Getting A Diagnosis – The Autism 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 ASD diagnosis and follows on from the one about my mental health diagnoses. If you’ve read that one already, you’ll know that it took several years to get to that point.

During our search – mine and my Mum’s – for an explanation as to why I was struggling so much, Autism came up several times. We didn’t pursue it straight away because I didn’t fit what we knew of it and because multiple health professionals had dismissed it. So we focussed on the mental health perspective and managed to get those diagnoses in January 2015. But it kept coming up and after talking to practically everyone we knew, we ended up at ASSERT, a local charity that supports people with Autism Spectrum Disorder. On their advice, we contacted the Brighton and Hove Neurobehavioural Service and that resulted in an assessment (in August 2015).

The assessment itself was pretty intense: three hours of answering questions about my life and my experiences, followed up by another appointment where it was all explained to me. The woman who assessed me was lovely, which made it easier, but it was exhausting. Afterwards, I received an eight page report with all the relevant information. I know I’ve already written a post about the presentation of Autism in women but this is the more detailed, clinical side of it, to give you an idea of what was asked and what went into getting an Autism diagnosis.

The questions – and the report – were broken down into several sections:


DEVELOPMENTAL HISTORY

As a child, me and my brother played make believe games that involved the creation of very elaborate worlds, with characters and histories, and they often lasted for months, if not years. My other staple ‘game’ was arranging my toy animals into “carefully crafted scenes.” I did this over and over again, in a “notably ordered and systemised” way.

I was incredibly shy and although my speech and language were ‘well developed,’ I did struggle socially. I didn’t have many friends but the friendships I made were incredibly important to me (“the very commonly observed capacity for young women on the spectrum to make very intense, uncompromising attachments to individuals”) and the loss of those connections was “deeply traumatic.”

I did well in school because I had “an unyielding need for perfection” and a “capacity for intense engagement in subjects.” No one (including me) noticed any difficulties because I was quiet and hardworking (“like many young women on the spectrum”) but having said that, I was absolutely exhausted by school. I’d get home, collapse on the sofa, and kind of zone out, almost leaving my body. Time would pass and while I was still functional, it felt like I was on autopilot until I ‘returned’ to my body. That was how I processed school and how it completely exhausted me.

The one thing that I did notice and struggle with was my absolute need to follow every rule: “Lauren has a lifelong sense of right and wrong and cannot deviate from rules.” I’ve always struggled with the way people seem to know which rules are important, who they apply to, and so on. And even when there was good reason to break a rule, I could not do it.

“Moving to the chaotic, unstructured, unfamiliar sixth form [was] deeply traumatic. It was at this point that her meltdowns and mental health became of acute, identifiable concern.” Couldn’t have put it better myself.

RECIPROCAL SOCIAL COMMUNICATION

“Although Lauren has worked hard to integrate socially, she has clear lifelong social difference.” Socialising has always felt incredibly complicated and stressful. “Lauren has the almost universal autistic sense of feeling ‘alien’ (or as if behind glass) from other people. She feels exhausted by the social world. People are mysterious and chaotic to her, and although she is highly observant of others and learns and copies social behaviours, the possibility of unpredictable social behaviour provokes acute anxiety. She shows evidence of the triad of impairment but this is scaffolded and obscured by her intelligence and vigilance.”

Eye contact is tiring and uncomfortable. It feels so intimate – too intimate. And I don’t know which eye you’re supposed to look at.

I’ve always struggled with making phone calls, particularly when it’s someone I don’t know. Because I’m only hearing someone’s voice, I feel like I’m not getting enough information to ‘read’ the social interaction and so I get really anxious about saying the wrong thing or getting overwhelmed and missing things. I can just about handle it with people I know, where I’ve learned the ‘conversational rhythm.’

It’s a myth that people with Autism aren’t empathetic. I’ve always felt like my empathy is overwhelmingly strong, to the point where it can actually incapacitate me. For example, after finding out that a friend was severely ill, I was so distressed that I was barely able to get out of bed for about three days: “[Lauren] is prone to fixating on helping people and is often very upset when this is not possible. Women on the spectrum are often highly sensitive to suffering in others and are drawn to the ‘caring’ role. This can leave them socially and emotionally vulnerable.”

