Finding HopeSurviving Is Better Than Not Surviving
Posted on March 19, 2018
Trigger warning for self harm. Please don’t read this if it’s something that will upset you or trigger you. I only want this to be helpful, never harmful. I also want to add that, while I’m not promoting or endorsing it, I’m never going to say, “Just don’t do it.” It’s just not that simple. My hope is that more openness on this subject will make it easier for people to access support and therefore not feel the need to do it.
It’s been on my to do list to write more about self harm ever since I posted the first piece. It’s one of those things that I will never get tired of talking about, never get tired of raising awareness for. There are so many misconceptions around it. I mean, I get it: there’s something inherently un-understandable about wanting to hurt yourself, unless you’ve gone through it. And even then, it’s massively complicated. Feelings are weird and pain is weird; it’s not surprising that people struggle to make sense of it. But I’d like to think that things will get better, hopefully sooner rather than later.
I was inspired to write this post after watching a YouTube video, ‘Living With Self Harm Scars’ by Claudia Boleyn. I’ve been watching her videos for more than a year now and I particularly love her videos about mental health. Borderline Personality Disorder (BPD) and self harm still aren’t commonly talked about so to find someone describing their experience, both positive and negative, and giving advice is invaluable. And to find someone so thoughtful and eloquent is even better. I really relate to a lot of what she says.
She’d posted a video in which she wore a short sleeve shirt that exposed some scars from self harming and had received several messages about how validating it was to see someone with visible self harm scars, without shame or drama. So, as a response, she’d decided to make a video discussing the importance of living with these types of scars, which I found both interesting and useful, even as someone with ten years of experience with self harm. She put into words so many emotions that I’ve felt but for a long time couldn’t vocalize. Had I had something like this when I was younger, life would’ve been very different.
The video isn’t necessary for the rest of the post to make sense but I really recommend watching it:
(EDIT: The video has now been made private but as I said, it’s not necessary for the rest of the post. I’ll update if this changes.)
Some of the things she says are so true it’s painful.
One of the biggest things about self harm is the release you get from doing it. My emotions get so strong sometimes that I feel like there isn’t space for anything else in my body, in my brain. There isn’t the space for my lungs to expand; I can’t breathe. It almost feels like the emotion is crushing me and the only way to survive is to open up my skin so that it can escape. It’s like a pressure valve. Once I’ve done it, I feel like everything stabilises and I can think more clearly. If there’s a problem, I can deal with it and if there isn’t and it’s just an overload of emotion, I can take care of myself a little better than I could if I hadn’t. As heavy as it sounds, Claudia describes it as ‘a way of not killing herself,’ which is a feeling I can empathise with. I’m sure many others can too. I’m not saying it’s a good thing and I’m not encouraging it. It is NOT a healthy coping mechanism. But that logic isn’t very persuasive when you’re dealing with such overwhelming emotions. Claudia also talks about this: “It’s not good for you in any sense… but it’s something. It felt like doing that at least proved that there was something there… And it just felt like this huge build up of feelings and I had to do something to get rid of it and doing that… was something.” I can completely relate to that and I think that’s a feeling that is often exacerbated by how difficult it is to get a diagnosis because having something is better than having nothing.
In my experience at least, trying to cut myself off cold from the only thing that helps me get through doesn’t help; it just makes the need worse and then there’s potential for me to do more damage. So I do my best to be safe while working on my issues in therapy so that one day, I can stop because I’m okay and not because I’m suppressing the urge. Because if that’s the case, I’ll always come back to it. To quote Claudia: “If you’re a self harmer then I think it’s always in the back of your mind as, like, a coping mechanism… The problem is: it’s always there so you always have to avoid it and avoid triggering it.” To give up self harming is a really big ask, and an even bigger one if you’re trying to do it without support. And if it’s too much for you, or for you to do all at once, that’s okay. I don’t feel ready to stop but one step at a time. The fact that my therapist supports this is a huge deal to me and it’s one of the things that told me that she was the right person. This has greatly lessened the pressure on me and has helped both me and my family to work through it a bit. I used to feel so guilty that I was hurting or upsetting them so I hid it and that was doing it’s own kind of damage. But now that we have a plan, now that we’re moving in a forwards-like direction even if it isn’t always easy, everyone seems to be coping with it better. I can’t imagine what it’s like for them to see me in that place but you can’t put that on top of the emotion that makes you want to do it; it will eat you alive. I think the only way forward is to try and talk about it with someone and do what you can to avoid it if possible.
