Posted on October 13, 2018
Going to therapy hasn’t always been easy. I feel so, so lucky to have such an amazing therapist now but I had a lot of difficult experiences before I started seeing her. So I thought I’d share some of those experiences. Maybe they’ll be helpful.
After many, many appointments with my GP, I was finally referred to the local NHS Wellbeing service but the session didn’t go well. At this point in time, my anxiety was so bad that I couldn’t talk to people I didn’t know. I just couldn’t. Answers to questions would form in my mind but I couldn’t force them up my throat. So I sat there, in tears, while the doctor tried to get my Mum out of the room and told me he ‘wouldn’t’ help me if I didn’t talk. I don’t want to rant but I WAS STRUGGLING WITH A MENTAL HEALTH PROBLEM. I wanted desperately to be able to talk about it but I couldn’t. I don’t remember much about that appointment but I do remember standing in the street afterwards, shaking and crying and screaming and swearing. I couldn’t understand why no one was helping me when there was so clearly something wrong.
My second attempt at therapy was a bit better. I started Cognitive Behavioural Therapy (CBT) with a really lovely therapist. She was very patient and very open to working around the anxiety that kept me from talking. She was also happy to have my Mum in the room: it helped my anxiety and meant she could provide information. Slowly I started to trust her and started answering questions myself. But it was exhausting, bone achingly exhausting. As hard as we worked, I didn’t feel like we were making any progress and it was too hard to go through that to make no progress. I really liked her and I could tell that she was a really good therapist but the approach wasn’t right for me. I found the format too rigid. In simple terms, CBT is about breaking down your problems and then trying to create change in those areas. I felt, and still do feel, that my problems are too murky for a short stint of CBT. I know now that many of my problems originate from my Autism and the fact that it went undiagnosed for so long but even with that knowledge, the difficult things still feel overwhelmingly huge. I can see CBT being useful for a specific anxiety. For example, we tried to work on my anxiety around making phone calls. But I think the reason it didn’t work is that it wasn’t an isolated problem; it was a piece in a much bigger puzzle. I don’t think you can solve that sort of problem if you don’t know what’s causing it. Plus, being rational about what you’re struggling with in the controlled setting of therapy and being rational when it’s overwhelming you are very different things. CBT sort of assumes that you can still apply the skills you’ve learnt in therapy regardless of how you’re feeling, which can feel impossible, especially if you live with really powerful emotions. But maybe that’s just my perception.
The next thing we tried was Eye Movement Desensitization Reprocessing (EMDR), recommended by a family member. In the few months between finishing CBT and starting EMDR, my anxiety had sky rocketed so starting a new therapy was really hard. It was so bad that I actually never spoke to the guy I worked with. But despite that, and my difficulty with eye contact, communicating with him was easier than it had been with previous therapists. He was fantastic. He accepted my difficulty speaking and suggested writing on a whiteboard. I considered that and it felt possible so that’s what we did. He asked me questions and I replied, scribbling as fast as I could. It worked. And to take the pressure off, we would spend part of the session on the floor, playing dominoes while he asked me questions. I felt absolutely safe there. It was incredibly strengthening to have someone accept my anxieties as they were, to have someone recognise that I wasn’t just being difficult, that I was genuinely struggling with something really hard. And although it didn’t turn out to be the right thing for me, the sessions are still really important to me. For several months, we worked hard. We tried. I felt supported. And even though I didn’t ever speak, I did once sing for him and he almost cried. That was a pretty big moment.
After that, I didn’t go to therapy for a while. There was a lot of life stuff going on and there just wasn’t the time to find someone new. But I did start seeing a new psychiatrist. He prescribed me Phenelzine (which I’ve previously written about) and we spent a lot of time trying to figure out what was causing my problems. I guess it was a type of therapy. We went through my history and analysed my emotions, trying to find a diagnosis. The medication helped and we managed the side effects but it still took a long time. When my university said that they couldn’t help unless I had a diagnosis, I pushed for this and in January 2015, I could finally put names to the issues I was struggling with (apart from the Autism diagnosis which came several months later). My psychiatrist recommended Dialectical Behaviour Therapy (DBT) so we started looking for another therapist.
