Finding HopeMental Health Awareness Week 2022
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.
A Love and Hate Relationship with Autism Spectrum Disorder
Posted on March 30, 2022
Being autistic is complicated (to state the obvious). It’s never just one thing, in my experience at least. It’s not even one thing on one day, one thing in one moment. It’s good things and bad things all wrapped up together and while I can advocate and applaud ‘Autistic Pride,’ I’m not sure I’m there yet. But I can appreciate the good and the bad and so, considering it’s World Autism Acceptance Week, I thought I’d post something about just that: the good and the bad and learning to live with them…
Autism, as we know, is a neurobehavioural condition so the traits associated with it are right down in our wiring, just like the rest of our personality traits: being autistic is at the very core of us and everything else is built upon that foundation. There are some things about being autistic that mean a lot to me, things about myself that I love and value, including…
- A NEED FOR AUTHENTICITY – Obviously I can’t control whether or not other people act authentically but I need to be authentic. If I act differently to how I feel, it has a negative impact on my mental health and on my happiness. So, to be happy and mentally healthy, I have to act on how I feel and be who I really am and it’s in following that rule (for lack of a better word) that I’ve had the best experiences and created the things I’m most proud of. As I said, I can’t make that choice for other people but I do think that, on the whole, I get on better and make stronger connections with people who are authentic.
- PASSIONATE ABOUT THE THINGS THAT ARE IMPORTANT TO ME – If I love something, I love it with everything I have. I will fully immerse myself in said thing; I actually find it hard not to. That can sometimes make doing normal, day-to-day things hard because all I want to be doing is engaging with this thing I love but I’d rather love wholeheartedly than feel ambivalent about stuff.
- LOYALTY – When I care about somebody, I’m all in. I’ll do anything for my friends, sometimes to a pretty extreme degree: like, once I improvised travelling home from Nashville because my flight was cancelled and I’d promised a friend I’d be home for something or like, once I woke myself up every hour to check whether a friend who was in hospital had tried to get in touch because she was scared about being in hospital alone at night. Putting that much into a friendship or relationship does mean I’m more likely to get my heart broken (and it already has been) but like all of the things that matter to me, I’m never going to want to care less about people. I mean, on the bad days, sometimes I do – it would make life easier – but, as a person, I like that I care that much. It’s not always easy (or healthy) but overall, I always think it’s better to care more than less.
- STUBBORNNESS – I am stubborn as hell and sometimes it’s a pain; sometimes I can’t let things go even when I want to. But being stubborn has also gotten me through a lot of hard stuff and helped me make a lot of good stuff happen.
- IT GAVE ME PURPOSE – All I want to do is make the world a little bit better. That’s all I want. I hate seeing people unhappy or things not working so I’m always looking for ways to help and make things better but the world is a big place with lots of problems and it’s easy to feel overwhelmed and helpless. But finding out that I’m autistic, that gave me a place to start and the more I’ve learned, the more I want to help make being autistic an easier, less harmful, and ultimately better experience. And that’s what I’m trying to do, whether that’s with this blog, my music, or by trying to improve the accessibility and understanding wherever I go.
But there are also things about being autistic that I hate, that I struggle with, that cause me problems, and upset me deeply. I know it’s not healthy to focus on the difficult parts (unless you’re, for example, working on something specifically in therapy or counselling) but I do believe that acknowledging the negatives is important and validating. Endless positivity is not helpful and can end up being harmful so here are some of the things that I hate about being autistic…
- LACK OF INDEPENDENCE – With the sensory issues, fatigue, mental health problems, etc, my independence is severely hindered. And as hard as I work to improve my stamina and my mental health and so on, I don’t know how I’m ever going to be completely independent. If it’s even possible. The idea of living by myself is one that I can’t even really imagine ever being realised. And with that being such a standard rite of passage that holds such weight, it’s hard not to feel inadequate or broken.