I don’t have quite the same experience as Claudia does. That’s fine. Every response to self harm is a valid response. However you feel about it is okay; it’s your struggle. She talks about feeling annoyed and upset about having self harmed and wishes she hadn’t done it whereas I’m not (yet?) in that place. She talks about how it releases all that feeling but then you wake up the next day and feel like you’ve let yourself down. But, while that is quite a negative response, the way she talks to herself is very positive: “I’m just taking it as a stepping stone and saying, ‘Okay, you took a step backwards but you can take five hundred more steps forward. It’s fine.’” She talks about having a certain pride about them because they’re proof that she got through a really tough time. She can look at them and feel compassion and forgiveness for the version of herself in those moments: “It’s a part of me and it’s a part of my past and that’s okay. And I wouldn’t erase it and in a way, I wouldn’t want to because I’ve learned so much going forward.”
For me, self harm is usually a survival strategy. It’s getting through a moment that I feel like I can’t possibly get through. Maybe it’s the worst possible way to get through it but it’s better than not. So when I look at the mark the next day, or the next month, or the next year, I remember that moment: I remember getting through. I remember feeling like I can’t survive another second and then I remember the calm afterwards. I remember that I did what I had to do to survive. I wouldn’t say I’m proud of that – or proud of the scars – but I’m certainly not ashamed of it. Maybe one day I’ll find something that gives me that feeling without doing any damage to myself. How wild and glorious would that be?! But that’s the end goal, not the next step.
My other use for self harm is to mark a traumatic event. I think one of the hardest things about struggling with your mental health is the fact that people often can’t see what you’re going through and I needed it to be seen. I felt so traumatised by the strength of the emotions and by the meltdowns and I just couldn’t process that without a physical, identifiable injury to associate it with. Again, I’m not saying that this is a good method of coping but it was all I had at the time. Now, I have other things to try. I haven’t yet found anything that works but what’s important is that I’m trying, even if I don’t want to sometimes. This is a whole other issue that I do want to talk about at some point: to someone who hasn’t ever self harmed, the idea of not wanting to stop doing something that is so bad for you is weird, but is a feeling that is often associated with self harm. That feeling can be very isolating because many people don’t understand it, and many more react badly to begin with. And feeling misunderstood can really exacerbate the feelings that lead a person to self harming. I think that discussing self harm and learning about it can only help with that. There will be people who say that bringing awareness to it will encourage people to self harm and while that may be true to a certain extent, the amount of people it could help would massively outnumber that.
People do ask about the scars. I’ve personally never had an unkind response to them; it’s usually just awkward. Even if someone doesn’t actually bring them up, I see them notice and it can get really uncomfortable because no one knows how to handle it. Claudia mentions being embarrassed about people seeing them and talks about how she has tried in the past to cover them up. Sometimes that’s just easier. It’s so complicated and it’s hard when people don’t get it or jump to conclusions. There’s the typical, “You’re asking for attention,” which has always frustrated me no end. I’m not sure when asking for attention became such a negative thing. Of course, there will always be people who abuse the compassion of others, but I would hope that our first reaction would still always be to try and help. If someone is asking for attention in some way, they probably need it, even if the reason why isn’t immediately apparent. I never tried particularly hard to hide what I was doing because I think that, subconsciously, I wanted someone to draw attention to it and see what I was going through. But at the same time I didn’t feel able to talk about it.
Sometimes people see the scars and assume that you’re ‘showing them off’ when you don’t cover them up, which is weird to me. I’m not sure why you’d want to ‘show off’ or ‘flaunt’ the evidence of a moment where you’d gotten so low that you had to physically take it out on your body. When you think about the lengths people go to to hide their scars – wearing long sleeves in a heat wave, making endless excuses as to why you can’t go swimming, hiding them with make up or bracelets or tattoos, spending every second thinking about your scars and how you’re going to make sure that no one sees them – it’s clearly not a straightforward issue. And as Claudia says, it’s not showing off; it’s a form of body positivity, of learning to be comfortable in your skin, regardless of what that skin looks like. That is a hard thing; it’s something that should be supported, not torn down.
There’s obviously a lot more to talk about when it comes to self harm but this is already a lot longer than I’d originally intended it to be! This is something that makes me really emotional and fired up so I could probably write a book on it. It’s so important to talk about and talk about openly and honestly. I wish I’d found someone writing about it or recording YouTube videos about it when I’d started struggling with all the things I talk about on this blog. Had I, and the people around me, had more knowledge and awareness about all of this stuff, my ‘mental health journey’ would’ve been very different.
Snapshot #1: Country2Country Festival as an Autistic Person
Posted on March 12, 2018
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.
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.
“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.
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.
“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.
When You Feel ‘Too Much’
Posted on February 10, 2018
As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).
Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.
Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.
Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.
Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.
Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.
Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.
Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.
It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.
Finding Hope 