Posted on November 5, 2023
TW: Mentions of self harm and suicidal thoughts and urges.
It’s been a year since I started therapy again after an unintentional break, essentially starting again with a new therapist. It’s been a hard and emotional process, and at times a distressing one; just going to therapy can make you feel so vulnerable and so open to further hurt as you dig into the hard stuff – wading into dark waters that you’d rather ignore and pretend don’t exist, even as they’re eroding your mental health – that adding difficulties to that already difficult thing can feel unfairly cruel. So, given that I’m me, I thought that, perhaps, writing about it might be helpful and maybe not just for me but for anyone going through a similar transition. And if not helpful, then hopefully validating in some way.
I’d been seeing Therapist A for almost seven years when everything changed. She was taking leave and I was on my own.
Pre-2021, I’d seen Therapist A once or twice a week pretty consistently since early 2016. Even when the UK went into lockdown due to COVID-19 at the beginning of 2020, we continued our sessions online; I didn’t find them as productive but it was better than nothing. We continued that way for a while, trying to manage my crippling anxiety over the pandemic, working on issues that came up as I persisted with my now online Masters classes, and continuing to work on the issues that had landed me in therapy in the first place. But then the schedule began to slip: Therapist A’s home life was pulling her away from work and I was working myself into the ground in order to complete the final project of my Masters. I barely saw her in the last four months of the course, which I really struggled with: I was digging into some pretty hard stuff, writing song after song about my experience of being autistic, and I craved that safe space to play them to her, to hear her perspective on what I was saying, talk about the feelings they were bringing up, and she wasn’t there. I told myself that it was a short term thing and that, once the Masters was over and her stuff was resolved, the schedule of our sessions would go back to normal. I think it’s safe to say that, given the title of this post, it didn’t.
I finished the Masters in September 2021 and officially graduated, walking the stage, a few months later in November. I had reduced and stopped taking Phenelzine at this point, in preparation for trying ADHD meds (and we all know how appallingly that went), and my depression was creeping back in; the situation was getting pretty desperate. But luckily, that was when Therapist A reached out and we started having sessions again. We had a lot of catching up to do but, by mid-December, we were up to date. Unfortunately, the ADHD medication was already hitting me hard and my depression had gone from a state I recognised to a whole new level of despair with increasingly overwhelming suicidal thoughts. My most vivid memory from that time is sitting in Therapist A’s new office, staring at the unfamiliar rug and hearing my voice in my ears as I confessed to those thoughts, my voice completely flat (this is known as ‘flat affect,’ a recognised symptom of depression and other mental health conditions). It still makes me nauseous to think about, even though so much time has passed and my depression has gotten so much worse since; I think, in my head, that was the beginning of this awful, awful time.
My last session was on New Years Eve and I was drowning, all of the impending new beginnings feeling more like a threat than a promise. When we hung up, I felt achingly hollow and that was only the beginning of a terrible night. But that’s a story for another time. January was passing around me, aimless and anxious, when I finally heard from Therapist A. But instead of setting up our next session, she was letting me know that she was taking leave indefinitely. Her reasons aren’t mine to tell but, between those, my ongoing abandonment issues, and my overwhelmingly bad mental health, I was devastated, spiralling into some grotesque hybrid of a meltdown and a panic attack that went on for hours: I screamed, I cried, I scratched at my face, I tore at my hair, I shrieked like an animal in pain. I guess that’s what I was. I felt like I was trying to exorcise a corrosive demon from my body but nothing helped, nothing alleviated the pain. I was shattered as brutally as if I’d been hit by a wrecking ball. That’s what it felt like, what my life felt like.
Eventually I physically ran out of energy and fell asleep, too tired and emotionally drained to even engage with the world. My depression became more and more overwhelming, compounded by the devastating effects of the ADHD medications and the loss of a massive source of support in my life, and, for months afterwards, I barely got out of bed, barely ate, barely talked. I abandoned social media and I avoided mirrors at every opportunity, to the point where I started to forget what I looked like. The suicidal thoughts were only getting stronger, stronger than they’d ever been in my life, and the feeling of being intrinsically, irreparably broken was – and is – a constant weight in my chest.
