‘Invisible’ Music Video – Out Now!

I’m so excited to announce that the ‘Invisible’ music video is finally out. This time last year, I put this very special single out and although I’d planned to put the video out straight away, life and mental health got in the way. But now it’s Mental Health Awareness Week again and I thought it was time this video saw the light of day. I would love it if you’d watch and I really hope you like it. It’s so, so special to me.

Almost two years ago now, I got together with Rosie Powell (my incredible director and videographer) and we planned this video. I really wanted to focus on the lyrics and the story behind the song so we came up with the idea of painting the lyrics on a wall (shout out to one of my parents for letting me paint all over my old bedroom wall). I was super excited. But having never been ‘in’ a music video before, I was  also really nervous about being on camera. I felt really self conscious and worried about how my issues with eye contact would affect the video. Autism problems, am I right?

Day one was painting day. We set up in my childhood bedroom (and by that I mean, we lugged all the furniture out – which I then fell over multiple times) and got to work painting the lyrics on the wall.

It was really fun but weirdly, really hard work: it was very physical and I was exhausted by the end of it. It was also really cathartic to physically put those words out into the world. I’m not very artistic – I’ve never been very good at drawing or painting – so this was all new to me: seeing what I’d imagined in my head out in the real world. It was very satisfying to see this…

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… turn into this:

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It was a really good day and I’m really proud of the work we did.

Day two had Richard (my writing partner and general partner in crime) coming down to Brighton and we shot the ‘performance’ section of the video. I felt very self conscious with the camera on my face so much but both Rosie and Richard are so lovely that I felt very safe. Again, it was exhausting – that might be my issues with fatigue coming into play – but really satisfying and fun.

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I had a lot of plans for this single and the video but alas, they weren’t to be. Life happened and my mental health took a lot of hits (if you’ve been following this blog, you’ll be aware of some of them). My depression has been brutal and made doing anything musical almost impossible. It’s been a long, hard road but I’m so, so glad this video is out in the world. I’m so proud of it and I’m so grateful to have worked on it with such lovely people. I wouldn’t have wanted my first music video to have come to life any differently.

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Claudia Boleyn on BPD and Obsessions

I’ve written about Claudia Boleyn’s videos before but this is another great one that I think really clearly explains something that happens with Borderline Personality Disorder (also becoming known as Emotional Intensity Disorder) and various other mental health problems. I really recommend watching it.

In this video, Claudia talks about how, when you’re struggling with your mental health, you can develop obsessions with certain things, particularly fandom related things: fictional characters, books, TV shows, etc. These special interests can overlap with autistic special interests but they can also come about as a coping mechanism; they can become an escape from the difficulties of the real world.

She talks about how she can categorise her life by her obsessions, including Emmerdale and Anne Boleyn and certain areas of art history. She talks in particular about her obsession with Anne Boleyn, how it strengthens her and gets her through the really tough times. She even uses Boleyn as a surname: “I use it to exist in the world.” She talks about how she uses this obsession and others to understand herself. All of this makes those obsessions really special and important. I can definitely relate to this. My life can be divided up by my obsessions: animals but particularly horses – I obsessively read the Animal Ark and Saddle Club book series – Harry Potter, crime dramas, Taylor Swift, certain youtubers, anything superhero related…

“My identity and my life is sort of filled up with the stories of other people rather than stories of my own.”

With BPD, there’s the extra layer of struggling with your identity and your sense of self. Claudia talks about how she would go to school dressed as her favourite characters and how a teacher once asked her, ‘When will you come to school dressed as yourself?’ But that’s really hard when you don’t know who you are. I’ve always found it very easy to lose myself in fandoms or characters because I don’t know who I am to begin with and I’ve had a couple of experiences where I’ve done things I didn’t actually want to do because I thought that’s what a character would do, i.e. what I should do to embody those good characteristics.

“I’ve never felt like I have a proper identity in myself so I’ve sort of constructed one in a way based on what I admire and what I want to be and what will make me as good a person as I can be and what will make me contribute to the world but it’s really tough.”

It can be a good, helpful strategy – until it starts to dictate your emotional state.

