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 August 4, 2018
Within an hour or so of waking up, I knew I needed a self care day.
I’d started the day at the gym, swimming in the outdoor pool. It felt good to do but by the time I got out, I was feeling really anxious and fragile. I thought about it and talked to my Mum and decided that I needed a day to look after myself. I needed a little break from life, from all the big, hard stuff.
It was never going to be a particularly busy day. I had planned to do a couple of things in town but there was nothing urgent and I felt really low on social energy. Sometimes it’s worth pushing through, worth practicing opposite action, but sometimes it just makes more sense to focus your energies elsewhere. So I cancelled that stuff and headed home.
On my way, I popped into the supermarket and bought some treats for myself. I’ve been pretty good about eating healthily recently, which I’m really proud of given my issues with food. But we all need unhealthy stuff sometimes and that day was one of those days. I also bought some new notebooks, which always cheers me up.
Once I was home, I headed to the living room and drew the curtains. I’ve never had white curtains before but I absolutely love it: you can draw the curtains and shut out the world but there’s still good natural light. It’s a little bubble in which I feel safe. I changed into my favourite T-shirt, put on a Harry Potter film for background noise, and got to work on the emails I’ve been avoiding. I was avoiding them because they were stressful but ignoring them only created more stress so I needed to address that. I just needed the right environment – a calm environment – to feel able to do that. And I felt SO much better afterwards. I also got caught up with my diary and my photo albums, both of which are my self care staples.
Another thing I was really worried about was my cat. She was spayed not that long ago and I just had this anxiety that the wound wasn’t healing properly. My Mum was taking our dog to the vet so I asked her to take Lucy with her. I have serious anxiety about going to the vet (probably from when we had to have my previous cat put down) which does need addressing but that wasn’t going to happen in a day and I didn’t want Lucy to suffer because of it. The vet checked her out and gave her a clean bill of health, much to my relief.
It’s also a really good time to try and practice good habits, healthy habits. I’m trying to build several things into my daily routine (not that I really have a daily routine), including drinking the recommended amount of water, practicing my instruments, and making sure I do something creative. Without a day to stop and take stock of my life, it’s easy to get into a really frenetic cycle that just gets faster and faster until I inevitably crash. So, for me, it’s important to stop.
So there you have it. This is what I do in a self care day. Obviously it’s different each time because of what’s happening in my life but, for me, a self care day involves several things:
Sometimes that means curling up in bed with my cats and my favourite TV show and sometimes it’s replying to all my emails and so on that have built up. Sometimes it’s like an aesthetic instagram post with fluffy socks and candles and sometimes it’s ugly with tears and frustration. We all do it differently and we all do it differently each time. Self care is a very small title for a very big idea.
Posted on July 18, 2018
Not long ago, I read an article in the Guardian Magazine and I really wanted to share it with you guys. Hannah Jane Parkinson writes about her experience with mental illness, the conversation around mental health, and how we can make real change happen. She doesn’t pull any punches, which can make it hard to read, but that’s exactly why it needs to be out there because even though we are making progress around mental health, there’s still a long way to go. And that’s what this article is about. I really recommend reading the whole thing (you can find it here) because I just cannot do it justice without posting the entire article.
The whole article is important but here are some of the most important points:
“We should normalise the importance of good mental health and wellbeing, of course. Normalise how important it is to look after oneself – eat well, socialise, exercise – and how beneficial it can and should be to talk and ask for help. But don’t conflate poor mental health with mental illness, even if one can lead to the other. One can have a mental illness and good mental health, and vice versa.”
A very important point as it’s so easy to blur the two together.
“Like the rest of the population, I instinctively love the NHS, from the junior doctors to the consultants to the community psychiatric nurses. But, really, if you asked me right now? I hate the NHS. I hate the thin film of skin on its bones. It is incompetent and ailing. I used to blame the system. Mostly it is the system: those never-ending cuts and closures; the bureaucracy; the constant snafus of communication; the government’s contempt for staff.”