I get overwhelmed very quickly, because I can’t process things as quickly as they happen. The best way I’ve found to process stuff (experiences, sensations, emotions) is to write everything down: “Lauren writes everything down in micro-detail and through this process she has learnt much about the human state and the social world that is not intuitive. The detail and perseverative nature of this recording is authentically aspergic.”

RESTRICTIVE AND REPETITIVE BEHAVIOURS (NEED FOR SAMENESS)

I’ve always had the intense focus and ‘restricted interests’ that people often associate with Autism. I’ve bounced from one to another to another my whole life. When I was twelve, I wrote a twenty thousand word story that I researched in “encyclopaedic detail.” I even knew the longitude and latitude of where all the characters were throughout the story. Every detail is important: “Authenticity is of enormous importance to her.” A truer statement was never made and it’s true for every part of my life, from my songwriting to the clothes I wear.

I’ve also always had a “strong need for sameness and routine.” I didn’t even really realise it until I was asked. Everything I ‘routinely’ do has a very precise order: “She has certain non-functional rituals that she needs to perform in order to feel safe and soothed.” And any change – big or small – can send me into a spiral of anxiety, which can lead to a meltdown. “She has a need for perseverative repetitive activity to soothe her anxiety and dampen the flood of intrusive information. She has the same TV programs on and listens to the same audiobooks again and again.”

SENSORY SENSITIVITY

I have always been “highly sensitive to sensory phenomena.” I struggle to manage and process se nsory information but with sound and taste in particular. But all of my ‘sensory sensitivities’ increase when I’m under stress.

“[Lauren] appears to be particularly affected by multiple streams of sensory experience: finding, for example, places where people gather cacophonous, overwhelming and she is swamped in anxiety about all the possible permutations of each person’s life.” When I walk down the street, I’m overwhelmed by the fact that every person I pass has favourite colours, foods they don’t like, phone numbers they can’t remember, important dates coming up, and so on and so on and so on. It’s beautiful and terrifying and exhausting.

One of my biggest issues sensitivity-wise is with food and I’ve struggled with it all my life. I’m very sensitive to taste and texture so I can only eat plain foods and I hate having different foods touch each other. I find pretty much everything to do with food overwhelming: the ingredients in a meal, the preparation of food, all the sensory information… This is apparently a common autistic experience.

“Some evidence of hypermobility which is a unifying diagnosis with autism.”

CONCLUSION

“The essential features of ASD as specified in DSM-V are persistent, pervasive and sustained impairment in reciprocal social communication and social interaction; and restricted, repetitive patterns of behaviour, interests, or activities and may be most apparent in difficulties in processing and responding to complex social cues. These symptoms are present from early childhood and limit or impair everyday functioning.” My assessor took in everything we’d told her and determined that I met the diagnostic criteria for Autism Spectrum Disorder, at level one, which is ‘requiring support.’ I meet all the difficulties likely to be experienced at this level.

“It is apparent that Lauren also has issues pertaining to personality disorder. She was vulnerable to the development of personality disruption due to the complexities of her developmental difference and her experience growing up (essentially as a ‘square peg in a round hole’) was sufficiently complex and invalidating as to cause her enduring distress and propensity for emotional intensity.”

Getting the diagnosis itself was very affirming but the conclusion of the report was also really positive: “She has amazing potential and I am really hopeful that, in time, this explanation will come to be a meaningful map for a resilient and contented future.”


This isn’t a complete report, just some snippets to give you an idea of what the session was like and some of the traits that make up an Autism diagnosis. It’s not a checklist or the ASD criteria. I just remember having no idea what was going to happen and the anxiety that that caused me. So if I can make it less scary for someone else, that’s something I really want to do.

(Again, no relevant photos but here are some from around that time.)

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.)

Life Goes On (Even When You Don’t Want It To)

Recently, I’ve been thinking a lot about how things change with time, how emotions change with time.

When I was nineteen, someone really important to me abandoned me without a word. I was already really struggling and it was completely devastating. For days afterwards, I just sat numbly in front of the TV with the volume up so loud that I couldn’t think. I couldn’t imagine a time when I wouldn’t feel so heartbroken. I couldn’t imagine how I would ever recover.

