Posted on June 8, 2019
The last few months have been particularly difficult, anxiety and depression wise. I came of my anti depressants and one of my anti anxiety medications with the intention of starting a new medication but starting that new medication has been a real struggle. This new low brought on by the withdrawal and the lack of meds has been possibly the worst I’ve ever felt. I’m aware that it’s affecting my thinking and my decision making but right now, the starting of a new medication just feels impossible. Just the thought of it triggers an autistic meltdown. So it’s safe to say I’m struggling.
BUT the last week has been better for exactly one reason: I got to see Maren Morris in concert! In fact, I got to see her twice! So that’s what I want to write about: seeing her and how concerts are something that can really help me when I’m feeling very low. There’s something about the energy that just lifts me, makes my body feel lighter and that’s so very valuable when I’m in this place.
My first show of the tour was Bristol. As I’ve mentioned in previous posts, if possible, I like to go to multiple shows of a tour because I get overwhelmed so easily. Seeing the show more than once allows me to really experience and enjoy all of it. Concerts are pretty much the only thing I spend money on so I’ve been very fortunate in this endeavour.
The show was incredible. I’d been feeling very, very depressed in the days leading up to the show and didn’t even want to go – it felt like it was wrong to want such a simple ‘fix’ to my low mood and like seeing such an amazing songwriter would hurt too much given that I haven’t been able to write a song in months (if not longer) – but as soon as Maren Morris took the stage, I started to feel lighter. It felt easier to breathe. She’s an incredible songwriter and performer and her voice is out of this world: I remember once describing it as sounding like a gorgeous sunset. Hearing the new songs was like hearing them for the first time and hearing the old ones was like a wave of nostalgia: they remind me of my degree, of my first trip to Nashville, of writing songs in my best friend’s living room, of a younger, less troubled version of myself.
The song that really got me was ‘A Song For Everything.’ This is what I wrote in my diary after the show:
“Given how emotional and tearful I was, I was crying by the first chorus. It just lifts my soul and makes me feel lighter, like I’m going to be okay, like I need to dedicate my life to writing a song like that and so I have to be alive to do it. I was breathless by the time the song finished.”
“I don’t often cry at concerts (it usually happens when I hear the songs again for the first time after the show) but this one just got me. My depression is the worst it’s ever been but tonight… helped. I could write a book about the emotions of the last few days but I’m so tired that even this is a struggle. @marenmorris, thank you for being there exactly when I needed you to be. Thank you for reminding me that there’s a song for everything and that maybe one of them could be written by me, but that I need to be here to write it. #girltheworldtour“
I had a day to recover before my next show, in London. At the freaking Royal Albert Hall. This is probably my favourite venue I’ve ever been to and it’s my ultimate dream to sing there one day. One can hope. And work hard. Anyway.
The day of the show, I cried all day. I was miserable, deeply, deeply miserable. I was on the edge of a meltdown all day but somehow I was holding it back because I knew if I had a meltdown, I wouldn’t be able to go to the show. Me and Richard (my best friend and writing partner) had bought the VIP packages, which meant we would get to meet Maren before the show and I couldn’t miss that. But even though I was looking forward to it, I was paralysed with anxiety. I didn’t know what to say or do and the fear of wasting the opportunity was so great that I couldn’t think. I couldn’t think my way through the problem and that was almost the worst part.
I cried all the way to London (listening to ‘A Song For Everything’ on repeat) and I only really managed to get myself together when I arrived at Victoria station. Holding onto that song helped somehow. I got to the Royal Albert Hall, met Richard, and we (all the VIP package holders) were all taken in for the pre-show Q&A and meet and greet. It went okay. I’m not gonna lie, I was actually shaking. It wasn’t specifically because I was anxious about meeting her – I’d met her on the previous tour and she’s absolutely lovely – it was more that I was worried about it going wrong, that I’d waste the experience by saying something embarrassing or meaningless. Looking back at it now, it went okay. It could’ve been worse, it could’ve been better. Maren was very sweet but I didn’t feel able to be as honest as I would’ve liked to be, for multiple reasons.
