Posted on August 18, 2018
This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.
I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the mental health diagnoses.
My mental health problems became very acute when I failed an exam at sixth form in March 2013. I was eighteen and it was the first time that had happened. There’s a lot of stuff behind why that was the breaking point but I’ll talk about that in a different post. Otherwise we’ll be here forever; I’m already splitting this post in half. I hadn’t been oblivious to my mental health up until that point but I hadn’t recognised the signs for what they were; my knowledge of mental health had been pretty limited. But I’d always felt like there was something wrong with me (I now know that it’s different rather than wrong but that’s how it felt and sometimes still does feel) and I know that my depression and anxiety had been building up to that moment, that critical incident.
After that, I started seeing a psychiatrist that a family member had recommended (my GP had been unhelpful at best and distressing at worse). He diagnosed me with Clinical Depression and gave me an anti-depressant called Paroxetine to try. I don’t have enough experience to judge whether he was a good psychiatrist or not but I don’t remember feeling particularly supported by him. I only saw him a few times before I switched to a psychiatrist closer to where I lived. The Paroxetine made me incredibly sleepy; it was like they put me into a waking sleep that I still don’t feel I’ve really woken up from. I switched to Sertraline but that was even worse: I felt like a zombie and that was so upsetting that I (unwisely) stopped taking it cold turkey. That was a Bad Move, such a bad one that I still capitalise the first letter of each word. For a while I was very dissociated and then my anxiety came back, even stronger than it had been before. So I was a bit put off by medication but the diagnosis was helpful and I started going to CBT.
That ended up not being the right thing for me and the energy it took was just too much so I quit, not forever necessarily but I needed a break and we wanted to explore some of the other options. I tried several other things over the next year before deciding to try medication again. Both that first psychiatrist and the CBT consultant had been private but I couldn’t get the NHS to help me. I have to say here that I have so much (SO MUCH) respect for the NHS. It has saved the lives of several of my friends and I will defend it to the death but I don’t feel it has yet got it right when it comes to mental health. In my case, my anxiety was so bad that I found it incredibly difficult to talk to people I didn’t know. My Mum would explain the situation but we were repeatedly told that if I wouldn’t talk they couldn’t help. That was very distressing. Logistically I understand that it’s more difficult to communicate if a person can’t talk but that’s not an excuse to refuse care. The not talking was a result of my anxiety, which falls under their job description. They should’ve helped me. They should’ve at least tried. But they didn’t and I was struggling so much that we were forced to go private. I am endlessly, endlessly grateful that my family have been able to make that possible. It has, without a doubt, saved my life.
We found a new psychiatrist in the summer of 2014 and after such a horrible year, I was determined to make it work. I walked into his office, sat down, and started talking. I still don’t know how I did that. I was just as anxious as I had been before but I guess that’s desperation for you. Maybe it was my survival instinct. Anyway. My psychiatrist has since told me that he couldn’t believe I had such bad social anxiety because I had been so articulate and direct. Again, I’m putting that down to desperation (and I wouldn’t be surprised if the ability to mimic ‘normal’ behaviour – something that many girls with autism have learnt to do – came into play here too). But as I told him more, he started to understand where I was coming from and what I was dealing with. He put me on Phenelzine, which made a massive difference (I’ve written more about that here) and we continued our sessions so that he could get as much information as possible.
I wanted him to give me a diagnosis. I wanted a name for the thing (or things) that had so much power over me. I wanted to know what was really me and what was this indistinct, suffocating black shadow. I thought he’d have me do a load of diagnostic tests and questionnaires and then give me his findings but it felt more like therapy, but with a focus on my past experiences (rather than strategies to move forward). He didn’t seem in a hurry to find the answers and I didn’t know how to fast track the process. Eventually we got the deadline I wanted: my university said they couldn’t help me until they had an official diagnosis. But again, it wasn’t how I’d expected it to be and again, it was incredibly slow. Throw in that I’d just started university (which came with new people, new classes, and commuting into London) and I was under a lot of stress, as you can probably imagine. How I didn’t have more autistic meltdowns, I have no idea.