I’m not sure when or why I started getting out of bed, why I decided that I needed to go back to therapy. I think I knew I was getting into a very precarious position mentally and the excruciating pain of being inside my head was getting so unbearable that I was willing to do anything to lessen the pressure. I did see a consultant at the local mental health unit but the experience was another traumatic one: after a panic attack at the front door, a junior doctor took my history and then brought in the consultant who told me about ECT and the Ketamine trials before telling me why I shouldn’t do them and recommending doing more of the things I love (which I’d already told him I couldn’t engage with because I was so depressed). So that didn’t improve my relationship with doctors and the medical profession.
For a short while, I worked with a therapist I’d met several years previously but the sessions only made me feel worse and while I have no doubt that it wasn’t intentional, I ended up feeling more broken and more traumatised by some of the things he said, trauma that I’m still carrying around with me. So I stopped seeing him and met with several new therapists, trying to get a feel for them and their methods before committing to someone new. But, just like with Therapist A, Therapist B was the first of the group that I met (a year ago yesterday, I believe) and between her therapeutic approach, her personality, and the fact that she’d brought along a dog she knew in order to put me at ease, she was the obvious choice.
As therapists, they both trained in several of the same disciplines and their skillsets overlap to a certain degree but, when discussing a particular issue, there were differences to how they’d approach it; there has been a fair amount of whiplash in getting use to Therapist B’s approach after so many years with Therapist A. But the point of this post isn’t to compare them – they’re both lovely people and very good at what they do, at least as far as I can tell – but rather to reflect on the process of moving from one to another and the feelings that that kicked up. And a lot of feelings there were – I even wrote a song about it called ‘Grave Digger.’ During the early sessions with Therapist B, we made a timeline of my life and discussed some of the biggest moments, many of which were difficult and distressing (and remain so to this day). Revisiting and recounting the hardest parts of my life was gruelling but I did my best to push through the internal resistance and breathe through the resulting turmoil; between that and the ongoing mental anguish, it was a difficult few months. I don’t mean to make it sound like one continuous torture because that isn’t true -we’ve talked about the good experiences that’ve made me who I am, of course, and there have been sessions where we’ve laughed a lot – but I think that building a strong relationship with a therapist and making progress will always involve periods of incredible vulnerability, which is always scary and, at times, painful.
Sometimes – okay, often – I feel like I’m not making any progress at all, partly because of all the disruption and the distress it’s caused. A year ago, I hadn’t expected to see 2023 and my depression and chronic suicidal thoughts haven’t lessened, even though I am taking Phenelzine again (at a higher dose, in fact) – after many discussions with Therapist B. It has made me more functional, to a certain degree, but the decision came with a price tag: my self harming escalated from cutting my arm to cutting my face. I’m not convinced anything’s changed; I don’t feel any better. But I can see that some things have changed and changed for the better, even though I can’t feel the effects yet: something has allowed me to start talking about some of the worst stuff in my brain, even if only a little. It’s something I could never have imagined doing so I know that that’s progress, even though I struggle to feel it.
I have heard from Therapist A several times now; the news has generally been positive, which has been a great relief (and I appreciate having a little less uncertainty in my life). Therapy is continuing as normal – the current version of normal at least – which I’m pretty sure is a good thing: the idea of trying to work my way through all of the emotions that I know would come up as a result of any potential change makes me feel physically nauseous.
I’m not always convinced that I’ve adjusted and sometimes I forget that I’m not going to see Therapist A, my body moving in the direction of that office as the car turns down a different road; that experience is more ingrained than I had realised at the time. And I know I’m still carrying a lot of hurt and anger over the whole thing, even though over a year has passed. I’m not angry at the people involved – nobody chose any of this – but there is anger and, although I’ve been slower to realise it, hurt too. I think it’s easier to be angry than to be hurt. Not always but sometimes. And, as I said, I have abandonment issues, issues that I’ve struggled with for a long time, which – unsurprisingly – have been exacerbated by this whole thing. It’s hard to lose someone that you trusted to never leave (a naïve ideal, I know) and it’s hard to trust someone new, ignoring the whispers that they’re just another person who will inevitably walk away. I think these issues are important to mention but they probably need their own blog post rather than taking up space here: when talking about changing therapists, it’s not something that everyone has mixed into the equation. All of that said, I’m trying to trust and I think that, for the most part, I am, even if it does sometimes feel like a conscious, concentrated effort. The progress isn’t as fast as I’d hoped it would be when I committed to therapy again last year but the proof is there. I’m sharing things I never thought I’d share and that’s certainly not nothing.
