Learn With Me

I was diagnosed with Autism Spectrum Disorder at the age of twenty, after actively struggling for several years. When I use the word ‘actively,’ I mean that, while I had had difficulties with all the things that turned out to be characteristics of Autism, they had become really hard to deal with and were having a serious impact on my life and my mental health. For example, I’d always found socialising confusing and stressful but I’d managed it for most of my life, thinking that that was just how I was built. Ultimately, that’s true but knowing where it comes from has been very helpful, both in validating that struggle but also in helping me to learn how to cope with those feelings. So, the diagnosis was a really big deal but I still think a lot about why it came so late and what that means.

In my opinion, there was one big reason why it took so long to get a diagnosis and that was the lack of awareness and understanding around both mental health and Autism, especially in women. Because Autism in women often presents very differently to the stereotypical male presentation, no one even mentioned it until we’d been looking for an explanation for more than eighteen months. I have a couple of blog posts about the process of getting my diagnoses coming up but the short version is that we started out by looking at my mental health. We went to various people but no one took my anxiety, my depression, and so on as serious problems, brushing them off as things that everyone deals with. So it took a lot of work to get even one person to recognise that what was happening was an actual problem, and then even more work to get them to see that that was part of a bigger pattern. And I know that all of that was down to this general lack of awareness about how Autism can manifest and again, how it can manifest in women.

I am very grateful to have my diagnosis, regardless of how long it took to get it but I do think that getting it so late has had a detrimental effect on me:

  • Expectations, my own and those of others – Having grown up assuming I was neurotypical, I have always compared myself to my neurotypical peers and hated myself when I couldn’t measure up. When I got to sixth form, I started to really struggle (mentally, socially, academically) and so the whole thing started to snowball. And because I was comparing myself so viciously to those around me who were coping so much better, I did great damage to my mental health and self esteem. Had I known that my brain worked differently and that I might need support, those two years of my life would most likely have been an altogether different experience. Even now that I know the difference is there, I still find it really difficult not to compare myself to others; I still often see myself as less capable or less intelligent or less whatever word is relevant to the situation.
  • The mental health consequences – While this is not something I can scientifically prove, the chances are that this whole process has had an impact on my mental health. Being repeatedly invalidated and brushed off definitely made my depression and anxiety worse. That invalidation may also have triggered the development of Borderline Personality Disorder; I’m not qualified to make a definitive statement on that but between discussions with my health professionals and my own research, it’s a theory if nothing else.

I’ve often had friends and family ask what they can do to help me and to be completely honest, I don’t know. I’m still trying to figure all of this out for myself: what’s affected, what helps, what doesn’t… Sometimes it feels like, just because it’s my diagnosis, people think I have this deep understanding of it. I’m definitely more clued in than I used to be but even two and a half years later, I don’t always know what to do when something comes up. I think the only thing I can say is this: “Learn with me.” This is a process, which involves a lot of trial and error and over-planning and screwing up. When it doesn’t work, it’s no one’s fault. We just learn and move on to the next thing. But hopefully, we can navigate it as a team rather than a group of individuals.

I try not to spend too much time thinking about how my life would’ve been different if I’d been diagnosed at a younger age because there’s little to be gained from it. It is how it is. But occasionally the thought creeps in and I imagine this life where I’m so much more productive and engaged and independent. I don’t know if that’s how it would’ve played out but it’s a seductive thought. But as I said, I try not to go down that rabbit hole. I think it comes down to this: there are people I wouldn’t have met and experiences that I wouldn’t have had if I’d been diagnosed as a child and ultimately, I wouldn’t give those up for anything.

Living With The Volume Up Loud

I have always been incredibly sensitive, ever since I was a little kid. It was one of the words used most commonly to describe me as I grew up. While it was usually emotional, I was also sensitive to what was going on around me and that seems to have increased over time. I can get overwhelmed by all the sensory information coming into my brain and I end up struggling to process it all. The processing can get stuck or I’ll zero in on one specific thing, like tunnel vision. It can also happen emotionally. The smallest thing can unsettle me and it can take hours or days to come back to myself. When I was diagnosed with ASD, someone described this really well to me: where neurotypical brains can filter out information that isn’t relevant (not ignoring it but not consciously processing it), neuroatypical brains can’t, so all the information comes in at the same volume and overwhelms the brain.