I couldn’t just do nothing. I spent hours searching the internet, looking for anything that might explain my experience. I examined diagnostic criteria and read medical papers; I scrolled through forums and took diagnostic tests. I’ve read a lot about the back and forth on self diagnosis (something I definitely want to discuss in more depth at some point) but for me, I needed a professional diagnosis, both to get the help I needed and to validate how much I’d struggled. Grouping my symptoms together and trying the strategies advised for whatever label fitted that group wasn’t going to be enough. So I used those test results as a starting point. Eventually I came across Borderline Personality Disorder and more specifically, the ‘quiet’ presentation of BPD. This means that they have many of the same symptoms (including mood swings, problems with self worth, unstable identity, and difficulties with relationships) but rather than ‘acting out’, they ‘act in’: they direct their negative emotions inwards, hiding them rather than projecting them onto others. Many struggle with issues around self hatred and self harm. If they lie or manipulate, it’s to protect themselves from perceived abandonment and they may avoid or distance themselves in relationships because they don’t want to be abandoned or because they feel they don’t deserve those connections. The ‘quiet’ presentation made a lot of sense to me because while I struggled with many of the problems associated with BPD, I rarely lash out so this felt like something to explore.
So, buoyed by momentum that discovery had given me, I took it to my psychiatrist. And he shut me down straight away. He said that I didn’t fit the criteria and moved on to something else. I didn’t understand: I was struggling with so many symptoms associated with BPD, almost all of them when you factor in the ‘quiet’ presentation. I couldn’t believe that it wasn’t worth, at the very least, a little bit more discussion. And at the end of the session, he said that he thought we’d done all we could do. I was devastated. And incredulous: we hadn’t achieved anything. If that was it, I was back to square one. Or minus one after everything the process had taken from me.
That session sent me into the worst place I’d been and after a particularly horrific meltdown, I spent several days in a fragile, barely responsive state. But once I recovered from that a bit, I got to work. I went back through my research and symptom by symptom, anecdote by anecdote, I wrote down everything I related to, everything I’d experienced, anything that could be relevant. It wasn’t that I was certain it was BPD, it was that I was certain it was something. This seemed as good an explanation as any and my psychiatrist wasn’t offering anything better.
When I was done, the document was seventeen pages. I’m pretty sure it was longer than my dissertation for university. And then we went back. I presented him with all my research and something very surprising happened. I’d hoped he’d accept it as something to explore and not only did he do that, he admitted he’d been wrong and apologised for dismissing it. Even now, that feels like a very important moment. In my experience, medical professionals aren’t naturally inclined to apologising, let alone admitting to being in the wrong. And I’d been ignored for a long time. When it came to my health, physical and mental, doctors had always looked at the most obvious option and then, when that didn’t fit, they’d just shrugged their shoulders and brushed me off. So this was a big deal.
And at the end of that session, I had my diagnosis. Or more accurately, my diagnoses. He pulled together everything he’d learned about me and diagnosed me with Borderline Personality Disorder, Anxiety, Social Anxiety, Depression, and OCD. It was a very strange experience. Momentous and anti-climactic at the same time. I felt light enough to float away but so exhausted and heavy that I wasn’t sure I could get out of my chair. I felt like I might burst into tears at any moment but I had this weird, hysterical urge to laugh. I felt invincible and incredibly fragile at the same time. Very strange.
Finally getting names for the monsters I’d been struggling with was incredibly validating. It was real. I wasn’t ‘crazy’ or ‘over dramatic’ or ‘too sensitive.’ It also made it real to everyone else. And although part of me was steadfast that something was wrong, I had started to doubt myself, having been dismissed by so many people. I was constantly fighting against falling into a well of despair, of fear that this was just going to be how life was for me. But the diagnosis confirmed that they were problems and most problems have solutions of some sort.