That was four years ago.

For a long time, that experience defined me. I wrote songs about it. I talked about it in therapy. It was part of every decision I made. It was the lens through which I saw the world. But slowly, it had less and less of a hold on me and then, about two years after everything fell apart, I realised that I’d completely let it go. That was amazing and so freeing.

And so I went on with my life, feeling lighter than I had in years. I felt like it had been taking up space in my body and with that gone, I had so much more space to engage and create and just live. I even got a little bit of closure (something I’d never really believed in as a concept): we met and talked and it was oddly satisfying to find that there wasn’t a good reason behind it – I’d never been able to think of one. So it was messy and intense but worth it. I didn’t need that experience to let it go but it was very satisfying to finally have all the pieces.

A couple of days ago, I realised that I hadn’t thought about it in months. I’d almost forgotten it had happened. That was a shock. And an epiphany.

It’s an oft-repeated saying that time heals everything and it always irritated the hell out of me, especially when I was a teenager. Everything felt (and still feels) so intense – every experience, every emotion – and I couldn’t imagine a time when it wouldn’t. But over time, I’ve watched the cycle of emotions play out and that’s been a revelation.

It seems that there are some things that you just have to learn for yourself and no amount of being told by someone else is the same as experiencing it first hand. And you have to live long enough for that cycle of emotion to actually take place. It’s only now that I can look back and truly know that time is the only thing that can lessen the intensity of those feelings (although it’s not unlikely that I’ll deny this the next time I’m overwhelmed with similar emotions). Every stage – from holding on to it, to letting it go, to really moving on – was a new experience and it was all ridiculously intense. But now I’m free of it, which is such an achievement. I had a lot of help but that’s something that I did and I’m really proud of that. For a long time, I needed to feel it and needed to hold onto it to make sense of it. But now I’m done. There are bigger, more important things in my life, good and bad.

Taking A Self Care Day

Within an hour or so of waking up, I knew I needed a self care day.

I’d started the day at the gym, swimming in the outdoor pool. It felt good to do but by the time I got out, I was feeling really anxious and fragile. I thought about it and talked to my Mum and decided that I needed a day to look after myself. I needed a little break from life, from all the big, hard stuff.

It was never going to be a particularly busy day. I had planned to do a couple of things in town but there was nothing urgent and I felt really low on social energy. Sometimes it’s worth pushing through, worth practicing opposite action, but sometimes it just makes more sense to focus your energies elsewhere. So I cancelled that stuff and headed home.

On my way, I popped into the supermarket and bought some treats for myself. I’ve been pretty good about eating healthily recently, which I’m really proud of given my issues with food. But we all need unhealthy stuff sometimes and that day was one of those days. I also bought some new notebooks, which always cheers me up.

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Once I was home, I headed to the living room and drew the curtains. I’ve never had white curtains before but I absolutely love it: you can draw the curtains and shut out the world but there’s still good natural light. It’s a little bubble in which I feel safe. I changed into my favourite T-shirt, put on a Harry Potter film for background noise, and got to work on the emails I’ve been avoiding. I was avoiding them because they were stressful but ignoring them only created more stress so I needed to address that. I just needed the right environment – a calm environment – to feel able to do that. And I felt SO much better afterwards. I also got caught up with my diary and my photo albums, both of which are my self care staples.

Another thing I was really worried about was my cat. She was spayed not that long ago and I just had this anxiety that the wound wasn’t healing properly. My Mum was taking our dog to the vet so I asked her to take Lucy with her. I have serious anxiety about going to the vet (probably from when we had to have my previous cat put down) which does need addressing but that wasn’t going to happen in a day and I didn’t want Lucy to suffer because of it. The vet checked her out and gave her a clean bill of health, much to my relief.

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It’s also a really good time to try and practice good habits, healthy habits. I’m trying to build several things into my daily routine (not that I really have a daily routine), including drinking the recommended amount of water, practicing my instruments, and making sure I do something creative. Without a day to stop and take stock of my life, it’s easy to get into a really frenetic cycle that just gets faster and faster until I inevitably crash. So, for me, it’s important to stop.