Category: about me, anxiety, autism, covid-19 pandemic, depression, emotions, medication, meltdowns, mental health, self harm, suicide, therapy, treatment, university, writing Tagged: abandonment, abandonment issues, actuallyautistic, adhd, adhd medication, antidepressants, asc, asd, attention deficit hyperactivity disorder, autism, autism spectrum condition, autism spectrum disorder, autistic, autistic adult, autistic artist, autistic meltdown, autistic songwriter, covid, covid-19, cptsd, dbt, depression, dialectical behaviour therapy, ect, electroconvulsive therapy, fear of abandonment, flat affect, graduation, ketamine, ketamine trials, masters, masters degree, masters degree in songwriting, medical trauma, medication, meltdown, mental illness, online therapy, panic attack, phenelzine, radically open dialectical behaviour therapy, rodbt, self harm, self injury, songwriter, songwriting, suicidal, suicidal ideation, suicidal thoughts, suicidal urges, therapist, therapy, trauma, trd, treatment resistant depression, university
Posted on July 8, 2023
After the Hypermobile Ehlers-Danlos Syndrome diagnosis, one of my many referrals was to the Pain Clinic (something I didn’t know existed). At that point, I’d been in pain for about eight months and the fact that this thing even existed had me feeling optimistic for the first time in ages. But then the weeks started passing and that feeling faded. In that time, I believe there were a number of other referrals from the Physiotherapy and Occupational Therapy services so I don’t know how many times they actually had requests about me but someone finally got in touch five months after the initial referral.
This post spans from May 2021 to April 2022.
MAY 2021
The initial contact was over the phone. We got a call from one of the Pain Clinic team and we had a long conversation; we were on the phone for an hour. She asked me loads of questions and got a detailed history; she also talked me through what the Pain Clinic does and what they can provide. She went away to go over the notes she’d made and figure out what a good next step would be and we had a chance to think about what might be the right path for me.
JULY 2021
Seven weeks after the first call, we got a second call from a different woman; apparently she had a different background to the first woman we’d spoken with and had a load of different questions. We spent another hour on the phone and before we hung up, she told us that she would be taking her notes to the team (which is made up of a group of different clinicians and therapists) and that they would get back to me with their suggestions.
Two weeks later, she called back and, after some discussion, we decided that seeing a pain psychologist was the best way forward – understanding pain, understanding chronic pain, figuring out the triggers, learning how to manage it, and so on – and she set up the first of the six sessions.
AUGUST 2021
The first session was an hour long video call. We’d somehow missed the information packet that the pain psychologist had sent but she was kind enough to go through a lot of the information – a basic understanding of pain – during the session. It was okay but it was very focussed on managing pain, which felt incredibly frustrating: I was fine until May 2020 and then suddenly I was in pain and at no point had anyone stopped and asked why and I want to know why. But no one seems interested in figuring out the why. I got very upset: I spend my whole life just managing things. I don’t even really feel like a person anymore, just a collection of problems that need managing that leave me no space or energy for actually living. The call ended in tears with me curled up in a depressed ball on the sofa.
Given how much the appointment had taken out of me, we decided that it was just too much while I was in the final stretch of my Masters, which the psychologist was really supportive of, and we arranged to start again when it was over so that I could really make the most of the sessions.
OCTOBER 2021
I had my second session five weeks after I finished my Masters (I was completely exhausted from the final semester and, with my Granny’s death, it took me a while to find my feet again). It was mostly a catch up about how my pain had been since the first session; we talked about how constant it had been (just sometimes better, sometimes worse), how it doesn’t seem to be triggered by anything specific. I got so distressed just talking about it that the psychologist suggested that we talk to the advanced practitioner for more insight into hEDS related pain. She said she’d talk to their team and recommended I talk to my GP about a better pain medication. We, again, agreed to pause the sessions until we had some clarity on those two things. I still haven’t found a pain medication that works reliably but it wasn’t long before we got a letter for an appointment with the advanced practitioner.
NOVEMBER 2021
At the beginning of November, I had the appointment with the advanced practitioner. In hindsight, it was probably doomed from the start, considering how unwell I was having just started the ADHD meds – I had to stand outside for a good ten minutes trying to get the nausea under control. And then, just because things had to get worse, I got hit by the electric shock like pain in my back right as the appointment was starting; I could barely hear what everyone was saying, the pain was so debilitating.