“I think this isn’t spoken about enough with BPD, especially because we can struggle with identity and who we are and what sort of people we are. I think we often construct ourselves based around fiction and around those characters we admire and I think it matters a lot to us. It feels like it becomes a part of our identity in a way, so when it goes wrong, it feels like we’re falling apart. Yeah, it’s difficult.”

Another problem in BPD is that of regulating your emotions. Small things – day to day things – can have massive impacts on your mood. It can be exhausting and stressful to go through such ups and downs and it’s constant; there’s a lot of fear and uncertainty involved. So escaping into an obsession or fandom can be helpful and soothing but then, when something goes wrong in or around that fandom, for example, it can cause really negative emotions because your escape, your safe place, has been threatened. It might seem extreme from the outside but it’s very real and personal if you’re going through it.

I really relate to this video and I’m really grateful to Claudia for putting it out into the world. We need to talk about all parts of living with mental health, not just the relatively straightforward ones.

My Experience of Borderline Personality Disorder

I haven’t written much about my diagnosis of Borderline Personality Disorder, even though it’s a diagnosis that means a lot to me. It was hard fought: when my psychiatrist didn’t believe me, I presented him with all the research I could find to prove to him that it was at least worth considering. He both apologised and admitted that he was wrong, and it wasn’t long before he bestowed the diagnosis upon me. It was confirmed later that year when I got my Autism diagnosis.

The name Borderline Personality Disorder is not a clear one. People assume that there’s something wrong with your personality or that you only just have a personality disorder. Both of these assumptions are incorrect. The word ‘personality’ in personality disorder refers to the patterns of thoughts, feelings, and behaviours that are individual to each of us and the word ‘borderline’ relates back to early uses of the label, when it was thought to be a condition ‘on the borderline’ between neurosis and psychosis. Even though that has since been disproven, the name hasn’t changed although that is a popular idea. Suggestions include ‘Emotional Intensity Disorder’ and ‘Emotional Regulation Disorder.’

The symptoms include:

  • Intense fear of abandonment
  • Intense, unstable relationships
  • An unstable sense of self
  • Impulsive, self damaging behaviour
  • Suicidal ideation and self harming behaviour
  • Intense, unstable moods
  • Feelings of emptiness
  • Intense feelings of anger
  • Paranoia or dissociation when under stress

I related to a lot of this: the intense emotions, the fear of abandonment, the shifting sense of self. But on the other hand I’m too anxious to be impulsive or get angry with someone. There were enough connections to keep investigating though and that’s when I discovered the quiet presentation of BPD. Where the classic presentation lashes outward, quiet borderlines internalise, blaming or harming themselves. Their fear of abandonment can make them people pleasers and they struggle with feelings of isolation and loneliness, at a higher risk of depression than the classic borderlines. This discovery changed everything; I related to almost every experience I read and that gave me the confidence to pursue it as a diagnosis.

Despite the considerable stigma around BPD, I’ve had a really good relationship with my diagnosis. After so much anxiety and uncertainty, it was empowering to have a name for my struggles and it allowed me to get the support I needed. I’m aware of how lucky I am to have found the right people but that wouldn’t have been possible without the diagnosis.

Having said all of this, my diagnosis has been causing me a lot of anxiety of late. At the end of a session, my psychiatrist made what was probably, to him, an offhand comment about my collective diagnoses, that I might not need the BPD label anymore. I was too overwhelmed by a torrent of emotion to respond before the session was over – even a short session can take me days to process – but then the anxiety began to sink in. The idea of losing it – this necessary, hard fought piece of my identity – was terrifying. Is terrifying. This label explains a big part of my daily struggles and revoking it would be so invalidating, like saying that it isn’t happening, like my difficulties aren’t significant enough to even earn themselves a name. That thought of that happening is devastating.

