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.
Category: anxiety, bpd, emotions, mental health, therapy, writing Tagged: actuallyautistic, asd, autism, autism spectrum disorder, autistic, autistic adult, borderline, borderline personality disorder, bpd, emotional, emotions, feelings, health, journaling, medication, rest, therapy, tips, tired, writing
Posted on October 14, 2017
Ask anyone about Autism and they’ll most likely describe the stereotype: difficulty socializing, a ‘lack of empathy’, specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with Autism. While there are various statistics on the ratio of boys to girls, it’s clear that there are many more girls and women with Autism than was originally thought. And because the diagnosis of Autism has always been based on the male presentation of Autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience but I can speak to mine.
I was a shy kid. I was so shy, and so anxious, that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my Mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?
These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.
In addition to that, I never felt like I quite fitted in. Anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.
What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well as school, despite missing more than eighteen months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to Sixth Form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always been something that had come easily to me, something I’d enjoyed, and all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.
The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realise that there was something really wrong.
A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my Mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of Autism Spectrum Disorder. To start with, I was too exhausted by getting to that point to take it all in but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.
I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.
I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.
I’ve never had trouble with empathy, with ‘stepping into another’s shoes’. Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything. It can also be very difficult to do something as simple as walk down the street. I just feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favourite colours, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.
Socialising is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook that I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea that I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at it, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.
I do have my own specific interest: writing, in all forms, but my favourite is songwriting. I’ve read a bit about these focussed interests and apparently the interests in the female presentation of Autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters. When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realised that a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.
Of course there are other symptoms and this is just one presentation of Autism. As the specialist that diagnosed me said, we are the experts of our own Autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way Autism affects girls and women. Life post-diagnosis is difficult but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse. The lack of awareness and understanding about how Autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed Borderline Personality Disorder, a mental health problem that involves instability of mood, behaviour, and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe that I will ever be happy.
I am so lucky to have found the people who are supporting me now and I feel it because I know that without them, there’s a very real chance that I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of Autism in women. Too often it goes unidentified and the effects of that can be worse than the struggles caused by the Autism itself.
Category: about me, anxiety, autism, depression, diagnosis, mental health, self harm Tagged: actuallyautistic, anxiety, asd, aspergers, aspergers syndrome, autism, autism awareness, autism in girls, autism in women, autism spectrum disorder, autistic, autistic adult, depression, diagnosis, empathy, growing up, meltdown, mental health, mental illness, shutdown, social anxiety, writing
Posted on September 23, 2017
From a very young age, I’ve had a fear of forgetting things. Not little things, like what I need to take with me when I leave the house, or the door code at university, but the details of my life: how I survived the traumatic breakup of a friendship, how I felt at the concert of my favourite singer, what I was thinking when I started going to therapy. The little details of the big events, the things that have made me who I am.
To that end, I kept diaries. I’ve done so my whole life but the catalyst for my compulsive writing occurred just before I turned nineteen, when I was forced to take a gap year because my anxiety, depression, and social anxiety had become so bad that I just couldn’t cope with the course I’d intended to do. Suddenly I had a lot of empty time and a lot of chaotic thoughts to fill it. So I started filling notebooks, with stories, moments, quotes, and memories that I was terrified of forgetting. I would write non-stop for days, until either I fell asleep over the pages, or my hand cramped up so badly that I just couldn’t keep going.
While it was clearly an odd behaviour, no one, not even myself, thought much about it. I’d always been a writer, having written my first ‘book’ before the age of six. I’d gone on to write a twenty thousand word story at twelve, and since then, I’ve experimented with poetry, essay writing, blogging, and pretty much any other kind of writing you can think of. Now, at the age of twenty-three, songwriting is my true love, but my passion has always been for words: to express, to describe, to explain. So writing a lot wasn’t weird.
But as my anxiety in particular got worse, I tried to write even more. I’d write down the most minute details: what I ate at every meal, the plot intricacies of the TV show I was watching, the lyrics of each new song I listened to. I was absolutely terrified of forgetting each detail that had contributed to the person I was that I felt compelled to write everything down, so that I didn’t lose one single puzzle piece. It was taking up all of my time, literally, and that was without anything particularly significant happening.
When significant things did happen – the disintegration of an important relationship, the death of my much-loved cat, the introduction of a new medication – the writing became a serious problem. Over that period of approximately a week, I wrote about ninety pages, and over twenty thousand words. It’s true that I was working all the emotion out, figuring out how I felt – for me, writing is the best way of processing stuff since I can’t write as fast as I think, giving me the time to really think everything through as I write it down – but it was taking over my life. Still, I didn’t think anything of it. It was what I had to do to get through some really hard stuff. And even if I’d wanted to, I don’t think I could’ve stopped.
In September 2014, I started university. Suddenly things were happening. A lot of things. I was commuting to London, meeting literally hundreds of new people, and taking a load of new classes on subjects I’d never studied before. I also had a huge amount of homework; I felt like I was working all the time. So trying to write about everything that was happening became an impossible task. But not doing it caused me suffocating anxiety. It was a catch-22, and it took me months to catch up with myself. In January 2015, this was diagnosed as Obsessive Compulsive Disorder.