I struggle a lot with noise. Loud, sudden noises, like a slamming door or a fire alarm are very upsetting. It’s like they’re inside my body, inside my head, and before long, I can’t think and my anxiety overwhelms me. If it ends quickly, I can slowly force it back until I can function again but if it continues, it can lead to a meltdown where I lose all control of my emotions and thinking. It’s awful.

When it comes to studying or writing (although not songwriting), I need some background noise, almost to fill the space around me and in my brain. I often refer to the earlier example of information coming in through every channel: if I listen to something familiar, like a well watched TV show or audiobook, it’s like I’m filling some of those channels with something that I don’t need to process because I’ve already processed it, leaving me with only the channels I need to work on whatever it is I’m working on. Having said that, if there are too many different sounds going on, I start to get overwhelmed. It’s like my brain can’t balance them correctly, focussing on one too much and not hearing the others and so on. As you can imagine, that can make playing music quite difficult. I’m finally getting into the habit of carrying earplugs around but that has issues of it’s own: I find the sensation of essentially blocking my ears a difficult one, plus they’re pretty uncomfortable.

I’d never really thought of myself as being sensitive when it comes to touch but the more I think about it, the more experiences come to mind. I’m pretty specific about the fabrics I can wear and there aren’t many things I can put on my skin. It doesn’t take much before it feels unclean and once that feeling sets in, I can’t shake it. It’s horrible. There have been a few days where even multiple showers won’t fix it. I’ve also had some pretty bad reactions to various soaps and make up products, even those labelled as suitable for sensitive skin. The most dramatic example of this was when I was given perfume for my birthday. I love the smell of it but wearing it causes this weird reaction: my eyes water, my nose itches, my throat hurts, and so on. The worst part is how badly it irritates my lips: the skin burns and splits and it can take days to heal. And I don’t even have to be wearing the perfume to have that reaction; I only have to be wearing something I once wore with the perfume. Washing and airing the clothes hasn’t seemed to help much but I’m holding out hope that it will eventually fade.

My relationship with food needs it’s own post (I’ll get there, I promise!) but I think it’s important to mention in this context. I am really, really sensitive when it comes to food, so much so that I can only handle pretty bland stuff. This used to be a big problem because my family is pretty adventurous when it comes to trying different recipes and that often caused stress and anxiety all around. I got labelled as a picky eater and the most common response was to push me to eat the things I didn’t like, assuming that the experience would get better. But it didn’t; I just got more and more anxious around food. But since the diagnosis, it’s been easier. Well, easier to manage. It’s something that people can understand and that has really lessened the pressure on me. Now, the people around me let me decide what I can and can’t handle. I struggle with both texture and with taste and that can make some food impossible to eat. I get so overwhelmed by all the flavours that I can’t taste any of them individually. It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one. And that links into being really sensitive to smell. Something that those around me can’t smell can overwhelm me like a fog. It gets into my throat and my eyes. I won’t be able to focus and often have to leave the vicinity.

There are other things that overload my brain and while they aren’t exactly to do with my senses, they feel pretty similar. I guess they’re based on intuition and it seems that my intuition can be as amplified as my other senses.

Being in a crowd of people also overwhelms me emotionally. I get overloaded with how everyone has a name, a favourite colour, family, friends (who all have names and favourite colours), foods they hate, superstitions, dates they always remember, phone numbers they always forget, movies they quote, and so on and so on and so on. I get overwhelmed by how much is in everyone’s lives and I end up feeling like I’m being crushed by the weight of that. I feel like I can’t breathe. Some days I don’t feel it so strongly but on the days where I feel really fragile, like I don’t have any skin, it’s very, very stressful.

Another thing that needs it’s own post is my reaction to other people’s emotions. I feel like a lightning rod for them, especially the strong ones. I want to write more about this at some point but again, it’s relevant here. When I’m around anyone feeling a strong emotion, I start to feel it too. Most commonly I feel other people’s grief. And there’s always guilt mixed in: they’re not my emotions so I shouldn’t be feeling them. But I can’t help it. And it doesn’t take long for me to feel overwhelmed by all of that.