The symptoms still feel very present to me. I feel things so intensely; they’re like physical forces acting on me. If I’m happy, sunlight is bursting out of me; if I’m sad, my ribcage is collapsing and I can barely breathe for the pain; if I’m angry, I feel like it’s strong enough to bring down buildings. They crash over me like waves and I’m overwhelmed by this panic to get back to the surface. It’s very stressful. I read somewhere that people with BPD are constantly in crisis and I definitely relate to that. Every emotion flares with life or death situation strength and it happens over and over again. They can swing so violently that it makes me physically sick and it can feel like there’s no solid ground to stand on. It’s exhausting. I also feel the emotions of other people, particularly sadness or pain, and it can take hours or days to recover from them.

“Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.” – Marsha Linehan

I’ve talked about self harm a couple of times on here (here and here) and this is my best description of it:

“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.” (x)

Another example of overwhelming emotions…

The fear of abandonment is ever-present, willing or unwilling. The thought of it causes me to spiral into panic so intense that I’m unable to function. Indefinitely. I’m always running, running away from this black hole that’s trying to pull me in. Past abandonments have left me unable to talk or eat or do anything for weeks and it’s taken years to recover from them fully.

I struggle with a deep feeling of emptiness and I sometimes feel like my soul is empty, which feeds into the feeling of having no idea who I am. I feel like I have no real sense of self that’s mine: who I am seems to change according to who I’m with. I take on the traits of others, becoming loud and joke-y with one person and quiet and introspective with another. I don’t know what is actually me. I know small things, like ‘I like flowers with symmetrical petals’ and ‘comedies make me strangely sad’ but I don’t know the big things, like whether I’m a good person or a reliable person or an extraordinary person. If anything, I feel like a child, like I’m stuck as a child while all my friends turn into adults. I can’t cope on my own or look after myself reliably. I feel so intensely sensitive, like I’m too vulnerable for the world I live in and I get too overwhelmed to function properly.

To take this diagnosis away would be to say that this is normal, that I have to just live with it, regardless of the pain it causes me. To take this diagnosis away is to say that I don’t need support and that I should just ‘get on with it.’ That is so invalidating and so upsetting that just writing it brings tears to my eyes. That is why this diagnosis is so important to me and why taking it away would be so traumatic.

All of this is very scary to put out into the world but I feel like the only way to make progress and move forward is to put it all out there and be honest. It’s almost painful, like removing armour that I’ve been wearing so long that it’s fused to my skin and I’m peeling it off with my fingernails. But it feels like the right move. Maybe, in doing this, I’ll start to see change.

“People with BPD are doing the best they can, and they still have to change.” – Marsha Linehan

There’s more information about BPD here and some excellent accounts of Quiet BPD here.

Some Social Media Favourites

Lately I’ve been seeing a lot of articles and blog posts about unplugging from technology and practising being present and living in the ‘real world.’ I’m not anti doing this. If you think it’s healthier for you to spend less time on social media and have or are taking the steps to do that, then that’s great. Figuring out ways to take care of yourself is always a positive thing. But I find it so irritating when people act as though social media is the enemy of mental health and self care because it’s just not that simple. It has its flaws, of course, but I think its value to those struggling with difficulties like depression and anxiety and so on (there are obviously more but these are the ones I feel qualified to talk about) can get overlooked. It allows us to connect in the middle of something that is incredibly isolating and that is invaluable. It can be life saving.

These are some of the accounts that bring me joy or help me when I’m struggling…

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Matt Haig – While I did struggle a bit with ‘Reasons To Stay Alive,’ I really respect Matt Haig and love his presence online. His posts range from moving to funny to encouraging. This is one that particularly spoke to me:

Behindthescars_ – I’ve written a post about Behind The Scars, a photography project set up by Sophie Mayanne (you can find that post here). Seeing people be their authentic selves and find new strength is really amazing and inspiring.

JuniperFoxx – As a kid, I LOVED animals and I daydreamed about having a pet fox so I absolutely love this account. It makes my day to see a new photo or video of these gorgeous creatures.