- FEELING FROZEN – I still don’t really know how to describe this feeling and I can’t say for sure what caused it or when it kicked in but I feel very stuck, particularly in the developmental sense. I feel stuck somewhere between teenager and adult; I feel all the pressure of being an adult but I also feel incapable of doing a lot of the things that make it impossible to meet all of those expectations. All of the things that impede my independence come into play here too, like my lack of energy and my issues with pain. Just existing is an exhausting experience; living as everyone else does feels like an impossible dream.
- THE SENSORY DIFFICULTIES (WITH FOOD IN PARTICULAR) – Sometimes just being is really hard. Every light is too bright, every sound is too loud, every smell is overpowering, every fabric is itchy… and so on. It’s not like that everyday, at least not for me. But it is like that a lot. And most of the time, it makes doing normal things like eating, drinking, going about my day, etc, just that bit harder. I would love to not be phased by restaurants for example: to not worry about the fact that there’s probably nothing I can eat, or potentially even drink, apart from water (and even then it usually has lemon or lime or cucumber in it). Even small things feel so complicated. I’d love to be able to just meet a friend for coffee and that be that but between whatever we eat or drink, how loud it is, and all of the other sensory factors (and that’s not even thinking about all the sensory stuff involved in the travelling), it’s just exhausting. And I wish it wasn’t.
- THE RESULTING MENTAL HEALTH PROBLEMS – While we will never know for sure, I (and the mental health professionals that I trust and have worked with for years now) strongly suspect that many of the mental health issues I deal with, are at least partly down to being autistic, and specifically, being diagnosed as autistic so relatively late. Anxiety, depression, OCD, BPD, and ADHD are all comorbid to Autism. Maybe some of them would have developed on their own but I’m sure the Autism did not help and the amount of distress that these problems cause isn’t something I can easily put words to. Every day is a struggle because of them. Let’s leave it at that for now.
- THE LACK OF UNDERSTANDING, FROM EVERYONE (INCLUDING MEDICAL PROFESSIONALS) – Everywhere I go, I have to teach people about Autism, even the most basic stuff. From friends, to teachers, to doctors, even to people whose entire job revolves around accessibility. No one seems to know anything, or at least anything beyond the basic stereotypes. There’s almost no decent representation out in the world, in the media (which makes it very easy to feel alone and/or broken) – the vast majority of it is harmful. So many people still don’t even know that Autism manifests differently in girls. Autism is a complicated thing so I don’t mind helping people understand it, understand some of the nuance, but I hate how bad the general understanding is, especially when it’s people who should know better (when it’s part of their job, for example). This is why so many people are diagnosed so late and struggle so much: even the people who should have a working knowledge of Autism don’t and it’s really not good enough.
So, this was a bit more exposing than I’d expected when I started writing. But there it is. Almost a decade later and I’m still figuring out what it means, to me, to be autistic. It’s complicated and it’s hard and some days I’m really proud that this is who I am. I guess the goal is to have more of those days.
Goals For 2021 Reviewed
Posted on January 1, 2022
In hindsight, I don’t really know what I was thinking, setting goals when I had no idea what the year was going to look like. I’m not really surprised that I haven’t done as well as I would’ve liked, had the year been a normal year. But it wasn’t a normal year and I try to remember that when I feel myself getting stressed.
FIND A RHYTHM IN THERAPY AGAIN – This has been a tricky one. For various reasons, my therapy was fairly erratic for the first half of the year and then I wasn’t going at all until just a few weeks ago. A lot has happened and a lot has changed and going back is hard; it feels like I’m learning how to do therapy all over again. But we’ve worked through tough periods before. There’s no reason why we can’t figure out this one too.
PROGRESS WITH MY INVISIBLE BRACES – Okay, I officially failed at this. I’ve actually slipped backwards, going back to an earlier mold. It was just that, with everything going on, sleeping was the one time where I didn’t feel some sort of sensory overwhelm and I was so reluctant to lose that one safe space. I have worn it a little but not enough so I need to figure out a more manageable way to wear it.