In the last four years, I’ve written over a million words. Over time, with some good medication, a fantastic therapist, and a lot of hard work, I’ve become better at managing the anxiety and I’ve become better at managing the compulsion. I no longer need to write down what I eat for every meal, what I do every minute of every day, although I still struggle against including every song lyric I love (I’m a songwriter – it’s research, right?!). But having said that, I still need to write a lot about how I’m feeling and how certain events make me feel. It really helps my frantic brain slow down and understand everything that’s happening to me. Of course, there are still certain things that cause my writing to go into overdrive. For example, I wrote more than twenty pages after a recent ninety-minute therapy session.
I have a complicated relationship with my writing. Writing is something I enjoy, and keeping a diary is a positive experience for me. But it’s the compulsion to do it, the unbearable anxiety when I don’t, the constant panic that I’ll forget things… These things make my life miserable. The longer I go without writing, the harder it feels to breathe. Having a complete history of your life, being able to go back to an important moment and remember how you felt… it sounds nice, right? Well, it would be if I had any choice in the matter.
Posted on September 16, 2017
I’ve been struggling with depression on and off for about five years now and that’s added up to a lot of bad days. Over that time, I’ve tried a lot of things and talked to a lot of people. And the best advice I’ve ever been given is ‘don’t make it worse’. Well, step number one is ‘don’t make it worse’, step number two is ‘try to make it better’ and that always rang true with me. In my opinion, the most important thing about coping during periods of depression is getting through it.
You can worry about making things better when you’re feeling okay but when you’re feeling awful, that’s too big an ask. These things on this list aren’t life changing. They’re not going to banish the depression or quiet the anxiety. But they have helped me to feel better, even if it’s just the smallest amount. And that’s where you have to start. So I thought I’d list them here. Maybe they’ll help some of you too.
1. Journaling – I’m a huge advocate of writing stuff down, for two reasons. Firstly, I think it really helps with the processing of emotions. A lot of the time, I feel like my thoughts move very quickly and to write them out, I have to really slow down. That allows me to make different connections, explore the depth of the emotion, and really think things through. I find that so, so helpful. And the second reason is that it allows me to let go of everything that’s happening to me. I’ve been keeping diaries for a long time and this is something that has really helped me. All of these big emotions make my head feel very full and it can feel hard to breathe but when I write it all out, it’s like I can let it all go. I compare it to backing up my hard drive: I know it’s safe and I don’t have to actively hold onto it or worry about forgetting things, something that often feels like it takes up a lot of energy.
2. Looking at the sky – I’m serious. There’s a little park across the street from my house and recently, I’ve found myself heading over there in the early evening (when it’s empty and quiet) and taking a moment to lie in the grass and look at the sky. There’s something about it that really calms me. I can feel my ribcage opening up and it gets easier to breathe. It kind of feels like, with the sky above me, there’s finally enough space for my emotions to leave my body. I don’t know if this works for anyone else but humour me. Try it and see how you feel.
3. Playing with or stroking an animal – There’s something about animals that can be incredibly calming. They’re so mindful, so completely present in what they’re doing. Spending time with my dog or my cat is something that’s really helped me over the last few years. Focussing on them, for me at least, makes everything fade into the background for a little while.
4. Washing your face – Simple but true. Sometimes, washing my face just feels like a fresh start.
5. Buy something (cheap) online – I say cheap because I know money is a cause of stress for a lot of us, but when you’re having a bad day, having something to look forward to is important. And sometimes there’s nothing in the diary so you have to create it yourself, even if it’s something simple, like a pretty notebook. Knowing that something nice is going to arrive in a couple of days can help you keep going.
6. Doing something that takes all of your concentration – If you’re feeling up to it, doing something that takes great concentration is really good because it prevents you from thinking too much and ending up in a spiral of negative thoughts. My preferences are playing the piano or doing origami.
7. Doing something you don’t feel pressured to be good at – A while ago, a friend suggested trying something like painting because it was something I’d never really done and therefore it didn’t matter if I wasn’t any good at it. It was a good idea in theory but in practice, all I could focus on was how I couldn’t make it look how I wanted it to look. To me, it was bad. So that just made me feel worse. But when I picked up poetry, I discovered I didn’t mind what the outcome was. I just did it because I enjoyed it and I think that’s because it was linked to something I was already skilled at. I’ve been writing in some form or another for years so while this form of it was new, the basic skills weren’t. It was already something I was comfortable with. So, if you’ve had the same problem, perhaps try something similar to a skill you already have: a different art form, a different sport, even a different type of puzzle. I’ve found that doing something purely for enjoyment can help, giving you a sense of accomplishment at a time when you may not feel very accomplished.
8. Having fresh flowers around – I don’t know about the logic of this one but there’s something about having fresh flowers in my room that just gives me a little pick-me-up.
9. Watching a movie or TV show – Sometimes you just need a break from your own life and watching (or rewatching!) a TV show or movie and getting really involved with characters can do just that.