The diagnosis enabled me to get the support I needed at university and gave us some idea of what kind of talking therapy might help. Dialectical Behaviour Therapy (DBT) is recommended for people with BPD and that’s what I’m still doing, about three years later.
(I have no relevant photos for this post so here are a couple from around that time.)
Category: anxiety, bpd, depression, diagnosis, mental health, ocd, therapy, university Tagged: actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, borderline personality disorder, bpd, depression, diagnosed as an adult, diagnosis, medication, mental health, mental health awareness, mental illness, mental illness awareness, mental wellness, obsessive compulsive disorder, ocd, paroxetine, phenelzine, sertraline, social anxiety, social anxiety disorder
Posted on December 29, 2017
I meant to post this yesterday, which actually was the 100th day, but then I managed to break my memory stick, where the file was saved. So that threw a spanner in the works. But here we are. The files were recovered. No harm done.
I’ve been taking Venlafaxine for 100 days now so I thought it was time I compiled my notes and summed up the whole thing. I know that when I started taking it, it would’ve been really helpful to know about someone’s experience. My psychiatrist gave me all the medical information but that didn’t really prepare me for what it felt like. So if you’re about to start taking Venlafaxine or are thinking about it, maybe this will help you. And if not, maybe this will give you a little insight into one experience of taking medication for a mental illness.
Week 1 (Dose: 37.5mg)
The nausea was so strong that all I could think about was not throwing up. I was very dizzy and tired all the time. But it was much easier to wake up in the mornings, quickly rather than having to drag myself into consciousness.
The nausea faded a bit. I had headaches and was exhausted all the time. I continued to wake up early.
Week 3 (Dose: 75mg)
I was so tired that I fell asleep at random but I was still waking up early. I felt very faint and was too shaky to do anything but I had no concentration so I couldn’t do much anyway.
The week was overshadowed by severe, unexplained leg pain. I had several doctors’ appointments to rule out the medication and DVT, the next most likely explanation, but eventually it faded by itself. Aside from that, I felt a bit lighter emotionally.
I had some leg pain but it faded much more quickly. I was exhausted and very sleepy, regardless of how much sleep I got.
I was so very, very tired, so tired that I could barely do anything. But I was still waking up very early.
Again, still very, very tired but I was also feeling very anxious and depressed. I also noticed lots of bruising, especially on my legs that didn’t seem to have a cause. All I had to do was lean on something hard, like the edge of a table, and I’d have a bruise.
Week 8 (Dose: 150mg)
A bad week. I felt very disconnected and depressed. I was also exhausted so I didn’t have the energy to do any of the things that can help. I was also pretty unwell for a couple of days but I don’t know if that was related or just a coincidence.
I started struggling desperately to wake up. It was like being trapped between being awake and asleep. It took all my concentration to wake up but all I had to do was blink and all that effort is wasted and I have to start all over again. I was exhausted and sleepy all the time.
I was struggling desperately to wake up and still exhausted and sleepy all day.
I reduced the Quetiapine from 125mg to 100mg (which I was prescribed while taking Phenelzine to help me sleep – I’d wanted to come off it straight away but was advised to wait so that I wasn’t dealing with reactions from both medications), which made waking up easier but I was still exhausted, depressed, and without any motivation.
The sleepiness started to creep back in and I was still exhausted and without motivation.
Again, I was really struggling to wake up; I couldn’t stay awake but I also couldn’t get back to sleep either. I managed to get the Quetiapine down to 50mg but I wasn’t sure if it was helping or not. I still had very little concentration and motivation which was really difficult and upsetting.
Week 14 (Dose: 225mg)
To combat the sleepiness, I reduced the Quetiapine to 25mg so my sleep was very all over the place. I was waking up really early and not getting more than about six hours. But I did feel more awake and alert which was a relief. I had several really productive days and wrote two songs after not being able to write for more than six months. That gave me an evening of complete joy, something I can’t remember feeling. Unfortunately that only lasted one night and my mood dipped afterwards because I missed it so much.