Laura Greenway – Laura is an incredible artist and I feel very lucky to call her a friend. She makes beautiful, thought provoking pieces to raise awareness and reduce stigma around mental illness. I love pretty much everything she makes but this one is a particular favourite and I was so sad not to experience it first hand:

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Really really hard to get a good photo of this, it’s more of a piece that you need to see in person, but today I installed my newest piece of work entitled ‘Baggage’ as part of my current residency at THAT Gallery Basingstoke! A little different from my usual, this piece employs the audience as the performer, encouraging you to walk amongst the 80 tags that hang from the ceiling and be surrounded by my own thoughts. The piece explores intrusive thoughts, and features a variety of day to day intrusions that I suffer with. A huge thank you to my amazing art team @mattglenart and @corvidaecrochet who helped for the best part of 4 and a half hours to install this piece. #art #artist #artwork #contemporaryperformance #fineart #modernart #contemporaryart #conceptualart #performanceart #mentalhealthart #mentalillness #mentalhealthawareness #anxiety #intrusivethoughts #automaticwriting #textart #writing #contemporaryartist #ocd #liveart #installationart #artistresidency #thatgallery #basingstoke

A post shared by Laura Greenway (@lauragreenwayartist) on

Petroom – While this account isn’t at all deep or meaningful, it makes me smile and even laugh on a daily basis. Sometimes we need thoughtful advice or inspiring messages and sometimes we need cute animals with funny captions.

YOUTUBE

Anna Akana – I’ve talked about Anna’s videos before (here and here) but I had to include her in this post. Her videos are beautifully crafted and incredibly succinct in their messages, many of them about mental health with real, usable advice. I also love her sense of humour and the short skits where she plays all the characters.

DudeBabe – Lauren is one of my favourite people on YouTube at the moment. Her videos are raw and honest and she posts almost every day, about her life and her experiences with an eating disorder. Food is a daily struggle for me so I find her videos really helpful but mostly I’m just really inspired by her openness.

This video is my favourite: it gives me hope that, one day maybe, I can have this sort of positive, freeing experience with my mental health.

(EDIT: I wrote this blog post before Claire Wineland died and although that doesn’t change whether or not I’d include her in this list, it added a weight to this post that I never expected when I started writing it. And what I wrote about her, it was true then and it’s true now. I just wanted (and needed) to acknowledge all of this.)

Claire Wineland – I’ve talked about Claire before (here) and introduced her channel (here) but I couldn’t not include her on this list of helpful and inspiring social media accounts. She speaks so eloquently about some really tough stuff and she always inspires me to be a better person, to be a positive force in the world.

Lucy Moon – Lucy is a vlogger and makes all kinds of videos, from fashion and make up to food to chats about therapy (that is a particularly good video). She also does an ongoing series of videos called 168 Hours, where she documents a week in one video. I find all of her videos really calming to watch. There’s something very reassuring about the way she talks.

TrichJournal – I’ve talked about Rebecca before (here) but I still want to include her account here. Having someone talk so eloquently and thoughtfully about hair pulling, about a disorder that is so rarely talked about, was incredibly validating and strengthening and helped me to stop pulling the first time. Plus I find her voice so calming. I’m linking her Trichotillomania channel here but I also love her ‘main’ channel, where she talks about lots of different stuff, including mental health, hoarding, make up, her cats… Many, many things.

Claudia Boleyn – I’ve watched a lot of YouTube videos about BPD and Claudia’s are my favourite by miles. I’ve talked about her videos before (here) and there are others that deserve their own posts because she describes it all so, so well. She’s thoughtful and eloquent and her videos mean so much to me: for the first time, I didn’t feel alone in this.

Haley Pham – I found Haley through her dance videos. I absolutely adore her dancing; I find it so calming. If I could have her dance for one of my music videos, I absolutely would. One day maybe. She’s also completely hilarious.

This post was deceptively hard to write. When writing about other people and their work, I get really anxious that I’m not doing a good enough job, if that makes sense. I love all of these people and want to reflect all the good they do – I’m scared I’ll do them a disservice. So I hope I did an okay job and that you guys have enjoyed this. Are there any social media accounts you think I should check out?

Tomorrow, I’m heading back to my university for an event about social media and mental health, which I’m really excited to be a part of. Maybe I’ll write a blog post about it…

Getting A Diagnosis – The Mental Illness Edition

This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.