My current therapist is the first one we met. I just knew she was right; me and Mum walked out, looked at each other, and said, ‘she’s the one.’ We did meet another one but my mind was made up. And we were right. She’s amazing. I’ve been seeing her for three years now and I’m so grateful to have that safe place. DBT suits me much better. It’s based on CBT but, as the Mind website says, it’s “been adapted to help people who experience emotions very intensely.” They both help with changing unhelpful thoughts and behaviours, but DBT also helps you to accept yourself. It’s about a balance between acceptance and change. That really makes sense to me and always has.
In the beginning, I needed my Mum in the room with me and she would answer all the questions. We’d always talked about everything so she knew pretty much all the answers. But over time, I felt more comfortable there. I needed Mum there less and less and eventually I started doing the whole session by myself. Three years later and it’s really, really important to me. It’s a huge part of who I am. It’s not easy; it’s really hard work and I often come home exhausted, sometimes falling asleep on the sofa afterwards. But it’s really satisfying to talk things through, to make connections, to see change happen. I’ve talked about things that I never, ever thought I would talk about and I’ve worked through things I never thought I’d let go of. That’s so huge that I can’t really comprehend it.
So that’s my therapy journey. For me, it’s DBT that works but I’ve seen the others help people too. You need to be ready, you need to find the right approach, and you need to find the right person. It’s not easy but it is worth it.
Category: animals, anxiety, autism, bpd, depression, diagnosis, emotions, medication, mental health, ocd, therapy, treatment, uncategorized Tagged: actuallyautistic, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, cbt, cognitive behavioural therapy, dbt, dialectical behaviour therapy, emdr, experience, eye movement desensitisation reprocessing, medication, mental health, mental health awareness, mental health treatment, mental illness, mental wellness, nhs, phenelzine, therapist, therapy, therapy experience, therapy journey, treatment
Posted on October 10, 2018
(Trigger warning for self harm.)
Today is World Mental Health Day.
If I’m honest, I’m not really sure what to say. I’m in the middle of the worst depression I’ve ever experienced and I’m very aware that my perspective, my opinions, my hopes are distorted by that. If this was a video, I might just sit and cry. But this day is important so I’m trying to pull myself together and put something out into the world that is (hopefully) positive (and maybe helpful).
This year’s theme is the mental health of young people. When it comes to things like this, I’ve never felt comfortable talking about anyone’s experience but my own. So that’s what I’m going to do. I hope that’s okay with you guys.
My experience at secondary school was a very mixed one. I spent the first three years dealing with some complicated health problems but by the time I reached Years 10 and 11 (ages fifteen and sixteen for those of you who don’t know the education system in England), I felt really settled. I loved learning, particularly English, Maths, History, Psychology, and Philosophy (real shout out to my teachers in all of those subjects). I got real satisfaction from working hard and that was reflected in my grades. I came out of secondary school with not unimpressive grades, especially when you consider I missed most of the first three years. So I felt pretty good about going into Sixth Form (A Levels/ages seventeen and eighteen).
But that was when it all started to unravel. I really, really struggled. I’d gone from completing the work with ease to barely scraping by. I couldn’t understand it: I was trying so hard and it didn’t seem to make any difference. And I couldn’t see it at the time, but my anxiety was getting worse and worse and what I now know to be depression was creeping in. But I didn’t know it was happening so I just kept pushing forwards. I spoke to a couple of people about the high anxiety I was experiencing but each one told me that anxiety is normal and that was the end of the conversation.
It all came to a head when I failed an exam, something that had never happened before. I’d been told I was all set for an A* and I came out with a U. I was absolutely devastated. I know now that our worth as human beings has nothing to do with grades but I was eighteen years old: I had only ever been valued based on my grades. It’s no one person’s fault but that’s how the education system in this country works. It needs changing.
But back to this little story. I don’t remember much after I opened the envelope and saw that U but I ended up in one of the less used college toilets, self harming repeatedly with a broken paperclip. I don’t know how long I was there (long enough that the automatic lights went off and I was plunged into a very appropriate darkness) but at some point, my friends tracked me down and coaxed me out of the stall. I still remember seeing my reflection: my make up all down my face, my hands shaking, and the scratches barely hidden by my long sleeves. One friend took me to a nearby café, bought me a hot chocolate, and just talked to me. And eventually I told her what I’d done. Her kindness and gentleness was so healing, not for the whole problem but for that very difficult day. I will never forget it and I don’t think I’ll ever be able to repay it.