All of these things become exponentially worse when I’m stressed or anxious which, of course, is when I feel least able to cope with it. I don’t know if it’s something I can change, or whether my brain is wired this way, making everything so intense. Maybe it’s both. Maybe it’s neither.

The Consequences of an Autism Diagnosis

During my attempts to get a diagnosis, I had many people giving me their thoughts on finding a label and that only increased when we started pursuing an Autism diagnosis. It was almost as bad as the amount of people telling me to have a bath or go for a walk to help my depression. Everyone had an opinion on it and the majority of people were, at best, wary and, at worst, completely against it. But I knew I needed a diagnosis – an explanation – for why I was struggling and now, two and half years after my diagnosis, it’s clear that it was the right move for me. I’m not holding it against those people because they were only trying to look out for me but it did add to the stress of the situation so I thought I’d write out some of the positives and negatives that I’ve experienced around my diagnosis.

POSITIVES

AN UNDERSTANDING OF WHY I WAS STRUGGLING – Before my diagnosis, I was very aware that something was causing me to struggle and I needed to know where that was coming from. I could see that I functioned differently and, until I had an explanation, that was because I was broken. That was how it felt. If a doctor told me it was something – something that had been researched, had a name, something that other people had – then it was something that I could do something about. But if it went unnamed and uncategorised, it was because there was something wrong with me. So, to learn it was Autism, was actually quite a relief. Rather than being an intangible black cloud that was swallowing my life, it had boundaries and patterns and strategies to work with. That was massively helpful to me.

A VALIDATION OF MY STRUGGLING – Before my diagnosis, I was consistently dismissed by doctors and other medical professionals when I tried to get help. If I mentioned anxiety, I was told that, ‘everyone gets anxious.’ If I felt that I absolutely couldn’t do something because something in my body was screaming not to, I just had to pull myself together. If I talked about my debilitating fatigue, I essentially got a shrug of the shoulders. Now at least people listen. They don’t always have the answers I want – sometimes they don’t have answers at all – but I’m no longer being dismissed.

MAKING SENSE OF WHO I AM – The things I had been struggling with were taking over my life and, without knowing what caused it, that made me feel very lost. I struggle with identity stuff anyway but when all my thought and energy was being devoted to these problems, there wasn’t the space for anything else. With the Autism diagnosis, things became much more straightforward. Of course this may be different for other people but for me, I could put the Autism in a box in my brain and that allowed me to see what was there. I started to get more of a sense of who I was and who I wasn’t. There are differing opinions of whether you should define yourself by your Autism but it’s a massive part of my identity; looking back, I’m surprised I didn’t feel more lost.

ACCESS TO SUPPORT – Having an Autism diagnosis made it possible to get support, emotionally and financially. I’ve been able to get benefits, extra time on exams, flexibility in the arrangement of events, and so on. This has been so helpful and I’m so grateful for it. Of course I managed before but these things have made a great impact on my stress levels and have therefore made it possible for me to be more functional and more productive. And I’ve been able to enjoy myself where, before, I would’ve been paralysed by anxiety. None of that would’ve been possible without a diagnosis.

AN EXPLANATION FOR UNUSUAL BEHAVIOUR – Having ‘Autism’ as an explanation when people ask why I’m doing something a particular way or why I can’t eat a certain thing makes people a lot more accepting. While many people don’t understand Autism in detail, they do know that it can involve behaviours like these. For example, my family are much more patient with my food sensitivities than they were before the diagnosis because now they know where it comes from; they understood that I wasn’t being picky by choice, but because I was autistic. The focus has changed from putting myself through those tough experiences in the hope they’ll get easier to finding ways to help me manage them.