This is such an important issue to talk about. I feel exactly the same way. I love the NHS and I’m so grateful that it exists: it has literally saved the lives of several of my friends. I would fight to the death for it. But when it comes to mental health and mental illness, it’s incredibly lacking. I saw so many people who either couldn’t help me because of how the system works or wouldn’t help me because they didn’t understand, or even know of, what I was struggling with. And I know many people who’ve had the same experience. It’s a really upsetting, difficult situation and there’s no simple solution.
“The truth is: enough awareness has been raised. We – the public, the health professionals, the politicians – need to make our words and actions count for more. First, the Conversation needs to be more inclusive when it comes to rarer conditions, and to people whose voices are less loud. Second, we need to recognise that posting “stars can’t shine without darkness” on social media might piss someone off in the midst of desperation and that, actually, anxiety can be a normal reaction and is different from general anxiety disorder, a serious condition. That feeling down is not the same as depression.
Then, action. Donate to Mind; volunteer as a Samaritan. Vote for politicians who aren’t going to decimate our National Health Service or who support policies that lead to greater incidences of mental health problems (because it’s not just physical; society and environment plays its part).
What does the government need to do? Hire more staff, and then more. Enough staff to provide a service that meets individual needs. That means better working conditions and pay, and not piling all funding into a single type of therapy or care path. Clinical commissioning groups need to spend money earmarked for mental health on mental health. Prescription charges for long-term conditions should be reviewed. Funding and research must be increased.”
One of the things that, I think, sets this article apart from others I’ve read is that it includes concrete steps that we can all take. So often, articles talk a whole lot about how we need to create change but then they finish without actually telling us how to do it. I finished reading this article and felt empowered, like I could actually make a difference when, usually, the situation makes you (or, at least, it makes me) feel overwhelmed and hopeless.
These are some of the big points made in the article. But as I said, go and read the whole thing. It’s a really important piece of writing.
It’s taken me a really long time to write this out because the article talks about issues that make me really emotional and because there are so many quotes that I could pull out and talk about. While our experiences of mental illness are very different, there were so many things in this piece that I related to, this one maybe most of all:
“So I am a newspaper journalist – for now. But I don’t know how long for because the illness might grip itself around me so tightly that it cuts off everything I love and hold dear, and my ability to lead a normal life.”
Thank you, Hannah Jane Parkinson, for writing such an important, moving piece.
Category: mental health, response Tagged: hannah jane parkinson, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health in the media, mental illness, mental illness awareness, national health service, nhs, response, the guardian, the guardian magazine
Posted on July 14, 2018
At the beginning of the year, I set myself a handful of goals for 2018 and as we’ve just hit July, I thought it might be wise to have another look at them to see how or whether I’m achieving them. There’s been a lot of hard stuff so far, which has pretty much dominated my life so I’m not super optimistic about my progress but let’s have a look…
WRITE MORE SONGS
Technically I have done some writing so I have achieved this but I feel like I’ve achieved it in the worst way possible. I’ve been struggling so much with my concentration, my motivation, and my general cognitive ability that writing has been gruelling at best. Throw in the recent period of struggling to actually put sentences together and you can imagine that I haven’t been getting very far. It’s hard to feel good about the songs I did manage to write too. So, all in all, it’s been a bit of a mess, but I’m cautiously (VERY cautiously) optimistic about this new medication. At the very least, coming off the Venlafaxine has allowed my brain to start functioning again. It’s overwhelming at times – it feels like a firework display in my head and I’m desperately trying to look at everything before it disappears – but it’s a thousand percent better than the alternative.
Yes! Yes, yes, yes! Invisible is out! My very first single is out in the world. It’s been very surreal and weird and I thought I’d feel less stressed once I had music out in the world, but nope. Even more stressed. Anyway, I did it. I (with the help of some very awesome people) jumped the first hurdle. That’s a big deal. Now, on to the next hurdle.
FIND THE RIGHT MEDICATION
Well, I found a lot of wrong ones. That’s all I’m sure of right now. Hopefully the new one will be the right one.