As it turns out, there had been some sort of confusion or miscommunication because the two doctors were under the impression that they were showing me some physio-like exercises rather than give me guidance about hEDS related pain as I had discussed with the pain psychologist. One of them just kept talking about all of the “ingredients” of pain – like diet, sleep, exercises, medication, levels of anxiety, emotional state, and so on – and after a while, I just couldn’t keep my mouth shut. I was upset, in pain, and feeling so sick; I just couldn’t listen to another person give me vague advice without telling me how to actually apply these things to my life with all of my problems. And, on top of that, I was sick of everyone dodging my questions: why would this pain just start and why is ‘management’ the only thing being talked about? Why is no one interested in finding out why it started and whether it can be fixed? When the pain started, the only thing that had changed was my anxiety over the pandemic and it’s not like I was the only person who was experiencing that. So why did it start? If it can just appear, what’s to say it can’t disappear again if I do the right things (which obviously relies on me knowing what the right things are)?
Eventually this doctor gave me a somewhat murky explanation: that the trauma of the autistic challenges and the anxiety relating to the pandemic, compounded by the de-conditioning of the stabilising muscle in the early months of the pandemic, has resulted in the pain I’ve been experiencing. I’m not convinced by this but it’s the closest thing to an explanation that I’ve received so far. Anyway, they said that they’d take my case to their multi-disciplinary meeting and see what the suggestions were. I’ll take what I can get but I didn’t have a lot of hope: the last time I was in a similar situation, the Chronic Fatigue Service told me my case was too complicated and then just abandoned me. I’ve also had NHS doctors tell me that the NHS can’t help me and that I should go private – like that’s the automatic next step. They do know how expensive private healthcare is, right? Particularly if you have a chronic condition? So I did not leave that appointment feeling optimistic.
Later that month, we got a letter informing us that the original referral to the Pain Clinic from December 2020 had just gone through. Eleven months that took. I’m trying to be grateful that one of the other referrals went through faster but it was hard when it felt like we hadn’t made any progress at all.
APRIL 2022
The pain had reduced some by the end of 2021 but it flared up again (mostly in my hips and lower legs) in early February, which was likely exacerbated by my lack of movement while struggling with the effects of the ADHD meds – extreme nausea, depression, insomnia – and therefore not swimming. Things were better for a while – between more daily movement and starting hydrotherapy – but then it flared up again in late April, with awful pain in my elbows, arms, and hands.
When I realised how long this post was getting, I decided to split it up by year (yeah, because the whole process took actual years). This is the first instalment from Spring 2021 to Spring 2022. The next part will be up soon.
Category: adhd, chronic fatigue, chronic pain, covid-19 pandemic, death, diagnosis, emotions, exercise, heds, hydrotherapy, identity, medication, mental health, sleep, therapy, treatment, university Tagged: adhd, adhd medication, advanced practitioner, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, chronic fatigue, chronic fatigue service, chronic pain, covid-19, diagnosis, ehlers danlos syndrome, gp, heds, hypermobile ehlers danlos syndrome, hypermobility, masters, masters degree, nausea, nhs, occupational therapy, pain, pain clinic, pain management, pain medication, pain psychologist, pandemic, pandemic 2020, pandemic anxiety, physiotherapy, private health care, side effects, swimming
Posted on January 1, 2022
In hindsight, I don’t really know what I was thinking, setting goals when I had no idea what the year was going to look like. I’m not really surprised that I haven’t done as well as I would’ve liked, had the year been a normal year. But it wasn’t a normal year and I try to remember that when I feel myself getting stressed.
FIND A RHYTHM IN THERAPY AGAIN – This has been a tricky one. For various reasons, my therapy was fairly erratic for the first half of the year and then I wasn’t going at all until just a few weeks ago. A lot has happened and a lot has changed and going back is hard; it feels like I’m learning how to do therapy all over again. But we’ve worked through tough periods before. There’s no reason why we can’t figure out this one too.
PROGRESS WITH MY INVISIBLE BRACES – Okay, I officially failed at this. I’ve actually slipped backwards, going back to an earlier mold. It was just that, with everything going on, sleeping was the one time where I didn’t feel some sort of sensory overwhelm and I was so reluctant to lose that one safe space. I have worn it a little but not enough so I need to figure out a more manageable way to wear it.