A CONNECTION TO OTHER PEOPLE WHO EXPERIENCE THE WORLD IN A SIMLIAR WAY TO ME – This is something I’ve only started exploring recently. For a long time, I needed to figure out how to be autistic, if that makes sense. I had to work out how to live with it, and adding more people into the equation was a bit too much to cope with. But now that I feel more together (at least in terms of the Autism), I’ve joined a group so that I can meet more people like me, i.e. similar age, gender, and diagnosis. This isn’t something that would’ve been possible without the diagnosis. And even though it’s so new, it has been really exciting. I’ve made some new friends and we’re having a lot of ‘oh my god, me too!’ moments which is surreal and wonderful and funny. Hopefully this is only the beginning of something.

BENEFITS TO MY MENTAL HEALTH – I cannot express how important it was to me to have my feelings and struggles validated, as they were when I finally got the diagnosis. Being believed was life changing. One of the theories as to why I developed Borderline Personality Disorder involves the continued invalidation I went through while trying to get answers for myself. I also had a lot of anxiety around the continued not knowing and I was severely depressed. Getting a diagnosis didn’t magically make things better but it was a huge weight off my mind. And it was movement; even if moving forward is scary, staying still is worse.

NEGATIVES

FEELING THAT THIS IS FOREVER – Pre diagnosis, there were many theories as to why I felt the way I did. But while I’d repeatedly flipped through those in my mind, I’d never really thought about what would happen after I got my answers. So while getting the Autism diagnosis was a huge relief and a generally positive milestone, I was still very thrown by all these other things that I hadn’t considered, and one of them was that Autism is a lifelong thing that I will have to deal with. When we thought it was depression for example, there was an end to it, the opportunity to recover. I know intellectually that although I won’t ‘recover’ from Autism and I will learn how to manage the difficulties, it did and still can make me feel very claustrophobic within my own mind. As irrational as it sounds, I’ve had moments where I’ve felt like, if I just tried harder, I would be able to break out of this ‘Autism prison.’ I swing back and forth on this feeling but, as you can probably tell, the positives of getting the diagnosis far outweighed the negatives for me.

I want to be clear that these positives and negatives are just from my experience. I know that many people have experienced stigma and have been badly treated because of their Autism but I don’t think I’m qualified to speak to those experiences. I don’t know what that feels like and I don’t want to speak for those people. So this is my experience. Hopefully it can be helpful.

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World Autism Awareness Week 2018

World Autism Awareness Week is here! This is a week that is dedicated to raising money and awareness around Autism and since I started this blog in August of last year, this is my first WAAW as a blogger. I wanted to do something a bit different to the usual programming so, this week, I’m going to post something Autism related every day. Hopefully these will be interesting and insightful for both those with Autism and those without. Let me know if there’s anything specific that you’d be interested in reading. I might not be able to manage it for this week but it’ll definitely go on the list to be written and posted soon!

For those of you who don’t know much about Autism, I thought I’d do a brief summary to ease you into the week.

Autism is classified as a developmental difficulty that affects how someone perceives the world and how they interact with others. It’s a spectrum condition so while all autistic people share areas of difficulty, they affect people in different ways and so Autism can have varying presentations; one person may dislike being touched and avoid eye contact while another may appear very sociable but be incredibly over sensitive to light and sound. Another may have both or neither. The first thing I was told after my diagnosis was that each autistic person is the expert in their own Autism because no one else can know it as we do. Every presentation is different.

One of the common analogies for Autism compares brains to the operating systems on computers. If every one else is a PC, autistic people are Macs; each system is sensitive to different things, programmes that are designed to do the same things look and run slightly differently, icons and folders are in different places, even the keyboards are different. This isn’t something you can change; as far as I know, you can’t reformat a human being… There’s no cure but then it’s not an illness. Having said that, a person can learn how to manage the difficulties of their own presentation over time, which can make them easier and less stressful to deal with. Some may need more support than others, especially if they have additional needs like a learning disability or mental health issue, both common with Autism. We still don’t know what causes it (although we do know it isn’t vaccines) but research is being done and currently shows that there are many factors at play, including genetics, the development of the brain, and the environment.