BECOME MORE INDEPENDENT
This is a tricky one because I’ve been mentally (and so physically as well) worse than I have been in a really long time. So it’s not really been the right time to try and be more independent; I’ve had a hard enough time being functional at all. But having said that, there have been a few things of note. I have been slightly more adventurous with food: I’ve been trying new things, which has always been a struggle for me, so that’s progress. I also discovered the Deliveroo app (I know, I’m way behind the times), which has helped me to be less dependent on other people. I’m not sure it’s exactly the same thing as being more independent but again, it’s progress. And finally, I found an app that makes sorting cabs easier. I have been so desperately low on energy recently that I’ve been relying on my Mum and her car so having that app has made things a bit easier.
WORK ON BEING HEALTHIER
Who knows with this one… When I was taking Phenelzine (and eating badly at university), I gained a lot of weight, all of which and more I’ve lost over the last nine months or so. That, I think, has mainly been due to the nausea I’ve been experiencing as a side effect from various medications, as well as my depression affecting my appetite and will to eat. I’m aware that that’s not the healthiest way to do it but it is what it is. I wanted to get back into a rhythm at the gym and do more swimming but I just haven’t been able to; I haven’t had the energy and I haven’t felt up to being surrounded by noise and people and life. Honestly, I have no idea how this one is going to for the rest of the year. I’ve spent the last six months or so in survival mode, trying to make myself eat the bare minimum, so motivating myself to be healthier hasn’t even felt possible.
READ MORE BOOKS (MORE THAN FIVE)
I feel quite good about this one. Although I’ve really struggled with my concentration and motivation over the last six months, I have rediscovered how much I love reading, which is so, so nice. I’ve read six books so far (what?!) and now that my brain feels a bit clearer, I’m really looking forward to reading more. I even have a list!
IMPROVE MY MUSICAL SKILLS
I have made zero progress on this one. I have just been too unwell to do anything about it. Plus, after the house move, I no longer have a piano, which obviously makes practicing the piano harder…
GO THROUGH MY POSSESSIONS
As I said when I set this one, I was in the process of moving house so I was going to be forced to do this and I was. I donated at least a third of my clothes to charity, quite possibly more, and threw out a fair amount that was practically worn out. I’ve bought my own desk (the one I had was borrowed), and replaced my bed: I HATED (and had hated for a long time) the one I had and the new one is much more practical with drawers underneath for storage. So I’ve definitely achieved this one and there’s more to go: there isn’t enough space for all my stuff in my new room. Throwing away things that I’m emotionally attached to (or have been in the past) is really hard for me so it’s been a big deal but I’ve done well so far and feel good about it going forward.
So, overall, I think I could’ve done worse and, of course, there are still six months left of the year. That’s plenty of time.
Category: book, depression, food, medication, mental health, music, treatment Tagged: actuallyautistic, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, books, depression, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, mental illness awareness, moving house, reading, singersongwriter, songwriter, songwriting
Posted on July 1, 2018
So, I was having a particularly difficult day and I found myself online, reading articles about depression and looking for insight. I even found myself googling ‘reasons to keep going,’ not in a suicidal way but because I was in the midst of all these overwhelmingly huge, complicated, and awful feelings and I felt like I needed some clarity, a straight answer to a very big question. You probably won’t be surprised to know that I didn’t find one but I realised that I was essentially searching the title of the book that was sitting on my bedside table: Reasons To Stay Alive by Matt Haig. I’ve had it on my to-read list for months but I haven’t had the concentration or motivation to actually read for about a year. Maybe I was finally desperate enough that I was able to push through that. Maybe it was influenced by my recent change in medication. Who knows. We don’t live in a vacuum. Everything affects everything.
I have to admit that I have very mixed feelings about this book. There was so much hype around it and everyone I know who’s read it has recommended it to me. I expected to love it but like most things in life, it wasn’t that simple. If you’re reading this and thinking, “Oh god, she’s going to criticise the crap out of this and I don’t wanna know,” please give me a chance and hang in there a little bit longer. These are just my thoughts, good and bad and different. Hopefully I’ll have something useful to add to the discussion around the book.