I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the mental health diagnoses.

My mental health problems became very acute when I failed an exam at sixth form in March 2013. I was eighteen and it was the first time that had happened. There’s a lot of stuff behind why that was the breaking point but I’ll talk about that in a different post. Otherwise we’ll be here forever; I’m already splitting this post in half. I hadn’t been oblivious to my mental health up until that point but I hadn’t recognised the signs for what they were; my knowledge of mental health had been pretty limited. But I’d always felt like there was something wrong with me (I now know that it’s different rather than wrong but that’s how it felt and sometimes still does feel) and I know that my depression and anxiety had been building up to that moment, that critical incident.

After that, I started seeing a psychiatrist that a family member had recommended (my GP had been unhelpful at best and distressing at worse). He diagnosed me with Clinical Depression and gave me an anti-depressant called Paroxetine to try. I don’t have enough experience to judge whether he was a good psychiatrist or not but I don’t remember feeling particularly supported by him. I only saw him a few times before I switched to a psychiatrist closer to where I lived. The Paroxetine made me incredibly sleepy; it was like they put me into a waking sleep that I still don’t feel I’ve really woken up from. I switched to Sertraline but that was even worse: I felt like a zombie and that was so upsetting that I (unwisely) stopped taking it cold turkey. That was a Bad Move, such a bad one that I still capitalise the first letter of each word. For a while I was very dissociated and then my anxiety came back, even stronger than it had been before. So I was a bit put off by medication but the diagnosis was helpful and I started going to CBT.

That ended up not being the right thing for me and the energy it took was just too much so I quit, not forever necessarily but I needed a break and we wanted to explore some of the other options. I tried several other things over the next year before deciding to try medication again. Both that first psychiatrist and the CBT consultant had been private but I couldn’t get the NHS to help me. I have to say here that I have so much (SO MUCH) respect for the NHS. It has saved the lives of several of my friends and I will defend it to the death but I don’t feel it has yet got it right when it comes to mental health. In my case, my anxiety was so bad that I found it incredibly difficult to talk to people I didn’t know. My Mum would explain the situation but we were repeatedly told that if I wouldn’t talk they couldn’t help. That was very distressing. Logistically I understand that it’s more difficult to communicate if a person can’t talk but that’s not an excuse to refuse care. The not talking was a result of my anxiety, which falls under their job description. They should’ve helped me. They should’ve at least tried. But they didn’t and I was struggling so much that we were forced to go private. I am endlessly, endlessly grateful that my family have been able to make that possible. It has, without a doubt, saved my life.

We found a new psychiatrist in the summer of 2014 and after such a horrible year, I was determined to make it work. I walked into his office, sat down, and started talking. I still don’t know how I did that. I was just as anxious as I had been before but I guess that’s desperation for you. Maybe it was my survival instinct. Anyway. My psychiatrist has since told me that he couldn’t believe I had such bad social anxiety because I had been so articulate and direct. Again, I’m putting that down to desperation (and I wouldn’t be surprised if the ability to mimic ‘normal’ behaviour – something that many girls with autism have learnt to do – came into play here too). But as I told him more, he started to understand where I was coming from and what I was dealing with. He put me on Phenelzine, which made a massive difference (I’ve written more about that here) and we continued our sessions so that he could get as much information as possible.

I wanted him to give me a diagnosis. I wanted a name for the thing (or things) that had so much power over me. I wanted to know what was really me and what was this indistinct, suffocating black shadow. I thought he’d have me do a load of diagnostic tests and questionnaires and then give me his findings but it felt more like therapy, but with a focus on my past experiences (rather than strategies to move forward). He didn’t seem in a hurry to find the answers and I didn’t know how to fast track the process. Eventually we got the deadline I wanted: my university said they couldn’t help me until they had an official diagnosis. But again, it wasn’t how I’d expected it to be and again, it was incredibly slow. Throw in that I’d just started university (which came with new people, new classes, and commuting into London) and I was under a lot of stress, as you can probably imagine. How I didn’t have more autistic meltdowns, I have no idea.