As previously mentioned, there are specific areas of in Autism that people struggle with to varying degrees:

Struggling with social communication is the most well known difficulty in Autism. Some autistic people may not speak at all or may have limited speech; some have excellent language skills. Many find it hard to understand jokes and sarcasm, interpret facial expressions and tone of voice, and make sense of abstract or figurative language. These things can make a conversation confusing and overwhelming, and many autistic people need time out after socialising to recharge. When the expectations in a conversation seem unclear or the emotions of others hard to understand, an autistic person may talk at length about themselves or something they’re interested in because these are things they know and feel confident talking about. Rather than being insensitive or rude, it’s very often an attempt to connect with others while navigating a very complicated situation. It often feels like everyone else has read a rulebook on life that you were never given which can feel very isolating.

Change can be very difficult for someone with Autism; the world can feel very confusing and unpredictable and so many autistic people prefer to have strict routines to control that anxiety. This can mean eating the same food over and over again or adhering to a specific timetable throughout the day. When there’s a change in plans, an autistic person may need time beforehand to adjust their thinking. Rules are also important and they can feel difficult or even impossible to break away from, even if someone in authority has said it’s okay.

Another of the better-known characteristics of Autism is that an autistic person may have a very intense interest that is apparent from a young age. Sometimes they change but sometimes they’re life long, anything from a particular instrument to the mechanics of aeroplanes. Of course, a person without Autism can be very interested in these things but it’s the intensity that’s different: an autistic person may find it difficult to think or talk about anything else and may pursue it to the exclusion of everything else. These interests are vital to the autistic person’s happiness and wellbeing and so it can be massively helpful if that interest can be channelled into a related job, area of study, or hobby.

Many people with Autism have difficulty processing their environment and can quickly become overwhelmed by light, colour, smells, and so on. Personally, I particularly struggle when I’m surrounded by people: there’s too much information to potentially take in, from their names to favourite foods to the films they hate. Experiences like this can cause severe anxiety and coping with that anxiety can manifest in lots of different ways. Some people chew their nails, some have panic attacks, and some display behaviours like rocking or banging their head against something; these repetitive, familiar actions can help to shut out the stressful stimuli and keep that person calm.

It’s also important to note that there can be dramatic differences between men with Autism and women with Autism. The statistics have always said that there are more men with Autism but it’s starting to become apparent that it is massively under or misdiagnosed (as anxiety or Bipolar) in women because they often present in ways that are very different to what is commonly regarded as Autism. They may seem to socialise effortlessly and show no disruptive behaviour but this seems to be because women are somehow able to mimic ‘normal’ behaviour; plus there is still significant societal pressure on women to be polite and to avoid causing a fuss or drawing any negative attention, which has most probably contributed to this. Instead they commonly experience serious anxiety in social situations, struggle with overwhelmingly strong emotions, and their focussed interests may be things that girls and women would already be interested in, such as a TV series or a hobby like make up or reading, which means they’re not automatically recognised as a sign of Autism.

I intended for this to be a short post but, again, it’s become quite long. Whoops. So with that said, I will leave you with some useful links and The National Autistic Society’s video for this year’s National Autism Awareness Week and Too Much Information campaign. Funny story: I actually applied and then auditioned to be in this film. I didn’t get it (obviously) but it was a really awesome experience and I would definitely love to work with them on another project in the future.

They described the idea to me during the audition and it’s turned out so well. I can definitely relate to the experience depicted.

Useful Links:

I also recommend checking out any local Autism charities, support networks (Facebook is a good place to look – type in the name of your town and ‘autism’), and services. These can make a really big difference in the day-to-day life of an autistic person.

See you all tomorrow!

Snapshot #1: Country2Country Festival as an Autistic Person

So, while this isn’t specifically a post about mental health, it is about how my mental health affects my life and the things that I want to do so I think it’s still relevant and maybe useful to someone else. There still aren’t a huge amount of resources for people with Autism and music festivals aren’t a naturally autism friendly situation: they’re loud and busy and overwhelming. The obvious advice is to avoid the conditions that cause you distress but when you love music and live music, it’s not that simple. This thing that I love is also a great stress. So it has to be about balance. Am I having a good time? Is this taking more than it’s giving?

So, let’s begin. For those of you who don’t know, Country2Country is a country music festival in London, Glasgow, and Dublin. In London, it’s three days at the O2 Arena with little stages throughout the complex and a big arena show in the evenings. I love country music and I love the country music community in the UK so there are a lot of positive moments but a lot of stressful ones too. I thought I’d write out a little overview of the festival, the good points and the bad, and how the whole thing fitted into the picture of my mental health and experience of Autism.

