Backwards Binoculars

Over the years, I’ve had periods of feeling really far away. It often overlaps with my bouts of depression but sometimes it creeps in out of nowhere and I feel completely lost, untethered from everything around me. It fades in and out like a fog, sometimes with no warning and often there’s nothing I can do to dissipate it or avoid it. It can be really scary, especially when it first started to happen, but at the same time, it’s like I can’t really feel that fear or any of my emotions. I’ve described it in different ways but they all describe the same feeling: feeling completely disconnected from myself. But I thought I’d include a few of those descriptions because they give more of a sense of how it feels:

  • It’s like looking backwards through binoculars so everything seems really far away when it’s actually close. Sometimes I can almost see the black tunnels that would be the inside of the binoculars. This is the way I usually describe it; I think it fits the best.
  • I feel like I’m five miles back inside my head. I can’t reach anything or anyone and it feels like no one can hear me, the real me.
  • It’s like watching everything happen and feeling like it would continue as normal if I wasn’t there, almost like people wouldn’t notice if I disappeared. They’ll keep talking, leaving spaces for me and responding to what I would’ve said if I was there.
  • Similarly, it can feel like I’m invisible, like people will look right through me.
  • It feels like I’m stuck behind glass, like there’s glass between me and everybody else. I am physically separated from everyone. This is another one of my ‘favourite’ ways to describe it.
  • A variation of that is feeling like I’m wrapped in cling film: separated from everyone but also trapped. It makes me feel like I can’t breathe.
  • I feel disconnected from my life, my body, like I’m in control but it’s not mine. I’m moving my limbs but they feel oddly numb, thick and heavy and clumsy.
  • One of my earliest memories of this feeling is feeling like I was out of sync with everyone else. That’s a very lonely and uncomfortable feeling.
  • Sometimes it feels like I’m underwater. It’s like I’m surrounded by something other than air and there’s more resistance when I try to move.
  • The most recent description is that I feel like I’m sleepwalking and can’t wake up. This one overlaps with how I feel when I’m really depressed so it’s not the most reliable analogy, if that makes sense. It fits both.

To be completely honest, I’m not sure what causes it, given the overlap of the different mental health problems I struggle with. This is something I have a lot of anxiety about, not being able to pinpoint where individual problems come from. Everything’s connected to everything else. Everything influences everything. But from my own reading, it seems to be common in depression and in Borderline Personality Disorder. It’s often a coping mechanism for stress or overwhelming emotions. The Mind website has a great page about this. My experiences line up best with the description of ‘Depersonalisation’.

I still haven’t found anything that does much to help it but there are a few things that give me a few seconds of relief, of connection. Usually, it’s about tapping into my senses. That seems to bring me back to the world a little bit. So things like opening windows, sitting in the sun, touching leaves or flowers, stroking a pet, having a cold shower or holding something cold… they don’t fix it but they do have a positive effect. Even if it’s tiny, they do create small positive spikes in my mood. They’re like stars in a suffocatingly dark sky. With this, it’s more about getting through it than trying to fix it. It’s about creating one moment after another to carry you through to the other side.

I want to add that I’ve also used self harm to ‘wake myself up’ from this. I’m not advocating it; it’s dangerous and damaging and really difficult to get free of. But if nothing else, I’m honest and it has helped. When I’m in a really bad place, I don’t want to hear that I shouldn’t do it because it feels like the only thing that helps but when it’s not quite so bad, I try really hard to find other ways to cope. I try the things I’ve listed or I try to distract myself. I don’t want to get too far from the point of the post so I’ll come back to this in another post but I felt like I had to include it here.

Friends and family have asked me what they can do to help and if I’m honest, I don’t really know. It can be hard to think about that when I’m just trying to get through it. But I do want to help them help me. At some point, I will write more about this, but I do find it really helpful when the people around me let me set the pace and decide what I can and can’t manage. Sometimes a push is helpful but in this situation, it isn’t. A sense of control grounds me a little bit. Plus, there are some things that are just really hard to manage when you feel like you can’t connect to your emotions. For example, I find it really hard to write songs and be creative when I feel so disconnected from everything. So being able to (and feeling safe to) adapt my activities does help. And talking. Talking it through, figuring out solutions, letting off steam. That really helps.

Two Levels of Mood

Living with depression is hard. Yes, I know, I’m stating the freaking obvious. But I want to write about something that doesn’t come up that often, in my experience at least. And when I say ‘living with depression’, I mean going through repeated bouts of depression over a period of time. I’m not diminishing the difficulty of going through an isolated experience; I just want to point out something specific to the continued one.