When the doors opened, we went to find our seats and discovered that we were FRONT AND CENTRE. At the Royal Albert Hall. For Maren Morris. I think that was when I first started to feel more excited than anything else – anxious, depressed, lost (“The depression was receding – just out of reach – and it felt easier to smile, even if it was a little slow and stiff.”). And all of that completely fell away when the show started.
It was one of the best shows I’ve ever been to. Maren is one of the best performers I’ve ever seen, her vocals are unmatched, and I love her songwriting more than I can properly express. The upbeat songs were so much fun and the slower songs were quiet moments filled with emotion. It might sound like any other concert (any good concert) but the energy was bigger and bolder and brighter than any other concert I’ve been to. I lost my voice long before the show was over but that didn’t stop me from singing along. And as I said in my diary, “I’m always self conscious dancing but sometimes, if all the stars align, the constant tension in my body releases and I can just move as my mood dictates. It’s not very elegant but it is fun.” She even had special surprises planned: performing ‘Seeing Blind’ with Niall Horan and bringing a string quartet (an all female string quartet!) on stage for several songs. The whole thing was magical. I never wanted it to end. But unfortunately it had to, although she closed the show with style: an amazing performance of ‘The Middle.’ Me and Richard have spent so many car journeys and writing sessions and just hours of our lives singing that song; singing it with Maren Morris from the front row of the Royal Albert Hall may be one of my favourite memories of all time.
Another snippet from my diary: “The performance was incredible and hearing everyone sing along just made my heart soar. It was all gone and I felt alive and light and happy. I was tired and achy but it was amazing.”
Getting home was hard. I had a huge adrenaline crash and all the negative emotions returned and that, combined with several unpleasant incidents on the train, had me in tears before I was even halfway home. I also struggle physically after concerts: my whole body hurts and that was starting to set in so yeah, getting home was a struggle. But I made it and my Mum was kind enough to prepare macaroni and cheese and ice cream (not together), which did help a bit. My brain wasn’t really ready to go to bed but a migraine was setting in (another side effect of concerts) so I didn’t have a choice.
“Yesterday was a very difficult day. The depression was bad; I shook, I screamed, I cried (probably seven or eight times). It was miserable. But in the evening, I got to see @marenmorris at the @royalalberthall and my god, it was like it was built for her voice. What a special artist in such a special venue. Somehow, me and @richardmarcmusic ended up with front and centre seats and the whole show was just incredible. Every second was fun, every second was amazing. I wish it could’ve gone on forever. The tears returned on the train and I cried most of the way home but I am so, so grateful to have been there, so, so grateful to have had that escape for a few hours. I will treasure those memories.”
Recovering from these concerts has been an experience. Over a week later and my back is still bothering me. But it’s an improvement: the day after the London show, I could barely walk and it took days for the limping to fade. But I’m doing better. Surprisingly, the post concert low hasn’t been too bad. Mainly, I just miss being at the show, in the show. I physically miss it. My body misses it. But I’m doing okay. These concerts have given me a lift I desperately needed and will keep me going while I take my next steps, whatever they end up being. For that, I’m incredibly grateful.
Category: anxiety, depression, emotions, mental health, music, video Tagged: anti anxiety, anti depressants, antianxiety, antidepressants, anxiety, asd, autism, autism spectrum disorder, autistic meltdown, concert, country music, depression, girl the world tour, maren morris, medication, medication withdrawal, meltdown, mental health, mental illness
Posted on April 16, 2019
Today is exactly a year since we moved house. That was a terrible day. It was stressful and upsetting and exhausting. I had a meltdown when we finally collapsed in the new house (surrounded by boxes and carefully balanced furniture) and neither me nor my Mum slept that night. It was all just too much.
It’s better now. I’m still adjusting, but then I had spent most of my life in that house so I didn’t expect a quick recovery. I’m getting there. My room almost feels like my room.