I couldn’t just do nothing. I spent hours searching the internet, looking for anything that might explain my experience. I examined diagnostic criteria and read medical papers; I scrolled through forums and took diagnostic tests. I’ve read a lot about the back and forth on self diagnosis (something I definitely want to discuss in more depth at some point) but for me, I needed a professional diagnosis, both to get the help I needed and to validate how much I’d struggled. Grouping my symptoms together and trying the strategies advised for whatever label fitted that group wasn’t going to be enough. So I used those test results as a starting point. Eventually I came across Borderline Personality Disorder and more specifically, the ‘quiet’ presentation of BPD. This means that they have many of the same symptoms (including mood swings, problems with self worth, unstable identity, and difficulties with relationships) but rather than ‘acting out’, they ‘act in’: they direct their negative emotions inwards, hiding them rather than projecting them onto others. Many struggle with issues around self hatred and self harm. If they lie or manipulate, it’s to protect themselves from perceived abandonment and they may avoid or distance themselves in relationships because they don’t want to be abandoned or because they feel they don’t deserve those connections. The ‘quiet’ presentation made a lot of sense to me because while I struggled with many of the problems associated with BPD, I rarely lash out so this felt like something to explore.

So, buoyed by momentum that discovery had given me, I took it to my psychiatrist. And he shut me down straight away. He said that I didn’t fit the criteria and moved on to something else. I didn’t understand: I was struggling with so many symptoms associated with BPD, almost all of them when you factor in the ‘quiet’ presentation. I couldn’t believe that it wasn’t worth, at the very least, a little bit more discussion. And at the end of the session, he said that he thought we’d done all we could do. I was devastated. And incredulous: we hadn’t achieved anything. If that was it, I was back to square one. Or minus one after everything the process had taken from me.

That session sent me into the worst place I’d been and after a particularly horrific meltdown, I spent several days in a fragile, barely responsive state. But once I recovered from that a bit, I got to work. I went back through my research and symptom by symptom, anecdote by anecdote, I wrote down everything I related to, everything I’d experienced, anything that could be relevant. It wasn’t that I was certain it was BPD, it was that I was certain it was something. This seemed as good an explanation as any and my psychiatrist wasn’t offering anything better.

When I was done, the document was seventeen pages. I’m pretty sure it was longer than my dissertation for university. And then we went back. I presented him with all my research and something very surprising happened. I’d hoped he’d accept it as something to explore and not only did he do that, he admitted he’d been wrong and apologised for dismissing it. Even now, that feels like a very important moment. In my experience, medical professionals aren’t naturally inclined to apologising, let alone admitting to being in the wrong. And I’d been ignored for a long time. When it came to my health, physical and mental, doctors had always looked at the most obvious option and then, when that didn’t fit, they’d just shrugged their shoulders and brushed me off. So this was a big deal.

And at the end of that session, I had my diagnosis. Or more accurately, my diagnoses. He pulled together everything he’d learned about me and diagnosed me with Borderline Personality Disorder, Anxiety, Social Anxiety, Depression, and OCD. It was a very strange experience. Momentous and anti-climactic at the same time. I felt light enough to float away but so exhausted and heavy that I wasn’t sure I could get out of my chair. I felt like I might burst into tears at any moment but I had this weird, hysterical urge to laugh. I felt invincible and incredibly fragile at the same time. Very strange.

Finally getting names for the monsters I’d been struggling with was incredibly validating. It was real. I wasn’t ‘crazy’ or ‘over dramatic’ or ‘too sensitive.’ It also made it real to everyone else. And although part of me was steadfast that something was wrong, I had started to doubt myself, having been dismissed by so many people. I was constantly fighting against falling into a well of despair, of fear that this was just going to be how life was for me. But the diagnosis confirmed that they were problems and most problems have solutions of some sort.

The diagnosis enabled me to get the support I needed at university and gave us some idea of what kind of talking therapy might help. Dialectical Behaviour Therapy (DBT) is recommended for people with BPD and that’s what I’m still doing, about three years later.

(I have no relevant photos for this post so here are a couple from around that time.)

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.

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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