Changing Therapist

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.

Seeking Help For Chronic Pain (Year One)

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.

A Year of Autonomic Testing and A Discovery of POTS

After I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, my Mum and I did quite a bit of research. There were a lot of things that suddenly made sense and one thing that caught our attention was mention of autonomic issues, like dizziness, fatigue, chronic pain, brain fog, problems with heart rate and blood pressure… These were all problems I’ve either struggled with or had investigated in the past so, with the hEDS diagnosis and the help of my GP, we started following that path to see if it yielded any answers.

As you can see, this post has been a long time in the writing. I didn’t want to post anything until I had something to say really, beyond descriptions of the tests, but then it all just went on and on and on. Everything moves so slowly and it’s very draining. I have to hope that things are better for knowing what I’ve learned from all of this but it’s also been a very trying, sometimes traumatic experience.


MARCH 2021

It began with a phone call appointment with a neurologist, a specialist from a neurology unit in London (which I talked about in this post). It wasn’t a fun experience. The call came two hours late, it wasn’t the person it was supposed to be, and then he spent twenty five minutes of the half hour call telling me that there were tests that they could do but that they’d probably be a waste of time. It just left me feeling really confused and upset. He had eventually said he’d write to my GP about doing some tests but after the way he’d been talking, I didn’t feel very hopeful about it all. After he hung up, I didn’t quite have a meltdown – it was like I didn’t have the energy that a full on meltdown requires to happen, like a rocket needing a certain amount of fuel or whatever to launch – but it was close.


MAY 2021

Despite his apparent reluctance, the neurologist did in fact write to my GP and the blood pressure monitoring was arranged. It took forever – I think because of a shortage of the monitors – but the day did eventually arrive (I wrote more about it in this post). I went to the hospital to have the monitor fitted and to get all of my instructions; the whole thing was relatively chill (not my general experience when it comes to the medical field) and the two women who went through it all with me were really great.

It wasn’t too bad. The cuff got very tight so it was hard to forget it was there and just do the day as normal but it was fine. I did find it hard to get to sleep but the squeezing didn’t wake me up, which I was grateful for. My arm did hurt like hell in the morning, like I’d been punched repeatedly; I was convinced my arm would be bruised afterwards but it wasn’t. I couldn’t get the monitor wet so I couldn’t have a shower until after I returned it but since that’s usually when the blood pressure related symptoms present, we faked a shower: I stood for the same amount of time in the bathroom with the shower on (so that the hot, steamy environment was the same as if I were having a shower) and let the monitor take its readings. I felt shaky and dizzy and lightheaded so it should have read as if I really had had a shower.

I got through the rest of the twenty-four hour period and then took it off, to my great, great relief. My arm was sore from the squeezing and the cuff was pinching in various places. I also had that Autism thing where the constant pressure for so long was causing me anxiety, like wearing my retainer for too long. The anxiety had been growing for most of the second day so I was very relieved to be free.


JULY 2021

The second round of monitoring involved a little stick-on patch with sensors over my heart, which had a little monitor that could be attached (and then detached for a shower) to measure my heart rate. I was supposed to wear it for a week and while it wasn’t exactly comfortable and sleeping with it attached wasn’t great, the first few days went smoothly for the most part.

But, after several showers, the patch started to peel off. The sensation of it constantly brushing my skin and the itchiness of the glue (or whatever it is) as it disintegrated was quickly overwhelming and I was regularly finding myself in meltdown territory. It was creating so much anxiety that we got in contact with the people who’d sent it and they said that after roughly four days of readings, it would be fine to take it off, that they would have enough data. Removing it actually really hurt and I think me and my super sensitive skin had some kind of reaction to the adhesive because it kind of looked like I’d been burned where the patch had been for a couple of days after.


AUGUST 2021

Alongside the blood pressure and heart rate monitoring, there were a series of other tests but it was a while before I got the letter to tell me that they’d been scheduled. The first of the two appointments was in August and was a bit of a mixed bag as an experience. Despite the letter from my GP that said I’m autistic and have an anxiety and therefore need to have someone with me for hospital appointments, the receptionist almost didn’t let my Mum come in with me. I was somewhere between walking right back out and having a panic attack (said receptionist actually asked me if I was okay, which I thought was a bit rich) but fortunately it was all sorted out and after a little bit of time to collect myself, the testing went ahead. The doctor for this particular appointment (I don’t think I’ve seen a single doctor more than once through this entire process) was nice and didn’t rush me at all after the somewhat upsetting start.

The testing was fairly straightforward. They wrapped me up in monitors (I’m not going to lie – I kind of loved all of the hand ones for taking my pulse and stuff because it kind of felt like I was having superpowers measured or something, which was much more fun to think about) and then ran me through a series of tests: standing for certain periods of time, breathing exercises (which reminded me a lot of the warm up exercises I used to do during singing lessons), squeezing an inflated pressure cuff (my hypermobile fingers made this one pretty difficult), and so on. There was still the tilt table test to go but I had to come back on a separate day for that one.

Just like with the day of blood pressure monitoring, they didn’t tell me anything about the test results. Once they had all of the data from all of the tests, they’d call me in to discuss it all. I could understand that but it was frustrating when the whole thing was taking so long.


SEPTEMBER 2021

Late September, I was back at the hospital for the tilt table test. I was all wrapped up in the monitors again  and they strapped me (not uncomfortably) to the exam table so that when it moved from horizontal to almost vertical, I wouldn’t slide or fall. Everything was fine while I was lying down and they got all of their readings and then they adjusted the table so that I was almost upright.