Since we moved out, we’ve actually learned quite a bit about the history of the house and the people who lived there. Our favourites are two women who lived and worked together their whole lives, the first head and deputy head of Varndean School. We even found pictures of them, which is really cool. We were all weirdly moved to learn these stories.
When we moved out, I wasn’t thinking about the history of the house and our part in it. I was just trying to figure out a way to say goodbye. So I wrote a letter and tucked it under the loose floorboard in my room. It was a letter to any and all future occupants, asking them to look after the house for us, for me. We’re part of the house’s history now and perhaps, one day, someone will find this letter and feel the same way about us as we feel about these two women. And since we live in a technological age and the first step of investigation is to google something, I thought I’d put this out into the internet. Maybe one day they’ll find me.
To whoever finds this,
This has been my bedroom, on and off, for about seventeen years. That’s most of my life. That’s a surreal thought, one that I’m trying not to obsess over. It took a long time to feel okay about moving and I’m scared that thinking too hard about all of it will be the wind that blows me back into that storm. I didn’t think I’d survive it the first time. I don’t want to leave but I don’t want leaving to be a life altering tragedy. I’m trying to remember that I don’t need this room to be me, even if it feels like that sometimes.
A lot has happened in this room, in this house. I grew up here, watched thunderstorms, brought friends over for dinner, celebrated birthdays and Christmases. I wrote stories and songs and my brother learned lines and turned the flickers of ideas into masterpieces. I said a last goodbye to my cat of fifteen years, learned that I could love another one, and then raised two litters of kittens with her. I taught my dog to sit, sneaked him onto the sofa when no one was home, and sang to him while emptying the dishwasher. I studied for GCSEs, A Levels, and my degree. I graduated with a first and I found out in this room. I had my heart broken. I struggled with my health and my mental health. I found out that my Dad had died.
I worry that leaving this room, this house, means leaving all of those things behind and that I’ll lose myself because of that. It may not be rational but it’s how I feel. I hope that I’ve managed to box all of that up with my belongings but I guess I’ll see when I get to the new house. There’s a little voice in my head that says that the rooms feel empty because we’ve packed all the memories and emotions but I’m scared to believe it.
Maybe this is all too flowery and fluffy for you. That’s fine. A room can be just a room. A house can be just a house. But regardless of whether you see it as four walls or a time capsule, please take care of it for me. For us. We have loved it dearly and hope that you will do the same. Fill it with life (and extra radiators because, as you’ll soon find out, it’s practically impossible to keep it warm). I hope you will feel as safe here as I have.
Look after this place. I’m trusting that you will.
Category: about me, event, mental health Tagged: anniversary, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, brighton, brighton and hove, brighton history, childhood home, emotions, england, feelings, goodbye letter, history, home, house, letter, letter writing, letting go, life changing, life event, meltdown, meltdowns, moving forward, moving house, moving on, sussex
Posted on January 1, 2019
HAPPY NEW YEAR!! I hope you have all had a lovely, relaxing holiday period and that you feel hopeful about the year ahead. I’m feeling lighter than I have in a long time and for the first time in months, I’m actually excited about what’s coming next.
But, before we move on to the new year and all the new plans, I want to pause for a moment. This time last year, I set several resolutions – more like goals – for 2018. Now, 365 days later, I want to look back at them and look at how I did, whether I achieved them or not…
WRITE MORE SONGS – Technically, yes. I did write more songs. Not as many as I would’ve liked but more songs nonetheless. As I mentioned in my review of 2018, my depression seemed to completely suppress my creative brain so writing anything was a really struggle. But I’m cautiously optimistic about my songwriting in the near future.
RELEASE MUSIC – Yes, as I said in my halfway-through-the-year post, I have music out in the world (you can listen to my first single, ‘Invisible,’ here). It was a long, hard journey to that first milestone but we made it and I’m excited about what’s coming next.
FIND THE RIGHT MEDICATION – I found many wrong ones but, fingers crossed, I’m onto a good one. Right now, we just have to wait and see (my least favourite sentence in the world).