So there you have it. This is what I do in a self care day. Obviously it’s different each time because of what’s happening in my life but, for me, a self care day involves several things:

  • Calming my environment
  • Addressing anxieties
  • Assessing my routine and my habits
  • Feeling safe and comfortable

Sometimes that means curling up in bed with my cats and my favourite TV show and sometimes it’s replying to all my emails and so on that have built up. Sometimes it’s like an aesthetic instagram post with fluffy socks and candles and sometimes it’s ugly with tears and frustration. We all do it differently and we all do it differently each time. Self care is a very small title for a very big idea.

An Introduction to Amitriptyline

I have now been taking Amitriptyline for about six weeks so it’s probably time to take a step back and get some perspective. I usually look at it week by week but this time, that doesn’t really make sense. The effects (and side effects) have been fairly consistent…

I’ve been feeling overly emotional ever since I stopped taking the Venlafaxine and that hasn’t changed with the addition of Amitriptyline. Everything makes me cry, from difficult decisions to TV storylines. And sometimes I cry for no reason at all. After twelve months of feeling incredibly disconnected from my emotions, it’s pretty overwhelming. I’ve described it as similar to turning an old tap: it’s nothing, nothing, nothing and then suddenly, it’s spilling everywhere and I’m emoting all over the place. It feels very extreme and I don’t seem to be able to control it.

But having said that, I am thinking more clearly. Up until very recently, I’ve been struggling to think, to write, to engage at all. I’m not sure I can really explain it: it’s so deeply rooted in feelings rather than words. It’s not really measurable. It’s kind of like trying to run through water: it takes so much energy to achieve so little. And once you get out of the water, moving is so easy and it’s such a relief. I’m so relieved to be able to think again. I don’t feel like I’m back to normal (and I’m still struggling in the songwriting department) but the fact that I can even write this out is a big deal.

One weird consequence of changing medications is that I want to eat all the time. I really hadn’t expected that. When I stopped taking the Venlafaxine, I was eating about one meal a day: I didn’t have much will to eat and the medication made me incredibly nauseous. And now, the urge to eat is there at all times. There have been days where I haven’t been able to concentrate because all I can think about is food. It’s causing me a lot of anxiety: firstly, because it’s a pretty extreme change (and I am NOT good with change) and secondly, because eating doesn’t satisfy the urge. I eat and it’s still there. It’s so frustrating. I’m not quite sure what to do about it.

My depression hasn’t lifted (yet?) but it has definitely shifted and in the reshuffle, my anxiety has come back in full force. I’m anxious all the time. Before, it felt like I was too disconnected from everything to really feel any anxiety but now, it’s almost overwhelming. I feel like I’m constantly running from it, filling my day with distractions to keep it at bay. But then, at night, it takes over. It’s made me anxious about going to bed and there have been more than a few occasions where I’ve accidentally stayed up all night in my attempts to distract myself. The anxieties themselves aren’t new but usually I’d only have to deal with them one at a time whereas now it’s like they’re all present all the time. It’s exhausting and scary and draining.

So it’s neither a miracle nor a disaster. And it’s better than the Venlafaxine. Other than that, I don’t know. I’m feeling very overwhelmed at the moment.

Getting Back To Gigging

Over the last twelve months, I’ve barely been performing at all. I just haven’t been up to it. My depression has been completely overwhelming and has only been compounded by trying to find a new antidepressant, what with all the side effects: at one of the few gigs I have done, I was getting so dizzy that I couldn’t stand up long enough to play three songs. So it’s been a struggle. But in the last few weeks, I’ve had two gigs – and two gigs that I really wanted to do – and so I’ve had to figure out how to do everything that that involves while still struggling the way I am. It was hard work and the heat didn’t help but I managed to do them and do them reasonably well all things considered.

The first performance was part of Brighton Soup. For those of you who haven’t heard of it, it’s a community event where four people (or organisations) pitch their ideas to improve Brighton and Hove. Everyone votes and the pitch with the most votes gets the money from the ticket sales to make their idea a reality. They invited me to play at their next event and it turned out to be such a special experience. I was so moved by all of the pitches and the general spirit in the room.

I was really anxious about performing – more than I have been in a long time – and my hands were actually shaking. I find that very disconcerting, not being in control of my body. I took a deep breath and tried to imagine it flowing through my body, imagine everything settling. That helped a bit, as did trying to really feel every line of each song as I sang it.