The first thing is that I love Matt Haig’s writing. I find it easy and natural to read but also powerful and evocative. And there were parts that made me laugh; I found the continuing comparisons to having various body parts on fire very amusing. He’s a very engaging writer. I like the way he talks about depression, frank but empathetic. Here are some of my favourite quotes from the book:
I think that descriptions like these would be particularly helpful to those who haven’t actually experienced depression but are trying to understand what it’s like for someone they know or someone they love.
And in a similar vein, I think he describes the seriousness of depression incredibly well: “Depression is a disease so bad that people are killing themselves because of it in a way they do not kill themselves with any other disease.” We all talk a lot about how serious depression is but it’s not often that someone can so succinctly get the message across.
This, I think, is my favourite quote from the book:
“Most of the time we do not feel the near-infinite nature of our physical selves. We simplify by thinking about ourselves in terms of our larger pieces. Arms, legs, feet, hands, torso, head. flesh, bones. A similar thing happens with our minds. In order to cope with living, they simplify themselves. They concentrate on one thing at a time. But depression is a kind of quantum physics of thought and emotion. It reveals what is normally hidden. It unravels you, and everything you have known. It turns out that we are not only made of the universe, of ‘star-stuff’ to borrow Carl Sagan’s phrase, but we are as vast and complicated as it too. The evolutionary psychologists might be right. We humans might have evolved too far. The price for being intelligent enough to be the first species to be fully aware of the cosmos might just be a capacity to feel a whole universe’s worth of darkness.”
I’ve described depression as having a black whole in my chest and this quote reminds me of that. When I’m deeply depressed, it feels like ‘a whole universe’s worth of darkness.’ It does. It’s that strong and overwhelming.
I also like the format of the book. Having not done much reading (because depression – and quite possibly my medication – dulled all the parts of me that made reading a book possible or enjoyable), reading a whole book was a very daunting challenge so having short, succinct chapters made it feel much more possible. It may well be a good analogy for how we tackle depression: trying to fight it as a huge, indistinct is such a difficult, exhausting task. Breaking it down into manageable steps seems like a better idea.
Now, onto the more difficult stuff. I have to say, I found the book pretty upsetting. There were several major differences in our experiences of depression and while I know, of course, that this is his experience of depression only that he’s writing about (which is absolutely his right), I ended up feeling like we have struggled with entirely different illnesses. That, I think, made it much harder to connect to the book. I mean, I’ve just talked about how much I liked his descriptions of depression and I do but while we have both really FELT depression, our actual experiences and the circumstances around having depression are completely different. I don’t think I’m explaining this very well. Let me give you the analogy of dog breeds: they’re all essentially dogs – they all have dog DNA – but they appear in hundreds of different ways. That’s how this feels to me. We’ve both had the DNA of depression, but where his is bulldog, mine is a German Shephard (I’m not gonna lie – trying to find two different breeds of dog that are very different without belittling either of our experiences by comparing one of them to a dachshund or a Chihuahua was a challenge).
The biggest thing for me was that I felt like there was this inherent implication that, after being depressed, you will never be that low again. Because you lived through it, because you survived it, or whatever, that you have this new perspective on the world that will somehow protect you from depression. It’s a belief that many people have but for me that is just not true. Each time I think I’ve reached the lowest point I can possibly survive, there’s always more. There’s always worse.
On a similar theme, he references another common idea, that feeling the good stuff is worth feeling the bad stuff: “You know, before the age of twenty four I hadn’t known how bad things could feel, but I hadn’t realised how good they could feel either. That shell might be protecting you, but it’s also stopping you feeling the full force of that good stuff.” Let’s say that’s true. What does that matter if the bad to the good have odds like 364 to 1? Is it worth it? I’m not sure. In my experience, the bad stuff is so much more devastating than the good is good. I’m not attributing this idea to Matt specifically but I feel like it’s worth commenting on. This idea equates the strength of good and bad emotions (something that is practically impossible), and suggests that it’s acceptable (and even expected) to feel really terrible, simply because you’ve had some good moments. I’m just really wary of anything that justifies struggle and trauma.