Being at your lowest is excruciating but it’s simple, when it comes to the complexity of emotions. Depression is overwhelming; it blots out everything. The world is one colour. But as you start to move out of that place, it becomes emotionally confusing. A lot of you is still depressed but there’s also a part of you that’s trying to move forward. And that conflict is exhausting. Your emotions are constantly clashing and that takes up so much energy.

I recently landed in the lowest place I’d ever been. I feel like I say that every time but I know that this was the worst I’d ever felt. I had a very emotionally traumatic meltdown – again, the worst one I’ve had – and ended up sitting in the middle of my local park, crying my eyes out at eleven o’clock at night. And it was that heaving kind of crying where it feels like it’s coming from a place inside you that’s deeper than physically possible. It was horrible and when I woke up the next morning, I was in such a deep depression that I couldn’t do anything. I literally couldn’t. I lay in bed all day, staring at the wall. I felt completely hopeless. I couldn’t see the point in anything. There was no point in trying to be happy, in trying to do anything, because the only real thing is misery.

It took days to start functioning again (move around, interact with people, eat, etc), but I was still firmly locked in that point of view. I couldn’t see the point of anything but the oppressiveness started to lift and other emotions started to creep in. I was able to smile again and sometimes I’d even laugh and that was really hard because I still felt so hopeless. It felt wrong. I didn’t feel ready to be okay.

I feel like I have two levels of mood, my surface mood and my inner mood. The labels speak for themselves but I want to elaborate a bit further. My inner mood is what I feel at the centre of myself (my automatic thought was to name it my ‘real’ mood but I know the surface mood is real too – please bear with me: words are hard!) and at the moment, that is depressed. If I had to choose one emotion to associate with myself, it would be a sad one, like depressed or disheartened. My surface mood reacts to outside stimuli: good weather, spending time with people I like, a new episode of my favourite TV show. Those sorts of things do create spikes in my mood. It can be really easy to brush those moments off because they feel so wrong when I’m depressed. But they’re both real and both deserve to be recognised. That’s why I like the two levels of mood idea. By having two levels, one emotional reaction doesn’t invalidate another. I can feel really depressed and kind of okay – even optimistic – at the same time. It’s too simplistic to think that we only feel one emotion at a time but when they’re so opposite, it just makes the whole thing more difficult, more confusing, more exhausting.

The only time the two seem to synchronize is when I’m really, really depressed. It sounds sad when I put it like that but right now, it’s the truth. I know that my surface mood can change so hopefully the inner mood can too. Hopefully I’ll reach a point where it’s not so low.

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The Importance of Pets

The last post was a heavy one with lots of emotional stuff in it so I thought I’d go for something that was a bit more light hearted this time – try and maintain a kind of balance. So here we go. The animals in my life have had a really big impact on my mental health so I thought I’d introduce them and talk a bit about the positives of having pets when you struggle with mental illness.

This is Lucky, our thirteen-year-old Labrador. We first met him when he was two days old and we’ve had him since he was about eight weeks old. He’s endlessly friendly and enthusiastic. One of my favourite things about him is how unashamedly excited he gets about everything: people arriving, food (even though it’s the same thing everyday), any kind of attention. It’s a good little reminder to appreciate the good things, even if they are everyday occurrences. As he’s gotten older, he’s become very sensitive, especially to people’s emotions. At it’s most extreme, he’s left the room when people on TV get upset. Poor boy. I can relate to that.

And this is Lucy, my two-year-old cat. She’s all energy and adventure, in the daylight hours anyway. Come the evening, she’s very happy to curl up on my bed with me. She sort of reminds me of a teenager that doesn’t want to be seen with her parents because it isn’t cool but once there’s no one around, she enjoys a good cuddle. She loves Lucky and often tags along on the evening walk around the block. I absolutely adore her. She’s incredibly calming to watch and play with; she’s so present and that’s really good for my anxiety. And having her sleeping beside me helps me to sleep because I can focus on her breathing (and purring) and block out any anxiety I have.

She also had kittens last year, which was a great holiday from real life. They were gorgeous and when I was watching them or playing with them, everything else fell away. It was like the world outside my bedroom didn’t exist. They were the only thing that helped me when Christina Grimmie was killed. I’d been watching her videos for years and she was the same age as me; it was very upsetting (and I’m still dealing with the emotions of that but I’ll save that for another post). Watching them play and wrestle and explore my bedroom with such focus and such fearlessness was very soothing. I’m so grateful to have had them for that period of my life. And I was very aware that, as one of the few humans in their lives, I was affecting who they would become, consciously or not. It made me feel like I was making a difference, even if it was only on a small scale.

But back to Lucky and Lucy. They frequently accompany me to therapy (although not together). Neither are actual therapy pets but having one of them with me often helps, especially when we’re talking about really tough stuff. They can be a distraction, a tension diffuser, a comfort.