The biggest consideration for events like these is my lack of energy, especially with my recently increased struggles with fatigue. Standing is a huge part of any festival and for me, standing for extended periods of time (and by that I mean more than a few minutes) results in shaking, dizziness, and overwhelming nausea. Not to mention the disproportional levels of fatigue that build and build until I physically can’t stand up anymore. Most of the shows are standing, especially the ones during the day. And like any concert, there’s the expectation that you stand, as if standing means you care more than someone who’s sitting. My fatigue has been so bad lately that I only went to shows where I knew I could sit down and even then, I really struggled. I had to really pick and choose what I could go to and that came down to an upsettingly short list. But I was determined to enjoy what I could manage.

My 2018 C2C experience began on the Thursday night with a Songwriters’ Circle where a group of songwriters take turns playing songs they’ve written (that have often been released by other artists) and sharing stories about writing them. I love these events: they’re usually pretty laid back and very inspiring. It is one of my favourite things to hear songs as they were originally written and to hear how they turned from nothing into something. I was almost at the back but I was just so happy to be there. The line up was Brett James, Luke Combs, Nicolle Galyon, Kip Moore, and Natalie Hemby who is one of my all time favourite songwriters so I was very excited and they did not disappoint. They played old favourites as well as new songs but I think everyone agreed that Natalie’s performance of her song, ‘Jealous,’ recorded by Labyrinth, completely stole the show. Although I must also give an honourable mention both to Nicolle’s performance of ‘Consequences,’ recorded by Camila Cabello, and Luke Combs’ new songs. And to round off the night in the most perfect fashion, I managed to hang out with Natalie for a few minutes after the show and she was even lovelier than I remembered. So with that as a first night, the standard was set pretty high!

My excitement was so high that I did crash afterwards. I was completely overwhelmed by nausea twice on my way home, to the point where I had to sit on the ground and just breathe until it faded. This is one of the side effects of my most recent medication (for depression) and it’s one of the worst I’ve experienced but once it passed, I was okay. The emotional energy I get from live music and from being inspired and from talking to these wonderful people is unlike anything else. I could live off that night for days, even weeks, and that’s without the rest of C2C. It’s like feeding a dying fire; I come back to life.

Having had to go back home to Brighton, Day 1 of C2C began with travelling into London. My first event of the day was a very exciting one: an exclusive listen to The Shires’ upcoming album. I’d applied for a ticket and not gotten one but one of my friends in the UK Country community offered me their plus one. I can’t put into words how much that meant to me. I’ve been listening to The Shires since their first single came out and I actually went to one of the events they held when releasing their first album. I’ve already said it but I absolutely adore the UK Country community: I’ve met so many wonderful people (and now great friends) while queuing for gigs or while waiting in meet and greet lines and it is just the kindest, most generous group of people. For this event in particular, I saw so many people offering their tickets to people they knew desperately wanted to go and I was so touched to witness that. Personally, I had three people offer me a ticket because they all knew how much I wanted to be there. How amazing is that?! You’ll get no spoilers from me but it was better than I’d hoped it would be and I felt honoured to be there. Ben and Crissie are such lovely people and it has been so special to watch their journey up to this point. I’m honestly so excited to listen to all of these new songs over and over when the album comes out.

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We weren’t allowed to use our phones in the session so, for the purposes of this blog post, I took a photo of The Shires appearing in the official highlights video.

I genuinely loved hanging out with everyone and catching up afterwards but it wasn’t long before I started to struggle. I powered through for a while but when my legs started to shake, I had to call it and headed back to where I was staying, although I did have to sit in North Greenwich station for a while because the shaking and dizziness got so bad. I would love to be able to wander around and spend the day listening to artist after artist but it’s just too much for me: my lack of energy, the constant high level of noise, and the overwhelming amount of people. With the latter two, it’s like my brain becomes overloaded and that can trigger a meltdown. I haven’t written about meltdowns very much so far on this blog (although I mentioned them here – a more in depth post is on the list, I promise!) but one way to explain it would be to imagine tapping on glass that has a crack in it. While one knock doesn’t do much damage, they build up and eventually it shatters. That’s how incoming sensory information feels to me. When I reach overload, I experience extreme anxiety and that can lead to crying, screaming, self harming, etc. Obviously that’s not something I ever want to experience in public, with people that I don’t know, where I don’t feel completely safe, so I have to be aware of how close to that point I am and retreat to a safe place when everything starts to feel too much. I went back to where I was staying and had a couple of hours of quiet time before heading back to the O2 for the arena show.