About halfway through the book, he talks about how he overcame his separation anxiety when his partner needed him to, because she had to go to the hospital with her sick mother and someone had to be at the house. I found that really hard to read, because a lot of the time, for a lot of people, that’s not the case. For me, that’s not the case. Anxiety, depression, mental illness… they don’t go away just because you need them to. I wish they did and, if I’m honest, it just made me feel more pathetic. I can’t help thinking that it would’ve been more helpful if he’d mentioned some of the times it hadn’t been like that and then said something like, “I don’t know why it was different this time.” Just to represent that problem, to give it context. I mean, I’m making an assumption that there were moments where he couldn’t overcome his anxieties but I think it’s pretty safe to say of anyone who’s struggled with severe anxiety for an extended period of time.
The chapter ends with, “needless to say, they came back,” in reference to his paralyzing anxiety that something would happen to his partner and her parents while not in his sight. This is something that I struggle with on a daily basis but my fears not coming true hasn’t ever dulled those fears. Instead I feel like my time – my run of good luck – is running out. You can only throw heads so many times, you can only be lucky so many times before the inevitable bad thing happens. In my experience, anxiety isn’t rational and can’t be managed as if it is.
He goes on to say, “I had reasons to force myself to be strong…” which, I have to say, irritated me. We know that depression and anxiety and so on are illnesses and are therefore out of our control. It’s not logical. You can’t reason with it or simply will yourself out of it. In my experience, my reasons keep me going for a while, get me through what I need to get through, but then I crash, often lower than before. It’s great and important that he found that motivation and I don’t want to take away from that I just don’t think it’s as straightforward as that.
“…To put myself in situations I wouldn’t have put myself in. You need to be uncomfortable.” I hear this expression all the time and I HATE it. I hate it enough to put the word hate in capital letters. I am ALWAYS uncomfortable. I cannot remember the last time I was comfortable in anyway, whether it be emotionally, mentally, or physically. Maybe my ASD makes it impossible to be comfortable. Maybe there’s another explanation. So, how does that fit into this formula? I don’t know the answer. And what if there’s no good in it, no purpose? What if that’s all there is? I don’t know the answers to those questions either.
“People often use the word ‘despite’ in the context of mental illness. So-and-so did such-and-such despite having depression/anxiety/OCD/agoraphobia/what-ever. But sometimes that ‘despite’ should be a ‘because.’ For instance, I write because of depression.” I don’t disagree but I’d like to propose an addition: and. So-and-so did such-and-such and they have depression/anxiety/OCD/agora-phobia/whatever. I have struggled with identity stuff for a long time – probably from my BPD and the late diagnosis of ASD (which obviously does affect everything I do as it is something I was born with) – but I’d like to think that I am not who I am solely because of my mental illnesses. A lot of people say that their experiences with mental illness have made them kinder, more compassionate and thoughtful people and that’s amazing but I don’t think they give themselves enough credit. Everything we become we were always capable of becoming and the circumstances and coincidences that start those chain reactions shouldn’t get all the glory.
Despite the parts of the book that I struggled with, there were parts that really spoke to me. There were several quotes that I related to so strongly that my chest physically hurt when I read them:
Ultimately I have mixed feelings about this book. I can see why people love it and why people find it helpful. And I think, had this been my first experience of depression, it would’ve helped me too. I would’ve found it inspiring. But I struggled to connect with it and I found that very upsetting. Maybe it’s my fault for reading it when I did; maybe I was too depressed for anything to help. Maybe, if I’d read it when I wasn’t feeling so completely hopeless, I would’ve had a different experience. Maybe I would’ve felt the differences less and the similarities more. I’ll never know. But regardless, I’m really glad that it’s helped people. Having your struggles and your experiences validated can change everything. As Matt says in the book: “There is nothing lonelier in the world than being surrounded by a load of people on a different wavelength.” That, right there, is why I write this blog.
I hope this was interesting and I hope I’ve managed to represent my emotions about the book (reading it was a very emotional experience), rather than blindly praising it or bluntly criticising it. Despite struggling with the book, I love Matt Haig’s writing and he is one of my favourite people to follow on social media; I have great respect for him. I’m really looking forward to hearing him speak on Tuesday and to reading Notes on a Nervous Planet when it comes out.
