.