Kelsea Ballerini was my priority with Tim McGraw and Faith Hill’s headline set coming in second; I would have to assess my capabilities throughout the night. Getting into the O2 Arena always stresses me out: there could be a problem with the ticket, they might not let me take my bag in, the metal detector could go off and they’d want to pat me down… All of those things cause me a lot of anxiety before going into a concert but fortunately everything went smoothly this time (having said that, that anxiety still takes a lot out of me, even when the things I’m worried about don’t come to pass). It always surprises me that people can’t seem to tell how anxious I am because to me, it’s everything. It’s all I can think about. But as I said, it was simple, so that anxiety didn’t turn into anything else.

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“Can I be Kelsea Ballerini when I grow up? What a fab show. I loved every second of it. I may have cried a little bit because I want to write songs and sing them too and I want it so badly but that’s not necessarily a bad thing. We are made to love things and I love music unapologetically.” (x)

Kelsea Ballerini was fantastic. I’ve now seen her three times in the last year and she’s such a great performer. I got completely lost in it and that was wonderful, even if I did cry a bit because I want that to be me so badly – that’s not something I can ever really separate myself from. But I had a really awesome time, and I actually managed to lose myself in the music and not feel so self-conscious about enjoying myself. Normally, I can barely move for feeling so exposed to everyone’s opinions. So that was really fun. Also, we all need someone to look at us the way Kelsea looks at her audiences…

By the end of her set, I was feeling very shaky and since I wanted to be well enough for Sugarland the next night (I’ve been waiting eight years to see them live!), I decided to go home. That was derailed a bit by some stuff going on with a friend that didn’t exactly help my anxiety and by the time I got home, I was completely exhausted. As is normal after days and evenings of high emotions, it took me a long time to get to sleep but then I slept so deeply that when I woke up, I was so disorientated that a week could’ve passed. Apparently the previous two days had tired me out more than I’d thought because I slept for most of the day and only really managed to get up in time for the arena shows. I was pretty shaky and anxious but having some of my family with me definitely helped.

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Sugarland were freaking awesome. One of my parents played me a few Sugarland songs about eight years ago and ever since, I’ve absolutely loved their voices, their songs, and their energy. If I’m jamming out in the car, it’s most likely to a Sugarland song. So we were both super excited when they announced that they were getting back together and even more so when they were on the line up for C2C. We sang and danced (while sitting down) through the whole thing and it was so, so fun. It couldn’t have been better. I mean, there were more songs I wanted to hear but I do understand that they couldn’t just keep playing until they’d performed their entire repertoire. Mostly… Anyway, I was and am a very happy bean for having finally seen them live. It was a dream come true.

“I didn’t think I could love Sugarland any more than I already did but after last night, I absolutely do. The show was incredible and after waiting eight years, it was a dream come true. Apologies to the people behind me for all the crazy dancing and dramatic singalong.” (x)

The headline act of the night was Kacey Musgraves who I have loved since her first album. When I bought my tickets, I decided that I wanted to see her more than anyone on the Sunday so I decided to push myself to stay for her and then not go the next day. I was okay with that trade off and it was worth it. I’d sort of forgotten how much I love her and her writing style and it was so great to hear both my old favourites and some new songs from the upcoming album. I struggled a bit with the graphics on the screens; they made me a bit dizzy and gave me a headache. But it was a great show and I can’t wait for her to come back to the UK in October. I was worried about being in the underground with masses of people so we left a little bit early and had a relatively easy journey home.