My mood was fairly stable, no major ups or downs. I wasn’t depressed but I wasn’t feeling that positive either. I was tired and sleepy and feeling a bit lost.
I just wanted to draw particular attention to how long this process can take. When I started my last medication, I felt better very quickly but it’s been a very different story this time. It’s not as simple as taking the pills and feeling better. There’s the time it takes to decide or justify that you need a new medication (or a first medication), the time it takes to come off the old one, the time it takes to build up and adjust to the new one… I started this process in May and it’s now December. Seven months and I still don’t feel that much better. I’m hanging on to hope that things will start to get better – I’m holding on to that one really good day – but it’s hard.
I think there is a lack of understanding when it comes to this stuff. From the outside, it can seem like you’re not doing anything to get better and there’s a lot of guilt attached that, from other people and from yourself. But on top of whatever mental health problem you’re dealing with, there’s adjusting to the medication and whatever side effects come with it. That’s a lot. It’s exhausting physically, mentally, and emotionally and you shouldn’t feel pressured to do things you feel unable to or feel guilty about whatever you need to do to get through it. I’m still trying to learn this. I constantly feel like I’m not trying hard enough, even when I’m so exhausted that I don’t think I can get out of bed. But that’s a topic for another day.
I hope you all had a lovely Christmas and I’ll see you in the next post.
Posted on September 27, 2017
Just over a month ago, I decided to change medications. It was a long time coming but I eventually managed to speak to my psychiatrist and we came up with a plan. The first step was weaning myself off the Phenelzine and the second was going drug free for at least a couple of weeks to make sure it was out of my system before trying the new medication. I kept notes to track any patterns in mood and since I couldn’t find many accounts of coming off Phenelzine when I searched online, I thought I’d write about my experience. As always, this is only my experience, which will be specific to the dosage I took and the duration for which I took it.
I was already on half of the prescribed dose so, to start the weaning off process, I went down to a quarter of the prescribed dose. Very quickly I felt very irritable, snapping at people over things that normally wouldn’t bother me. I was also overly emotional and ended up in tears a lot, sometimes multiple times a day.
In the second week, I stopped taking the Phenelzine altogether. My anxiety skyrocketed and remained really high, higher than it’s been in a long time. My mood was also very fragile, so even small things made me very upset and depressed.
In week three (the second week without any medication), I felt completely exhausted; some days, I was so tired that I could barely get out of bed. I was very depressed and felt blank, empty, completely disconnected. It was like everything just bounced off me. I’ve gone through periods of feeling like this before so, even though it isn’t pleasant, it wasn’t unfamiliar.
Although I’d already been off the Phenelzine for two weeks, I decided to wait a little bit longer before trying the new drug. It was two weeks minimum and I’ve always been very sensitive to medication so I wanted to make sure it was completely out of my system before starting the next one. I didn’t want any chance of an overlap distorting that experience; I didn’t want to risk writing off something that could help over something as small as a few more days. For that last week, I was just really tired. My mood seemed to stabilise a bit and everything just felt less turbulent. It was that settling of my mood that made it easier to think more clearly and I felt ready to try the new medication.
It’s worth pointing out that my mood has been consistently low throughout all of this. I’ve had a couple of days where I felt a little bit lighter but on the whole, I’ve been feeling very depressed, hence the change in medications.
And now I’m onto the next stage: trying the new medication. I’m nervous but I’m really ready not to feel like this anymore.
Posted on August 26, 2017
It’s time for a change.
I’ve been taking Phenelzine, also known as Nardil, for almost three years now and while it’s been a great help to me, I need to try something else. The last few months have been very difficult and to cut a long story short, I’ve been diagnosed (for the second time) with Clinical Depression. I’ve been finding it really hard to take my medication, knowing the effects it will have on me. It might sound strange but, when I take the Phenelzine, my mood lifts and feeling the way I do at the moment, I’m really struggling with that. I find it really hard to try and feel ‘okay’ when everything is ‘not okay’. To me, this makes complete sense but I can also recognise that I’m waiting to feel better while avoiding things that actually might help.