It took about twenty five minutes before I started to feel noticeably bad. Like, more than just not great. My hands felt numb and tingly, my legs were shaky, my chest started to hurt and I got very breathless; they let me take my mask off (everyone else was still masked and I’d tested negative before going to the hospital) but I was still breathing too fast, on the way to hyperventilating. While they had an approximate end time for the test, they decided to stop there; presumably they had the information they needed and I was honestly relieved to lie back down for a few minutes. I was breathless for a long time, my head hurt, and I was pretty nauseous. I had to sit for about ten minutes before I felt solid enough to get up and back to the car.

A week later, we were called in by the cardiologist to go over the results. It was a frustrating appointment: my information wasn’t there and we had to wait while the doctor called around and tried to get a hold of it all and then, when he got it, he waffled a lot without really saying anything so getting a clear explanation wasn’t easy. As far as I can tell, my heart rate goes a little haywire when I stand for a long time or exercise too vigorously. The cardiologist diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed me Propranolol to help with the symptoms. I’m not sure we’ve managed to get the dosage quite right yet but it is now in the right range and has been helping a bit: I’m less dizzy and breathless although that hasn’t gone away entirely (yet, hopefully).


FEBRUARY 2022

We had been offered more thorough testing at UCLH in London and we figured that it couldn’t hurt to have more information, especially from an institution that apparently has more knowledge and understanding, better resources, and so on. I was in and out of there for two days (ish), doing tests and helping them gather data on whatever weird thing is going on with my autonomic system. It was a lot but I was cautiously optimistic that what we learned would make managing the symptoms easier.

DAY ONE – We had to be there super early, which was a real struggle because the ADHD meds were seriously messing with my sleep, but I did somehow make it on time. Despite my doctor’s letter, the people at the desk and then the nurse didn’t want to let my Mum in with me. I was ready to walk out – I’ve been traumatised enough times by medical personnel that I wasn’t keen to add another tally mark to that particular chart – but Mum managed to talk to them and get them to understand. I was fitted with a blood pressure monitor, like the one from my first test, and gave me a diary to keep for the next twenty-four hours. It was similar to that first test but it required a lot more detail in the recording: I had to do certain activities at certain times, which were recorded by the monitor. It was quite a stressful and exhausting day, with the monitor bleeping continuously. I was incredibly tired (I fell asleep on the sofa more than once) and I struggled to keep up with the activities they wanted me to do – it feels like the ADHD meds have fried my brain somewhat. And then, because my sleep was so messed up, I didn’t get to sleep until after three.

DAY TWO – Waking up and get to the hospital for eight am was excruciating and the fact that I was only about ten minutes late was a miracle. Fortunately, they weren’t completely on time either. The testing that day was all done in the hospital, in one room, with one woman who was, fortunately, really nice. I spent most of the appointment lying on the exam table, hooked up to various monitors and performing different tests. Quite a few were the same as the first tests I did but there were some new ones too, like having my hand wrapped in an ice-pack for what felt like ages (although it wasn’t actually that long but my god, my hand hurt afterwards). She tried to draw blood for additional information but she couldn’t get a vein in either arm (I think that may have been due to the fact that I’d been lying down for a couple of hours at that point and so my blood pressure was weird but I’m not a doctor so what do I know) and that was uncomfortable with nothing to show for it but oh well; it apparently was a bonus if they got it.

The last part was the tilt table test and I wasn’t as affected as I had been the first time I’d gone through it but it still wasn’t pleasant. And after that, I was done. After lying (and then standing) in one position for so long, I was really stiff and my hip and knee joints were so sore that I could barely walk. I was absolutely exhausted. I made it back to where we were staying and fell asleep on the sofa straight away. I woke up for food (I hadn’t been able to eat before the appointment) and then went straight back to sleep. I was utterly drained and it took me a few days to recover fully.

Again, they didn’t have all of the results for me at the end of the appointment: those would go to the team meeting that was within the next two weeks and then they would call me with a plan, another appointment, or whatever. I think it’s safe to say at this point that my expectation of it taking more than two weeks was correct.


MAY 2022

UCLH sent a letter with a brief explanation of their findings and a time for a follow up call where they would explain those findings in more detail and discuss next steps. That took a while to schedule because of other commitments so it didn’t happen until May.

It was a short call but the nurse was really nice and so knowledgeable. She ran through the test results and what they showed and confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome. She explained the effects of the Propranolol in more detail and said that I would be receiving an invitation to their next online meeting about managing the symptoms of POTS, which will hopefully be helpful. And on top of that, she gave me a few tips to try in the meantime. So it was a good appointment and I’m looking forward to seeing if her tips help and to the meeting, which should be within a couple of months or so.


So now I’m waiting to hear about the online meeting. I haven’t had many good experiences with sessions like these but I’m nothing if not chronically optimistic; maybe this one will be better. But just knowing that POTS is the cause of the symptoms is a step forward. And the Propranolol seems to be helping although I’m not sure that we’ve got the dose quite right yet.

I wanted to write and post more about Borderline Personality Disorder during BPD Awareness Month but I’ve been really struggling with my depression and changing medications and it’s all been a bit too much; I’ve found it hard to write anything at all. I’m still trying and hopefully I’ll have something BPD related up next week, plus I have a few other posts that I’ve started that I hope to finish and post in the not too distant future.