After that, I dropped out of that course and clawed my way out with two A Levels and an Extended Project, far less than I and everyone had expected of me. I went straight into a music course but had to drop out two days in because my anxiety was so bad that I just couldn’t cope. I spent a year grappling with the anxiety and depression, trying the first of many antidepressants (so many) and trying to retake some of the exams in the hope that I could improve my A Levels (I didn’t end up opening the results of those until after I finished my degree, three years later, but that’s another story). During that year, I tried desperately to get help from the NHS to no avail: my anxiety was so bad that talking to people I didn’t know was practically impossible and they refused to help me if I wouldn’t talk. Eventually we were forced to go private, something that I’m endlessly, endlessly grateful has been possible. And I only managed to get my diagnoses when my university said they weren’t able to help me if I didn’t have an official diagnosis.
It still upsets me to talk about. I asked and asked and asked for help but no one either seemed able or willing to help me. I would not be as twisted up now had that not been the case. The information and support was not available to me, it wasn’t available to my family, and it wasn’t available or deemed important enough (I’m not sure which is worse) to the medical professionals I saw. That has to change. It is not acceptable.
Now that I’ve told my story, I want to include some other important, relevant stuff.
The first thing is that I want to link you to Hannah Jane Parkinson’s recent article in The Guardian. She makes the very important distinction between mental health and mental illness. And this is where, I think, physical health and mental health are most comparable: your mental health is something you take care of (or don’t) everyday, by eating and sleeping well, exercising, talking through your emotions, and so on. Mental illnesses, similarly to physical illnesses, can be caused by not taking care of your mental health but there can also be genetic factors, environmental factors, and just hard stuff going on in your life.
WAYS TO HELP YOUR MENTAL HEALTH:
WAYS TO HELP YOUR MENTAL ILLNESS:
And of course, there is overlap between these two lists.
Where we go from here, I’m not sure. The information about mental health and mental illness is spreading and spreading and more and more people are speaking up. Now we need the right systems to support it: doctors, treatment, government officials who advocate for positive change. For now, that’s all I know. For now, I’m just trying to manage one day at a time.
(And a gentle reminder, my debut single, ‘Invisible,’ which I wrote about my experiences with my mental health is available on iTunes and Spotify and all those places and all proceeds go to Young Minds, a charity that supports young people in their mental health.)
Category: about me, anxiety, depression, diagnosis, emotions, medication, mental health, response, school, self harm, tips, treatment, university Tagged: advice, anxiety, depressed, depression, family, friends, health, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health in the media, mental illness, mental illness awareness, mental wellness, school, secondary school, self harm, sixth form, sixth form college, tips, wmhd, wmhd18, wmhd2018, world mental health day, world mental health day 18, world mental health day 2018
Posted on October 6, 2018
A few years ago, I found this post on Tumblr about celebrating ‘grown up birthdays.’ This person talked about how stressful they found birthdays as an adult and so they’d implemented two rules: do something you wouldn’t normally do and buy yourself something you wouldn’t normally buy. They said that, since starting these rules, each year has been distinct and memorable.
I really like this as an idea. I can definitely relate to feeling anxious around birthdays: I always feel like I’m not enjoying myself as much as I should be, like I’m not happy enough. It’s silly but it gets me all twisted up. And when I was in school and university, my birthday always felt rushed, what with the start of the academic year.
More recently, as I’ve been struggling more with my mental health, I find myself thinking something like, “This is the year I’m going to feel better,” or “I’m going to feel better by my next birthday.” It causes me such anxiety. And the longer this period of depression goes on, the more anxious I get. I’m aware that it’s not a helpful thought to have but it’s not an easy one to unpick. But maybe a possible answer is to associate my birthday with positive memories.
So here we go…
Rule #1: Do something you wouldn’t normally do.
I had a couple of thoughts about this one but then one just fell into my lap and just seemed perfect.
My dog has had hydrotherapy for years. He’s fifteen and very arthritic and it’s helped massively. Plus it’s probably the most adorable thing I’ve ever seen. He used to surge through the water after tennis balls, kicking so hard that the hydrotherapist had trouble figuring out which joints were working and which weren’t. But now it’s much calmer. He knows the ball will be there when he gets there. Anyway.
Usually he works with a hydrotherapist but this time, the hydrotherapist taught my Mum and me how to do it. And oh my god, it was hard work. They make it look so easy! Trying to gauge how much he’s extending and the angle his legs are at when fully extended was really tricky but as an experience, it was so much fun. I was exhausted afterwards but I really, really enjoyed it and it was a special experience.