WORK ON BEING HEALTHIER – I feel really good about this one. Since August, I’ve been going to the gym and swimming for at least half an hour most days of the week and I’ve kept it up for six months. I’m so proud of myself and I love it so much. It helps me make sense of the world and it makes me feel really good. Food is still a daily struggle but I’m not restricting and I’m also not eating everything in sight. So that’s something.
BECOME MORE INDEPENDENT – I feel like I’m going backwards with this one. My depression has been all consuming and just as it started to let up, anxiety rushed in to fill the void. So I’m struggling here. I don’t know what else to say about this one.
READ MORE BOOKS – Yes! I definitely did that! My small, achievable goal was five books and I managed to read ten! So I’m very proud of my efforts in this department. Hopefully I can keep this up going forward.
IMPROVE MY MUSICAL SKILLS – This is another casualty of my depression. My lack of concentration and motivation has just made it impossible to do any consistent practice. Even when I tried my hardest, I couldn’t do it and then I’m really good at beating myself up over it. That’s another thing I need to work on. But as I’ve already said, I’m cautiously optimistic about things moving forward.
GO THROUGH MY POSSESSIONS – Well, I did that. We moved house and so I went through everything as I packed it. That was very overwhelming so I’m sure I missed stuff. I’m still creating a new order and finding things that I can throw out or give away but I made a huge dent in this resolution and I’m pleased with my effort.
So I guess it is now time to make some new resolutions. Watch this space…
Category: depression, emotions, event, holidays, medication, mental health, music Tagged: 2019, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, anxiety, asd, autism, autistic, autistic adult, autistic spectrum disorder, debut single, depression, first single, guitar, happy new year, medication, mental health, mental illness, moving house, new year, new years resolution, new years resolutions, piano, reading, singer, singersongwriter, single, songwriting
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
2. We have emotions.
3. Social interactions can be challenging.
4. Diagnoses can happen at any age.
5. The nuances of dating can be challenging… but we do have sex lives.
6. We have lots of different interests.
7. Bullying sucks.
8. It’s getting better.
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
Posted on December 1, 2018
I’m not quite sure how to describe the last few weeks. Intense, maybe. There’s been a lot going on and I’ve done things and felt things that I’ve wanted to write about but couldn’t figure out how. So I’m writing this, with the good, the bad, and the weird of the last few weeks.
So first, I got to take part in a research study for the Centre for Research in Autism and Education at University College London. I’ve written about my experience with research studies before (here) so I won’t ramble on but I love doing them. It often feels like Autism takes opportunities away from me but this allows me to do something I’d never expected and that’s really exciting. I got to put the EEG cap back on and have my brain waves monitored while I did some computer tasks. It was investigating perceptual capacity in Autism (which I’ve written more about here) and it was really fun, like a Windows computer game from the nineties. And apart from trying to get the saline gel out of my hair, it was a really great experience.
I also went and gave blood for the first time. That was very exciting! I’ve wanted to give blood for years but up until now I haven’t been well enough or I was on medication that disqualified me. So getting to do it was really exciting and a really cool experience. Everyone was really lovely and I’ve since had a text telling me where my donated blood has gone. So the whole thing was really special and I will definitely do it again.
Despite these cool and inspiring experiences, my mental health has been pretty bad: I reached a new low with my depression. I feel like I’m always saying that the current period of depression is the worst it’s ever been but for me, there are real differences: new thought patterns, new emotional states, new lines, new fears. Each period of depression has a different colour. Anyway. It’s been really bad and really hard and I’ve had some desperate moments.
Medication wise, it’s been a rollercoaster. As per usual. I got myself all but off the Amitriptyline a while ago but I just wasn’t ready to try another medication straight away. It’s a tough process and I just needed some time to feel steady, even if that was steadily bad. Maybe not the most logical decision I’ve made but it made sense to me at the time. And ultimately it doesn’t matter now. I’ve started the Clomipramine, which is what everyone wanted me to do. Finding the right medication and the right dosage can be pretty gruelling and I just needed to be in the right mental headspace. I’m not sure how I feel about the Clomipramine but it’s still early days.