WORK ON MY CORE – This has been a tricky one. Since the lockdown ended, I’ve been swimming as much as I can (and feel able to depending on various things: mental health, COVID numbers, etc) and I do feel like it’s helped, although it doesn’t feel like the pain mirrors how much or how little swimming I’m doing. Eleven months after the Hydrotherapy referral, I got a Physiotherapy appointment which resulted in them referring me to Hydrotherapy and a month or so later, I finally got a Hydrotherapy session. I’ve been doing the exercises by myself and I have a follow up appointment in the new year to make sure everything’s happening as it should. It’s too soon to know what effect it’s having but hopefully it’ll help with some of the problems caused by my EDS.
COMPLETE MY MAJOR REPERTOIRE PROJECT – I did it! It was hard work and utterly exhausting and, by the end, I was working twelve (or more) hours a day but I absolutely loved it. I loved being totally absorbed by one project and just writing as many songs for it as possible. I did struggle to balance what I wanted to do with the project with what I needed to do for the grade (although it’s true that trying to meet that criteria did result in it being a better project) but I had a fantastic supervisor, who was passionate and knowledgeable about a lot of the same things as me and who was also neurodivergent, which I think made a big difference when it came to tackling problems and her general support; my project was better because of her help. The day of my final presentation was a bit anti-climactic after everything and suddenly it was all over. But I’m so proud of the work I did, the many songs I wrote, and the mark I achieved, my highest out of every module. I’m so relieved, so happy, so proud, and so grateful to everyone who helped me get there. It was the best part of this year, easily.
FINISH MY MASTERS DEGREE – I still kind of can’t believe that I did this, given everything over the last couple of years. It’s so weird to look back at the beginning of the Masters in late 2019, knowing what I do now. But I did it: I completed my Masters Degree in Songwriting. During a global pandemic no less. But despite that, it was still an amazing experience; I met a lot of incredible people, I did a lot of work that I’m so proud of, and I got so much out of it. I’m so proud of my final project in particular and it was amazing to get such a high grade, as well as the Outstanding Student Award at graduation; that meant so much to me after everything that went in to getting the degree. And while I am excited for what comes next, I’m also really, really sad that it’s over; that’s the end of my education at ICMP and I don’t want my time there to be officially over. I loved my BA but doing an MA was the best thing I’ve ever done. It was beyond difficult and there were times when I hated it but it was an amazing experience and I’m so proud of myself and the work I did.
MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Yeah, no, I did not manage this. I’m barely managing to keep up, let alone clean up the messy notes I’ve been keeping over the last two years. My diary writing is in a state of chaos right now. It takes up so much time and causes me so much anxiety but I can’t stop; my OCD won’t let me. So I’m just keeping on keeping on; I don’t know what else to do.
WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – I think it’s fair to say that this is probably something I’ll be working on for the rest of my life; it’s not something that will ever be done, complete. I’m not sure if I’d say I’ve made progress with this but I do think I’ve learned a lot about myself and my insecurities. Two big factors that affect those insecurities are my mental health and how much I’m writing. When my mental health is good and I’m doing a solid amount of writing, I feel more comfortable and confident in myself and what other people are doing doesn’t feel scary or upsetting; they feel inspiring and exciting. But when my mental health is bad – and thus, my ability to write disappears – everything feels just too much. So most of the year was great, apart from a few dips, but my mental health hasn’t been great over the last two months – or in other words, completely fucking awful – so that’s what I’ve been focussed on: trying to make that better.
FIND MY NEXT PROJECT – This goal kind of makes me laugh now. To think I wanted to find my next project and now I have more projects than I know what to do with. It’s kind of stressful, trying to manage so many things at once, but it’s also wonderful to have so many things that I’m excited about. They’re all in process right now and I don’t know how they’re going to turn out so I don’t want to say anything yet, but I definitely found my next project.
This year has been a hell of a year for many reasons and while there were many negative surprises, there were also positive ones; those just aren’t always visible in the review of goals set at the beginning of the year. I’m really proud of a lot of things from the last twelve months and, given everything that’s happened, I’m actually kind of impressed that I was able to complete any of these goals at all. So I’m trying to focus on that.
Category: about me, covid-19 pandemic, depression, emotions, heds, identity, mental health, music, ocd, therapy, treatment, university, writing Tagged: 2020, anxiety, comparing, comparing myself, comparison anxiety, depression, diary, diary writing, eds, final project, goals, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, independent artist, invisible braces, journal, journaling, masters degree, masters degree in songwriting, memory hoarding, mental health, mental illness, music, new years resolution, new years resolutions, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, physiotherapy, plans, reflection, self confidence, self esteem, songwriter, songwriting, therapy, university

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Finding Hope