Before this unplanned break from performing, I felt fairly confident on stage and although I did get nervous, it all but disappeared the moment I started singing. It took longer this time but, by the time I finished my four songs, I felt like myself again. I’m not sure I could explain the process – from shaking mess to confident performer – but I could feel it happening and that, in itself, helped with my anxiety.

The second performance was at Disability Pride in Brighton. I got to play last year (despite technical difficulties, it’s still one of my favourite performing experiences) and I was SO excited to get to play again. It’s such a special event.

It turned out to be a pretty challenging gig. The acoustic stage was inside an inflatable structure, which needed a generator to remain inflated. The generator was so loud that I couldn’t hear myself at all. I was reassured by multiple people that it sounded great from the audience’s perspective, but I still really struggled with it. Had this happened a year ago when I was performing fairly regularly, it wouldn’t have bothered me as much because the more you perform, the more it gets into your muscle memory. So, if you’re struggling to hear yourself, you can rely on other parts of your body to judge how the performance is going: how your voice feels in your throat, for example. But during this ‘break’ from performing, that muscle memory has faded and so I was relying heavily on hearing myself. So it wasn’t as easy as it could’ve been. Plus it was stiflingly hot and I’ve always struggled with heat.

But having said all of that, it was one of the most supportive and most generous audiences I’ve ever played for and I felt so, so lucky to be there. I wish I could’ve given them a better performance. My sincerest thanks to everyone who made the event possible; I literally can’t put into words (I’ve been staring at the computer screen for an hour) how much it means to me.

The last few weeks have been a bit of a rollercoaster, but one that I’m really grateful for. I’d sort of forgotten how much I love performing but this has really helped to remind me.

 

Hannah Jane Parkinson on Mental Health and Mental Illness

Not long ago, I read an article in the Guardian Magazine and I really wanted to share it with you guys. Hannah Jane Parkinson writes about her experience with mental illness, the conversation around mental health, and how we can make real change happen. She doesn’t pull any punches, which can make it hard to read, but that’s exactly why it needs to be out there because even though we are making progress around mental health, there’s still a long way to go. And that’s what this article is about. I really recommend reading the whole thing (you can find it here) because I just cannot do it justice without posting the entire article.

The whole article is important but here are some of the most important points:

“We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.”

A very important point as it’s so easy to blur the two together.

“Like the rest of the population, I instinctively love the NHS, from the junior doctors to the consultants to the community psychiatric nurses. But, really, if you asked me right now? I hate the NHS. I hate the thin film of skin on its bones. It is incompetent and ailing. I used to blame the system. Mostly it is the system: those never-ending cuts and closures; the bureaucracy; the constant snafus of communication; the government’s contempt for staff.”

This is such an important issue to talk about. I feel exactly the same way. I love the NHS and I’m so grateful that it exists: it has literally saved the lives of several of my friends. I would fight to the death for it. But when it comes to mental health and mental illness, it’s incredibly lacking. I saw so many people who either couldn’t help me because of how the system works or wouldn’t help me because they didn’t understand, or even know of, what I was struggling with. And I know many people who’ve had the same experience. It’s a really upsetting, difficult situation and there’s no simple solution.

“The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.

Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).

What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.”

One of the things that, I think, sets this article apart from others I’ve read is that it includes concrete steps that we can all take. So often, articles talk a whole lot about how we need to create change but then they finish without actually telling us how to do it. I finished reading this article and felt empowered, like I could actually make a difference when, usually, the situation makes you (or, at least, it makes me) feel overwhelmed and hopeless.

These are some of the big points made in the article. But as I said, go and read the whole thing. It’s a really important piece of writing.

It’s taken me a really long time to write this out because the article talks about issues that make me really emotional and because there are so many quotes that I could pull out and talk about. While our experiences of mental illness are very different, there were so many things in this piece that I related to, this one maybe most of all:

So I am a newspaper journalist – for now. But I don’t know how long for because the illness might grip itself around me so tightly that it cuts off everything I love and hold dear, and my ability to lead a normal life.”

Thank you, Hannah Jane Parkinson, for writing such an important, moving piece.