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“Kacey Musgraves is a princess. I’m loving the new songs.” (x)

It was a good weekend, if a tiring one. I spent the next day in bed, tired and achy and a bit overly emotional, but that’s not an unexpected consequence of an event like this. It takes a lot out of me, on lots of different levels. Because of all the thinking and restricting and careful planning, it wasn’t too bad but I wish it were easier. I wish I didn’t struggle so much and I wish my abilities and my needs weren’t so incompatible with the way the world typically works. Being out in the world is stressful and overwhelming and most places don’t come with a built in quiet room to hide out in while I recharge. It doesn’t help that I find it really difficult to ask for support. I feel like I’m failing for succumbing to these problems and that I should be strong enough to power through, which I think comes from being diagnosed so late: I’ve spent my life thinking this way and it’s not an easy habit to break.

I hope that this has been helpful, or at the very least gives an insight into what it can be like to go to a festival such as Country2Country when you have Autism, when you struggle with your mental health. The positive moments are unrivalled but the difficulties are freaking difficult.

Holding On And Letting Go

A while back, a friend shared this article on Facebook and I couldn’t not share it here. I’m currently in the process of going through everything I own in preparation to move house and so I’m coming across a lot of things that I have previously loved. I’m being constantly faced with the decision to hold onto something or to let it go. So I resonated with this piece very strongly.

I thoroughly recommend reading it but here’s a summary. The author describes feeling sympathy for inanimate objects, from “the guitar that doesn’t get played anymore” to “the once loved camera that has now been displaced by a newer one.” And the thought of an object being discarded causes great anxiety and sadness.

I’ve struggled with this all my life. As a child, all my toys had personalities and thoughts and emotions but that hasn’t faded as I’ve grown up even though I no longer play with them. They’re all still in my cupboard, neatly stored in boxes and bags. I feel guilty about that, that it must be uncomfortable and claustrophobic, but it’s better than throwing them away. That would be the ultimate betrayal. Imagining them in a bin or landfill fills me with such overwhelming anxiety and guilt that I can’t think properly. But it’s not just toys; it’s everything. I have a draw full of my old phones (how can I go from carrying them around twenty four seven to throwing them away?), a box of broken Christmas ornaments (it would be so callous to throw them out just because they’re not perfect anymore), my old school jumper, and so on and so on and so on.

Throwing things away is hard for me. I have this anxiety about letting things go, like I’ll lose parts of myself. Anything that has some meaning to me, I have to keep. It’s similar to how I write everything down and take a million photos. It goes with my difficulties around identity, a big part of BPD, and feeling like I have no idea who I really am. So I’m probably assigning aspects of my identity to physical objects in response to that. It certainly doesn’t help with all of this. And I wouldn’t be surprised if there’s a link to the difficulty I have in managing the strength of my emotions. I’ve talked about this before: how strongly I feel emotions and how I sometimes feel other people’s emotions. I’d always assumed that it was another facet of that.

The article discusses some other potential causes:

“There is some evidence to suggest that OCD and Synaesthesia are possible causes. Put simply, Synaesthesia is a neurological condition where the senses are confused. So someone with it, may smell a taste, or see a particular colour when thinking of a specific number. Some people have a form of Synaesthesia known as Personification. This is when a personality or emotion is attributed to an object. It would appear that there is a higher tendency for those on the autistic spectrum to have Synaesthesia in one form or another.”

The link to Synaesthesia is an interesting one. I do have some Synaesthesia-like experiences: with some sounds, I experience specific tastes or sounds. The sound of 7 chords leaves a metallic taste in my mouth so strong that I avoid those chords as much as possible and working on the production of my songs can be a bit of a minefield: high frequencies, like cymbals, are yellow while lower frequencies are dark colours (different depending on the instrument) and the colours in the song need to be balanced for me to be happy with them. It’s hard work and often leaves me with a debilitating headache.

I don’t know what the answer is or whether there is one. But I think the more we talk about this stuff and the more normal it becomes, the less we struggle against it. That takes up so much energy and emotion when living with these things is hard enough. That’s kind of why I started writing all of this stuff down, to feel less alone and hopefully make other people feel less alone too.

(Left: me and my toys when I was about eleven. Right: confetti that I kept from an amazing concert.)