So there you have it: my animals. They are so important to me and have such an impact on my life that I couldn’t not write about them. I hope you enjoyed this and if you need me, I’ll be curled up with either or both of them.

BPD and Feeling Abandoned

Feeling abandoned is a big thing when it comes to Borderline Personality Disorder. And events as everyday as someone not immediately responding to a text can trigger that feeling. The smallest slight can be incredibly upsetting and anything bigger can feel devastating. It’s never ending and exhausting. And with the fear of being abandoned hanging over you, relationships (of any kind) can be very stressful. They can feel like a waiting game, wondering how long it will take for the other person to give up on you.

As someone with BPD, I feel emotions very strongly and when something upsetting happens, it feels like I’ve been hit by a massive wave and it’s all I can do to find my way back to the surface. The emotion overwhelms me and there’s no room for logical reasoning. It doesn’t matter what else is going on; all my energy is taken up trying to process all of that feeling. It can take weeks to recover and I feel more fragile each time.

And what makes it more difficult is the fact that it’s not completely irrational; there is ‘evidence’ to support the fear. People have abandoned me in the past, both voluntarily and involuntarily, so whenever I try and talk myself out of the panic, my BPD lays out all these examples, ‘proving’ to me that I will always be abandoned. It’s an exhausting cycle.

I’m not going to go through my history of feeling abandoned, example-by-example, but there is one experience that I want to share. I think it’s too important to leave out. A few years ago, someone really important to me cut ties when I was in the lowest place I’d ever been (something they were aware of). I felt completely abandoned and it had a massive impact on my mental health and view of the world. I was so hurt and so confused and for a long time, those emotions overwhelmed everything. I felt broken. But slowly, that weight lifted. It took two years but I’m finally free of it. And that’s amazing. But it’s not the end of it. That experience has affected me, especially when it comes to my relationships and my anxiety around them. And like I said, it’s hard to talk myself out of that fear when I feel like I’m about to go through all that again.

I’ve wanted to write about this for a while but I wasn’t sure how to frame it, if that makes any sense. But a conversation with one of my best friends brought all of this to the surface.

So let me tell you a story:

One of my best friends had just come back from a trip to the US and was desperate to go back. I was in a pretty fragile place already (dealing with another situation where I felt like I was being abandoned) and watching her plan her next trip abroad felt a lot like she was abandoning me. I didn’t want to say anything and I felt guilty for feeling the way I did: she was building her career and she was so excited and here I was, wanting her to stay. But in the end, I had to say something. We’ve always talked everything through so, even though I was terrified of sounding needy and pathetic, I reached out and told her how I was feeling. She knows a lot about my mental health difficulties so I told her how I struggle with feeling abandoned and that I might need some extra reassurance around her upcoming trip.

(I want to add that although it might sound easy, it wasn’t. Part of me – a big part of me – was convinced that expressing these feelings would be the ‘final straw’ and that she would abandon me on the spot, that I had finally become too much to deal with. This is something that I think is often misunderstood about BPD. This reaction is not because of the other person; it’s because of the BPD. The other person could be the most reliable person in the world. It doesn’t matter. It’s the BPD telling you that everyone will leave, that you’re not enough to make the other person stick around. So defying that and telling my friend how I felt was very, very scary.)

And this is the important bit: how my friend reacted. Instead of telling me I was being ridiculous or brushing off my request, she responded compassionately. She told me not to feel pathetic or guilty, that she understood why I was feeling the way I was. She asked me how she could help, and said that she would do whatever she could to make it easier for me. She said, “I am not going to leave you.”

It was such a relief that I burst into tears. It meant (and still does mean) so much to me. She validated my feelings, asked me what she could do, and gave me the reassurance I needed. I wish everyone responded this way. Perhaps ironically for a condition with such close links to invalidation, these feelings often get written off as being oversensitive or overdramatic. And in my experience, that only makes it worse. Things are better now that the important people in my life understand where these feelings come from; before the diagnosis, the only explanation was that I was very sensitive and therefore needed to ‘toughen up’. It was a fault. And that’s what I thought too. But now that we understand it, we know how to handle it, how to approach it.

I will likely need to hear this again and again to combat my fear of being abandoned but that doesn’t minimise the importance of this moment. As I’ve said, change is a series of moments like these, moments I hold very close, like charms on a charm bracelet.

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Side Effect City

Just over a month ago, I started taking Venlafaxine for my depression. I’ve tried lots of different anti depressants in the past, many of which I had a bad reaction to, so I was nervous. Weaning myself off the Phenelzine was hard and I was very, very depressed but somehow, I reached a point where I felt ready to feel different. It was a bit like breaking the surface after being underwater. I was, and still am, desperate to feel better.