And on this last Monday, I went to see Maren Morris play an amazing, intimate show at OMEARA in London. The staff were great about making it accessible and I was let in without having to queue and there was a chair reserved for me – I really, really miss the days where I could stand for hours without a problem. And the show was fantastic. Maren is one of my all time favourite artists/songwriters and it was one of the best shows I’ve ever been to.
“When this wonderful world gets heavy and I need to find my escape… yeah, I guess that’s my church.” // @marenmorris was a complete dream tonight. Beautiful, beautiful songs, singing, and stories. My little songwriter soul is so happy. (x)
It might be blurry but I love this photo of me and @richardmarcmusic after the @marenmorris show tonight. We had SUCH a good time. We’re constantly listening to her music, whether we’re in a songwriting session or just chilling out and playing Mariokart. So we were two happy beans tonight. (x)
And now it’s December. Most of my family have birthdays in December and January and of course there’s Christmas and New Year. So that’s a lot of fun things but it also means a lot of high emotion and stress. It’s a tricky time. I’ve found Christmas difficult for the last few years so I’m going to have to be careful to manage my physical and mental health throughout this period. I’m going back to the post I wrote last year about managing Christmas with anxiety and Autism – if that sounds like it might be helpful, you can find it here.
Category: depression, event, medication, mental health, music Tagged: amitriptyline, anti depressants, antidepressants, anxiety, asd, autism, autism research, autism spectrum disorder, autistic, autistic adult, blood donation, brain waves, centre for research in autism and education, christmas, clomipramine, concert, country music, crae, depression, eeg, giving blood, live music, maren morris, medication, mental health, mental illness, research study, ucl
Posted on October 20, 2018
I’ve never really written about meltdowns before. Not long after I started writing this blog, I started taking Venlafaxine for my depression, which essentially numbed me to all my emotions. And since my meltdowns have always come from an emotional place, I basically stopped having meltdowns. But I couldn’t deal with not being able to feel anything: everything I do – writing, songwriting, relationships, choices – everything I do is based on emotion. So I came off that medication and my emotions (and my ability to think clearly) came back. But I hadn’t had any meltdowns until recently.
A couple of weeks ago, I was supposed to be going to see Halsey in London, something I’ve been looking forward to for years. Since I saw her in 2016. I love her songs – a masterclass in lyric writing, melody, production, songwriting in general – and she’s an incredible performer, one of the best I’ve ever seen. I particularly love the Badlands album: somehow the songs just make me feel brave. So I was really, really excited.
If you’ve been keeping up with my blog, you’ll know that my depression has been particularly suffocating recently and when it’s that bad, being out and around people is incredibly difficult. Sometimes talking about those emotions and the strength of them is helpful: just letting it out of my body lessens the pressure and makes it easier to cope but sometimes, like this time, it’s like a crack in the dam. It just started pouring out and I couldn’t reign it back in. I was desperate to get to this show though so I kept trying.
My Mum drove me to the station but when we got there, I couldn’t get out of the car. It was like a magnetic force preventing me from getting out of my seat, from making decisions. My Mum suggested alternative ways of doing the day but I could feel all the possible decisions and deviations spiralling away from me and I ended up shouting that I needed her to stop (all that anxiety and stress and emotion just exploded out of me). I just couldn’t. I couldn’t find the right decision but I knew when they were wrong. So my Mum said she was going to drive me to London and take me to the show. That’s the only way I was going to be able to go. So that’s what we did.
This is one kind of meltdown. There seem to be different variations of them based on the situation. Usually, I can’t do anything after having one; usually I just have to go and sleep until I feel like myself again. But my desperation to go to the show pulled me through all of that somehow. It took me over an hour to be able to think clearly and make sentences again and by the time we got to the show, I was just about functional – I could walk, I could interact with others (although I still couldn’t make eye contact with anyone) – although I felt like I was in a different dimension to everyone else: we could see each other and interact but it was like we were on different frequencies. I’m mixing my metaphors I know. Meltdowns mess with your head.