Rule #2: Buy yourself something you wouldn’t normally buy.
I get very anxious about spending money (this post is turning into a list of things I get anxious about…) so carrying out this rule was probably a good exercise in challenging that anxiety. Anyway.
For as long as I can remember I’ve loved typewriters. I like how they look, I like how they sound, and I love the tangible quality that they attach to stories and poetry and words. I’ve been fostering one – if that makes sense – for the last couple of years and I love it dearly but there’s always been one I’ve had my heart set on. It’s the most beautiful typewriter I’ve ever seen and then a couple of weeks ago, I saw one for sale on Etsy. I’ve had these rules in mind for a while and given how rarely it happens to see this exact typewriter for sale, I went for it.
It’s so beautiful and it does actually still work. I haven’t had time to try it out yet but I’m really excited to.
Despite my current mental health struggles, it was a good birthday. It was quiet and low key but with some really positive experiences. It was a good day.
Category: about me, animals, anxiety, event Tagged: 24th birthday, adulthood, anxiety, birthday, birthday rules, canine hydrotherapy, depression, dog, growing up, hydrotherapy, mental health, mental health blog, mental health blogger, mental health blogging, mental illness, tumblr, tumblr post
Posted on October 1, 2018
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…
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:
View this post on Instagram
This is Eldon Square shopping centre in Newcastle. In 1999, while I was still trying to claw back from a breakdown, I cried in this shopping centre. Panic and despair had swarmed me and the brace face I had tried to keep for Andrea that day had slipped. People could see me crying. A 24 year old strong young man, crying in a shopping centre. I was convinced I'd never get better. Never make it to 25. Well, I am now 42 and I just did an event at a packed out Waterstones across the road from here. I am the future I never believed in. A fiction that couldn't happen. And yet I did. It is amazing what can happen simply by living.
A post shared by Matt Haig (@mattzhaig) on
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.
View this post on Instagram
A post shared by J U N I P E R & F I G (@juniperfoxx) on
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:
View this post on Instagram
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.
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…
Category: favourites, mental health, response, video Tagged: anna akana, art, behind the scars, borderline personality disorder, bpd, claire wineland, claudia boleyn, dudebabe, eating disorder, hair pulling, haley pham, instagram, juniper the fox, laura greenway, lauren kaech, lucy moon, matt haig, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health in the media, mental illness, mental wellness, petroom, rebecca brown, self care, social media, sophie mayanne, trichjournal, trichotillomania, trichotillomania awareness, vlogger, youtube, youtuber
Posted on September 1, 2018
Since I last posted on here, literally all I’ve done is survive.
After putting up last week’s post, I went to therapy, which just about wrecked me. It was really hard going. I don’t want to get too into what we talked about and what I’m currently struggling with because I’m really struggling with it and I’m still figuring out how to put all of it into words. But I think the gist of it is important to include: I’m struggling with ‘feeling’ autistic, like I’m never going to be able to function the same way as everyone else. I don’t know how to cope with a thought like that. And that has really triggered my depression, in a massive way. I feel like I say this every time, but it feels like the worst place I’ve ever been; but maybe I say it every time because each time takes more out of me.
It looks so small and simple when I write it out like that. But in reality it’s powerful enough to overwhelm everything.
I left therapy feeling absolutely drained. I didn’t know how I was going to get through the day, get through the week to the next session. But somehow I did, one minute at a time. This week has been about survival because sometimes that’s all you can manage – I feel like I’m standing on the very edge of the black hole that is my depression and it’s taking all of my focus to not get pulled in. So while I feel like I’ve achieved nothing, I’ve actually achieved everything. At least that’s what I’m trying to tell myself.
So I thought I’d write down what I do when I’m in this place, where the only thing I can do is survive:
Each day, I get up at seven and go to the gym to swim for thirty minutes. I always want to do more but through trial and error (usually error), I’ve found that this is the amount I can do and still kind of function. If I push on, I end up falling asleep during the day and screwing up my sleeping pattern or I end up in a place where everything makes me cry. So I’m trying to be sensible and build it up slowly.