Week 1

I started on a very low dose, half the lowest therapeutic dose, so that my body could get used to it. But despite that, I felt the effects straight away and incredibly strongly. I was very nauseous. It was so bad that I couldn’t really concentrate on anything else; all my concentration was focussed on not throwing up. It made me dizzy and I was tired all the time. I did check with my psychiatrist to make sure it was okay to keep going with it and he said it would pass so I focussed on tolerating it.

The other immediate change was my sleep. I went from struggling to wake up before eleven (and I mean really struggling: it felt like I was drowning) to being wide awake at eight o’clock in the morning. It was bizarre.

Week 2

The nausea faded around the beginning of the second week, which I was very grateful for. My mood, while still pretty low, was stable, and I was still waking up much earlier than I had been able to previously. However I started having headaches and I was exhausted all the time, which made it very hard to do anything.

Week 3

In the third week, I went up to the lowest therapeutic dose. This caused a pretty dramatic reaction. For the first few days I was so tired that I fell asleep in the middle of the day, something I haven’t done in years. But despite that, I was waking up even earlier, between six and six thirty am.

By the middle of the week, I couldn’t concentrate at all. I couldn’t hold a conversation, I couldn’t follow the storyline of a forty-minute TV episode, I couldn’t even play a game on my phone… That was scary, but I couldn’t even really feel that because I couldn’t seem to process the emotion. I started to feel faint and very shaky and that went on for several days. If I stood up for longer than a couple of minutes, my legs started to shake and my hands shook so badly that I couldn’t hold a pen. That was very unpleasant.

Week 4

Most of the fourth week was lost because of severe, unexplained leg pain that had me in tears. My psychiatrist didn’t think it had anything to do with the medication and DVT was ruled out but other than that, we don’t know what caused it. I’ve been taking painkillers since and it’s been better. So that tired me out and overwhelmed everything else. But since then, the shaking has mostly stopped and I’m back to waking up between eight and nine in the morning.

This week is the first where I’ve felt different mentally and emotionally while taking Venlafaxine. I wouldn’t say I feel better but I’ve been feeling a bit lighter. That feels very strange and a bit scary. With this new lightness, I’ve been feeling a bit lost which I’ve written about here. I’ve been so depressed for so long that I can’t remember what it’s like to not be depressed. But despite all of those confusing emotions, I am pleased that this medication is starting to work. It will probably take another month or so to really know how it’s affecting me but it’s looking positive and I’m really grateful for that.

The Big White Room

Since taking the Venlafaxine, I’ve felt different. I’ve felt a little bit lighter, mentally and emotionally. In some ways this is better but in some ways it’s not. Depression is such a heavy feeling but now I feel a bit like I’m floating away. I feel kind of lost, or like I’ve lost something really important. In a weird way, I miss feeling depressed. No, that’s not right. I don’t miss it, but I feel kind of lost without it. And feeling like that makes me very anxious.

Objectively I understand why I feel this way: I’ve spent a lot of time feeling depressed. It’s familiar. It’s certain. It’s a world where everything is in focus with clear and sharp edges. Now the edges are fuzzy. I feel like I don’t know who I am or what I’m doing. And emotionally, I’m finding that really hard to get my head around.

I know who I am when I’m depressed. Those emotions overwhelm me, they define me. Depression takes over my personality, or becomes the biggest part of it. It affects everything. It’s like depression takes up all that space. But now, there’s suddenly all this space that wasn’t there before. It feels a bit like when you stand in the middle of a really massive empty room. It’s quiet. It’s cold. It makes you feel so small and lonely. And if I look at myself in that big white room, I don’t know who I am. I don’t know if I’m optimistic or pessimistic. I don’t know if I’m a good person or a bad person. I don’t know if I’m loud or quiet. I know some little things but not the big things.

I do recognise the opportunity here, the opportunity for things to be different: to fill the room with new things. That thought is both thrilling and terrifying. But I’m not sure I’m there yet: I’m still pretty overwhelmed by how big this room is, how empty it is. I don’t know where to start.

I’ve thought a lot about identity, both mine and in general. It’s something I’ve struggled with for a long time and something I want to write more about. But I think your identity is made up of the things about you that don’t change, the fundamental aspects of your personality. I don’t know much about myself but I do know that I’m very sensitive. I’ve always been sensitive and I can’t see it ever changing. So I guess that’s a part of my identity.

I’m not sure my depression is gone but I’m not drowning in it anymore. And that’s scary. I’m so used to it that I’m not sure who I am without it. When I’m depressed, that big white room is so dark that I don’t know that all that space is there, so I don’t even know the room is that big. But now I know it’s there and it’s very compelling. I keep turning it over in my mind. As I said, I know who I am when I’m depressed. I want to know who I am when I’m not. So I guess that starts now. It’s a brave new world.

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One Woman With Autism

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.

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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.