10. Take a break from responsibilities – This is obviously not a long-term strategy but giving yourself a period of time where you aren’t required to do anything can recharge you. For a little bit, you can avoid things that make you feel invalidated and not feel guilty about the things you should be doing. That takes up a lot of energy and having a break from that just allows you to recover some energy so that you feel more capable when it’s time to start again.
11. Organise something – Putting things in their proper place can help give you a sense of control in a time you where everything may feel completely out of your control. I actually find this quite helpful when I have to make big decisions. Jumping straight to the big things can send me into a panic so I kind of warm up by organising my computer desktop, putting everything in the correct files.
12. Going to concerts – This is obviously a harder one to orchestrate because you can’t just conjure up a concert when you’re feeling depressed (although looking forward to one can be helpful too). Concerts can be difficult (especially if you struggle with anxiety as well as depression, like me) but in my experience, there’s something about live music and that group emotion that can make you feel very alive. And you’re completely focussed on that moment in time. Emotions feel more vibrant, after feeling very faded by depression and they stay with you, allowing you to relive them afterwards. There’s something very special about going to concerts, especially when it’s an artist or band that mean a lot to you, and I’ve found those experiences can really lift me out of my depression, even if it’s only for a little while.
13. Changing your bed sheets – I don’t know about you, but there’s something about sleeping on clean sheets that just makes me feel better. If I’m in a bad place, I need someone to help me do it but it always improves my mood.
So that’s my list of things that don’t make my depression worse. Hopefully this has helped or given you some ideas for when you’re feeling really low. And if you have any suggestions, leave a comment below!
Posted on September 13, 2017
Last night I got to see Cecilia Knapp perform her one woman show, Finding Home, for the second time. It’s a show that discusses some of the really big stuff, like family, growing up, loss, suicide, and hope, and again, I was completely blown away. She’s an incredible writer, an incredible poet. It’s a fantastic show and if you’re able to see it, you really should.
This post could easily be a list of reasons why I love Cecilia, and her writing, and I’d quite happily write that but that wasn’t why I wanted to write this post. I wanted to write this post because she’s doing something really important. She advocates using writing, and creativity in general, to share stories and to help us cope with the things that happen to us, and this is something I’ve always really thought too. I think it can change everything; it certainly has for me. Writing has given me a way to make intangible things tangible and process things that had always felt too big to think about. I can’t say it better than Cecilia does here, in her TED Talk:
And on the other side of that, I also want to highlight the power of art and words, and the effect they can have. I’ve been in a pretty bad place for the last few months and I’ve really struggled with feeling hopeless. But listening to those words, it kind of felt like all of the colour had rushed back into my life, all of the feeling back into my body. I felt alive again. And that was amazing.
Of course, one experience can’t alleviate depression but what is change but a series of experiences? And regardless of whether or not this feeling lasts, it won’t be any less special if it doesn’t. I’ll keep the memory safe and replay it whenever I need to remind myself of that moment, that feeling. Given this experience, I’m even prouder that this blog’s title was inspired by this show.
You can find out more about Cecilia and her work here.
Posted on August 12, 2017
This post has been hard to write. I’ve been writing various pieces to post for several months now but this is the one I keep avoiding. As much as I love writing, writing about myself – introducing myself with only a select number of words – is something I’ve always found difficult. Usually I find that words open everything up and make the world bigger but sometimes I think people are the exception to that. How do you fit something as big and intangible as a human being into something as small as a series of words? It’s kind of like when you take a photo of someone and even though it is them, it doesn’t look like them. But this is something I’ve wanted to do for a long time, so I’m going to try.
My name is Lauren Alex Hooper and I’m twenty-two years old. I’ve just finished my songwriting degree in London and am working towards my first release as a singersongwriter. Songwriting is my favourite thing in the world and the only time I feel truly calm is when I’ve finished a song. That’s one half of my life. The other half of my life is my struggle with my mental health. Of course, this does often overwhelm the other half. It often overwhelms everything. At this point in time, I have been diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder, Borderline Personality Disorder, and Autism Spectrum Disorder. These are still fairly recent (two years in the case of the ASD) but I’ve been living with the symptoms of them for a very long time. I’ve tried a lot of things to help with said symptoms. Some have helped, some haven’t. Currently I’m taking medication for the anxiety and going to Dialectical Behaviour Therapy, the best combination I’ve found so far. I hope to talk about all of this in more detail in future posts. If I start to write about it all now, we’ll be at ten thousand words in no time and while I don’t know much about blogging, I’m pretty sure that that’s not the way to start…
I’ve been writing about my experiences with mental illness for a long time but it’s only ever been for me. It’s only ever been a method of coping. But I can’t help thinking about how much it would’ve helped me to know other people felt the same way, had had similar experiences. For such a long time, I couldn’t understand why everyone functioned so much better than me, why I seemed to struggle so much more than everyone else and it wasn’t until I was sixteen that I heard someone talk about experiences that matched mine (it was Stephen Fry – but that’s another story). And that changed everything. I finally felt able to talk to my Mum because I had some context for what I was feeling and ever since that moment, we’ve been looking for answers and support. So I started to think about putting some of this writing (and there’s quite a bit of it) out into the world. Maybe it will help you, maybe it will help me. Here begins a new adventure.