I get home and head for the living room. I curl up on the sofa, turn on the TV and continue the rewatch of whatever TV show I’m watching (currently The Mentalist). I’m not really watching; it’s more about having familiar, comforting background noise so that the scary thoughts can’t get in. Then I find something that will distract me from all the overwhelmingly difficult things. The activities that work best for me are playing piano and printing, cutting, and sticking pictures from Tumblr into notebooks. And sometimes reading a book works, if I have the concentration to actually read.
And I use those things to get me through the day. I spend time with the animals in my house. I’m lucky enough to have a Mum who works from home so that I can have someone with me when I need to have someone with me. I try to eat well.
And then I go to bed not too late and start all over again.
It’s a hard thing to get my head around and I’m aware that I’m very hard on myself. Because even though I genuinely believe that sometimes all you can do is survive, I find myself getting desperately upset that I’m ‘not doing anything.’ I feel like I’m not trying hard enough – in my mental health, in my music, in my life – and that I should ‘push through it.’ And it’s so hard to think that when I feel so overwhelmed by my depression.
And, outside all of that stuff, someone I care about is in hospital and no one really knows what the outcome is going to be. So I’m trying to manage all the anxiety around that too but it’s like trying to stand on ground that’s constantly shifting.
I think that, if I keep writing, I’m going to end up going in circles: ‘it’s okay to focus on surviving’ to ‘I should be trying harder’ and back to ‘it’s okay to focus on surviving’ and round and round and round. So I’m going to stop here. But regardless of all my anxieties and negative thoughts, I know that it’s okay to focus on surviving. And I hope you know that too.
Category: anxiety, depression, emotions, identity, mental health, therapy, tips Tagged: actuallydepressed, advice, anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, depressed, depression, mental health, mental health blog, mental health blogger, mental health blogging, mental illness, survival, surviving, tips
Posted on August 25, 2018
I’m struggling. And I’m struggling to write this post.
Medication wise, I’m taking Amitriptyline for my depression and Pregaballin for my anxiety. The Amitriptyline has definitely helped with the physical symptoms of my depression: my concentration is better, I can think more clearly, and my appetite has returned. But as the depression pulled back, my anxiety returned in full force. It was so bad that I had to have something playing – music, audiobook, TV show – and playing loud so that I couldn’t think and therefore the anxiety couldn’t take hold, if that makes sense. I started to hate the evenings and going to bed because as the busy-ness that filled the day faded, my anxiety got stronger and stronger. Hence the Pregaballin. I’ve tolerated these medications pretty well. The thing I’ve noticed most is that I constantly have a dry mouth so I’m drinking ridiculous amounts of water every day. But that was something I needed to improve anyway and I’ve had far worse side effects.
For a while, everything was pretty good. I had some really good days, the kind I haven’t had for a really long time. That was really special. But the anxiety and depression – the depression especially – have crept back in and it’s a struggle to even get out of bed. I was starting to think that Amitriptyline might be the right medication but now I’m not sure. I can summon enough energy for the odd social interaction or professional opportunity but I’m really, really struggling with my energy. It doesn’t help that all day, every day something inside of me is screaming at me to crawl under my duvet and sleep for the rest of my life. I feel invisible and useless and miserable. Just living feels overwhelming.
My perception of time has completely flipped. Up until recently, time felt like it was moving really quickly, like I’d sit down to write a blog post and the whole day would be gone even though I’d barely written more than a few sentences. Everything seemed to take so much time. But now a day seems to last a week. When I’m having a good day, that’s great; I can achieve so much. But on a bad day – and I’m having quite a few of those – it’s overwhelming: I have to actively survive that long. So much happens, so many emotional ups and downs. It’s exhausting.
I don’t know what to do. But I’m in regular contact with my psychiatrist and my therapist; I’m trying to stick to my routine (swimming first thing in the morning, scheduled time for music practice, and so on); I’m talking it all through with my Mum. I guess I’m just muddling through.
Category: depression, emotions, medication, mental health Tagged: amitriptyline, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, depressed, depression, medication, medication review, mental health, mental health blog, mental health blogger, mental health blogging, mental illness, pregaballin
Posted on August 18, 2018
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.)
Category: anxiety, bpd, depression, diagnosis, mental health, ocd, therapy, university Tagged: actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, borderline personality disorder, bpd, depression, diagnosed as an adult, diagnosis, medication, mental health, mental health awareness, mental illness, mental illness awareness, mental wellness, obsessive compulsive disorder, ocd, paroxetine, phenelzine, sertraline, social anxiety, social anxiety disorder
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.