WORK ON MY CORE – This has been a tricky one. Since the lockdown ended, I’ve been swimming as much as I can (and feel able to depending on various things: mental health, COVID numbers, etc) and I do feel like it’s helped, although it doesn’t feel like the pain mirrors how much or how little swimming I’m doing. Eleven months after the Hydrotherapy referral, I got a Physiotherapy appointment which resulted in them referring me to Hydrotherapy and a month or so later, I finally got a Hydrotherapy session. I’ve been doing the exercises by myself and I have a follow up appointment in the new year to make sure everything’s happening as it should. It’s too soon to know what effect it’s having but hopefully it’ll help with some of the problems caused by my EDS.
COMPLETE MY MAJOR REPERTOIRE PROJECT – I did it! It was hard work and utterly exhausting and, by the end, I was working twelve (or more) hours a day but I absolutely loved it. I loved being totally absorbed by one project and just writing as many songs for it as possible. I did struggle to balance what I wanted to do with the project with what I needed to do for the grade (although it’s true that trying to meet that criteria did result in it being a better project) but I had a fantastic supervisor, who was passionate and knowledgeable about a lot of the same things as me and who was also neurodivergent, which I think made a big difference when it came to tackling problems and her general support; my project was better because of her help. The day of my final presentation was a bit anti-climactic after everything and suddenly it was all over. But I’m so proud of the work I did, the many songs I wrote, and the mark I achieved, my highest out of every module. I’m so relieved, so happy, so proud, and so grateful to everyone who helped me get there. It was the best part of this year, easily.
FINISH MY MASTERS DEGREE – I still kind of can’t believe that I did this, given everything over the last couple of years. It’s so weird to look back at the beginning of the Masters in late 2019, knowing what I do now. But I did it: I completed my Masters Degree in Songwriting. During a global pandemic no less. But despite that, it was still an amazing experience; I met a lot of incredible people, I did a lot of work that I’m so proud of, and I got so much out of it. I’m so proud of my final project in particular and it was amazing to get such a high grade, as well as the Outstanding Student Award at graduation; that meant so much to me after everything that went in to getting the degree. And while I am excited for what comes next, I’m also really, really sad that it’s over; that’s the end of my education at ICMP and I don’t want my time there to be officially over. I loved my BA but doing an MA was the best thing I’ve ever done. It was beyond difficult and there were times when I hated it but it was an amazing experience and I’m so proud of myself and the work I did.
MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Yeah, no, I did not manage this. I’m barely managing to keep up, let alone clean up the messy notes I’ve been keeping over the last two years. My diary writing is in a state of chaos right now. It takes up so much time and causes me so much anxiety but I can’t stop; my OCD won’t let me. So I’m just keeping on keeping on; I don’t know what else to do.
WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – I think it’s fair to say that this is probably something I’ll be working on for the rest of my life; it’s not something that will ever be done, complete. I’m not sure if I’d say I’ve made progress with this but I do think I’ve learned a lot about myself and my insecurities. Two big factors that affect those insecurities are my mental health and how much I’m writing. When my mental health is good and I’m doing a solid amount of writing, I feel more comfortable and confident in myself and what other people are doing doesn’t feel scary or upsetting; they feel inspiring and exciting. But when my mental health is bad – and thus, my ability to write disappears – everything feels just too much. So most of the year was great, apart from a few dips, but my mental health hasn’t been great over the last two months – or in other words, completely fucking awful – so that’s what I’ve been focussed on: trying to make that better.
FIND MY NEXT PROJECT – This goal kind of makes me laugh now. To think I wanted to find my next project and now I have more projects than I know what to do with. It’s kind of stressful, trying to manage so many things at once, but it’s also wonderful to have so many things that I’m excited about. They’re all in process right now and I don’t know how they’re going to turn out so I don’t want to say anything yet, but I definitely found my next project.
This year has been a hell of a year for many reasons and while there were many negative surprises, there were also positive ones; those just aren’t always visible in the review of goals set at the beginning of the year. I’m really proud of a lot of things from the last twelve months and, given everything that’s happened, I’m actually kind of impressed that I was able to complete any of these goals at all. So I’m trying to focus on that.
Finding Hope 