It was an amazing show. Halsey shows are unlike any other shows in my experience. She gives everything to her performance. The energy is just off the charts, her vocals were incredible, and the stage/backdrops are complete works of art. The songs I loved before, I loved even more. The songs I liked before, I loved by the end of the show. The performances and the stories she tells about them make every single song special and I will hold on to all of it forever.
Because of the meltdown, I was in a really strange headspace: I felt far away and disconnected and kind of lost. So I couldn’t enjoy the show in the way I would have had I not had the meltdown. But I did enjoy it and looking through my photos and videos makes me so, so happy and grateful and proud that I managed to get there. And it helped somehow. I can’t really explain it but it helped. It’s like it filled in all the cracks with gold, to use a Japanese art form as an analogy.
I got home, went to bed, and got up the next day, ready to do the whole thing again, although without the meltdown (or so I thought). As an autistic person and a concert lover, I really like to go to shows twice where possible. With the lights, visuals, music, the scream, the energy expended, the energy expended getting there… I find it incredibly difficult to process everything and I get overwhelmed very quickly. It all starts to pass through me without really landing. Fortunately, the only thing I really spend money on is concerts so that is something that I am sometimes able to do.
For several days after a meltdown, I feel really, really fragile. So my Mum – my hero – said she’d come to the show again. Thank goodness she likes Halsey too. So we drove up to London, got to the venue, and really enjoyed the show. My god, Halsey is just so good. And seeing it twice just meant that I could take in all of it and that was just so amazing. Some of my favourite moments include (I could easily list everything but I’ll try my best to just keep it to a few):
There are so many more moments I could name but I’ll leave it there. They were two really incredible concerts and I feel so lucky to have experienced them.
When the show finished, I was absolutely exhausted, physically and mentally. Walking down the stairs to the venue exit was physically painful. I’d specifically bought a seated ticked because I don’t have the energy at the moment to stand for such a long period of time but there were two girls who stood for the whole thing (almost everybody sat behind them ended up standing in the aisle so that they could see – they refused to sit down or move despite the disruption they were causing) so I kept having to stand up to see. My whole body hurt by the time it was over. Apparently that’s another unexplained Autism thing: fatigue and pain and so on with no obvious cause.
We made it out of the venue and were halfway across the street – standing on the traffic island – when an ambulance less than a few feet away turned on its siren. I don’t know if I can really explain it: it’s something so deeply rooted in emotions and sensory stuff that I’m still searching for the right words. I might never find them. But the sound – the high-pitched, ear-splittingly loud sound – just completely overwhelmed me in a split second. It was like it blew a fuse in my brain and suddenly I was screaming and my knees buckled and I would’ve hit the ground if Mum hadn’t caught me. At some point the screaming turned into crying and shaking and somehow my Mum got me onto the tube, back to the car, and home to my bed and my cats. It took most of the journey before my brain reengaged and I could think in complete sentences but even then I couldn’t talk. It just took too much energy.
We got home, went to bed, and I spent the next few days recovering. In truth it took me over a week to feel like myself again and to process and commit to memory the amazing moments from the concert before the meltdown, before my brain shut down. It was a lot to make sense of. Meltdowns are traumatic and I don’t use that word lightly. I will write more about them, when I’m in a more stable, more composed place. I’m more than a bit all over the place at the moment. But this page here is an amazing resource so do have a look at that if you want to know more about meltdowns (and shutdowns).
And just in case:
Thank you Halsey (I never know whether to think of you as Halsey or as Ashley). Thank you for an amazing show and a treasured experience. It might’ve been a rough weekend but the shows were worth the meltdowns. Concerts make me feel alive, make me feel real. You gave me that and I’m really grateful.
Category: autism, depression, emotions, event, meltdowns, mental health Tagged: actuallyautistic, anxiety, asd, ashley frangipane, autism, autism in girls, autism in women, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, badlands, concert, depression, halsey, hfk tour, hfktour, hopeless fountain kingdom, hopeless fountain kingdom tour, live music, london, meltdown, meltdowns
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
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.