I think my problem with Phenelzine is how familiar I am with how it affects me. Having taken it for so long, I know exactly how it changes my mood. That used to be a good thing but now… Now, the ‘happiness’ it makes me feel just feels fake because I know it’s caused by the Phenelzine. I think it’s important to point out here that, objectively, I know that there is no difference between ‘real’ happiness and happiness caused by medication, and that I have always been a real advocate for taking medication (if you need it and it’s recommended). That belief hasn’t changed. But my familiarity with this medication is now making it difficult for me to take it so I need a new approach. It’s time to try a different one. Hopefully not knowing whether it’s the medication affecting my mood or the world around me will make it easier to take and therefore help myself feel better.
So I thought I’d do a little review of Phenelzine as a goodbye.
I started taking Phenelzine in the summer of 2014, after meeting my current psychiatrist. I’d taken various medications before (I’ll write about those at some point), all of which I’d had bad experiences with. So my Psychiatrist suggested Phenelzine, a drug not commonly used (in the UK at least) because of the dietary restrictions but one used when the other options haven’t worked. I’d never tried an MAOI (a monoamine oxidase inhibitor, one type of antidepressant) so I was optimistic that I would react differently than I had to SSRIs (selective serotonin reuptake inhibitors, another type of antidepressant). And I really did.
Almost straight away, I felt completely different. I had previously been almost unable to get out of bed, let alone do anything else, and suddenly I had more energy than I knew what to do with. My thoughts were like fireworks going off one after another after another after another. It’s the closest to mania I’ve ever experienced and my family were genuinely worried about me. I could barely sit still and I couldn’t shut up. I’m not kidding, I couldn’t stop talking and that was pretty embarrassing as I was just starting university. It was a bit scary but at the same time, I was absolutely ecstatic to be feeling so much better.
It took a bit of messing around with the dose (with my Psychiatrist’s supervision) but that did calm down. After a couple of months, I felt a bit more normal: I had more energy, I could concentrate and complete tasks, and my anxiety wasn’t as overwhelming as it had been. On a lower dose, I wasn’t so manic but I could still function a lot better than I could before. My almost perfect attendance in my first semester at uni is a testament to how much it helped.
Since then, with the exception of the last few months, it’s been a massive help to me. I’ve managed to complete my degree and graduate with a First, while commuting up and down to London. I mean, it was freaking exhausting but it would have been impossible without the Phenelzine. As I said, before I started taking it, I could barely get out of bed. The exhaustion that I experience with Depression is awful and I didn’t have the energy to walk my dog around the block. So Phenelzine was a godsend.
Side effects wise, there was only one that I struggled with (although I was initially a bit light headed and nauseous but that passed pretty quickly). My main battle was with the insomnia the Phenelzine caused. It’s has an alerting affect so it’s not that surprising that I had trouble sleeping. I struggled to get to sleep and when I finally did, I never slept more than four hours a night. It was exhausting. On multiple occasions, I fell asleep on the sofas at uni during my breaks and I’m pretty sure I fell asleep during a lesson once or twice: I have a very vivid memory of ‘blinking’ and finding the white board covered in writing…
This has been an ongoing difficulty. I ended up going back to the psychiatrist and left with a prescription for Quetiapine. I still have to take it every night to get to sleep and while I’m definitely grateful for that sleep, it also has it’s own downsides. It’s incredibly difficult to wake up; it feels like my eyes are glued shut, like I’m swimming through deep, dark water with no idea where the surface is and it can take hours to shake off the drowsiness. And it’s scary to feel like you will not sleep without it. I’m hopeful that, when I stop taking the Phenelzine, the insomnia will disappear and so I can stop taking the Quetiapine. That’s both exciting and scary. I haven’t slept unaided in almost three years; I’m going to have to learn how to do that again.
It’s going to take a little while to wean myself off Phenelzine and I have no idea how the new medication will affect me. So the next few weeks are going to be interesting.
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.