Posted on June 30, 2018
I have now been clinically depressed for thirteen months. I’ve been living with depression a lot longer than that but, in May of last year, everything spiralled and I was diagnosed with clinical depression for the second time. So I know my depression pretty well now and there are a few differences between those two states. One is the presence of hope: while living with depression, it’s a constant battle between my depression and the hope that things will change and get better. But sometimes that hope just disappears and the depression takes over. That’s when things start to get really bad. Another difference is the ability to cope; when my depression is particularly bad, I feel completely overwhelmed on a daily basis and devastated on a weekly one. I feel like one more impact and I’ll never recover.
I’ve been in what feels like the lowest place I’ve ever been for the past month. I wish I could describe it but I don’t know if I can; I don’t know if there are words that accurately capture that feeling. It’s like that feeling after you’ve had blood taken, after they’ve pulled the needle out, and your arm hurts in a way you’ve never really felt before but it’s everywhere. It’s like you’re drowning inside your own body. It’s like having a black hole in your chest that’s sucking everything in, leaving you aching and empty. It’s like all of those things and none of them at the same time.
But recently there’s been a slight shift. It’s so slight that saying ‘I feel better,’ feels like a gross over exaggeration and fills me with anxiety. But it is there and that’s really frightening to me. I’ve spent weeks feeling like I’m suffocating, like I can’t possibly survive feeling like this for another minute, but now that that’s not the case, I’m honestly terrified. As miserable as the depression is, ‘better’ is unknown. And scary. As much as I wanted to feel anything else, being depressed is somehow safe and… comforting is the wrong word, but hopefully you know what I mean. It’s clear. I know where the edges are, how it feels. In some ways, being depressed is easier because it’s familiar. I know it sounds weird but it’s like nothing can hurt me because everything hurts already. So, if I step out of that, it opens me up to really feeling hurt again and that is really, really scary.
But what if I’m not ready? Being depressed takes up so much space within me. What if I’m not ready to process everything that I’d have to if that space wasn’t being monopolised by the depression, if it was being filled with more life than I’ve had up until now? That’s overwhelming. I feel so raw and so fragile. What if I’m not strong enough? What if something happens and suddenly I’m crashing down even lower than before? I’m not sure I could survive that. I feel like a fractured windowpane that will shatter if it takes one more hit.
I feel like a little like I’m being dragged into ‘better’ regardless of how I actually feel. I do feel better physically: the brain fog has receded significantly, I don’t feel so numb, to the world and my own emotions, and so on. I’ve even had flashes of future plans, like going to the gym and learning how to bake something new; I haven’t had thoughts like that in a long time. But despite all of that, I don’t feel better mentally so it’s confusing and overwhelming and stressful. I know that that kind of change takes time, conscious processing, and most likely therapy, but that’s hard to remember when I’m feeling so overwhelmed by anxiety.
And part of that anxiety is this suffocating feeling that something bad is about to happen. This is something I’ve struggled with for years (it’s on my list to write about) and although I know it’s completely irrational, it doesn’t feel that way when I’m in it. It feels completely logical. A good thing happened and so a bad thing must happen to balance it out. I dared to want more than I already had and so the universe must punish me for it. When I write it out, I can see how ridiculous it is but it’s how I FEEL. It’s like the instinct that you’re in danger: it’s that strong. You can’t just ignore it. I want to write more about this in the future because it’s important and complicated and distressing.
This is all really overwhelming and scary. And it’s really confusing to suddenly feel like I don’t want to get into a better space after desperately wanting it for so long. It’s really weird when your physical emotions and your mental emotions don’t match, if that makes any sense. I don’t really feel like I understand it so I end up feeling like I don’t want to tell other people because they might assume that it’s as simple as feeling better and therefore expect more from me, more than I’m capable or feel capable of giving. This is a learning curve and I seem to be moving through it very quickly but also very slowly. It’s a mess. I’m a mess. Thank you for sticking with me through this very ramble-y description of it.
Category: anxiety, depression, emotions, medication, mental health Tagged: anti depressants, antidepressants, anxiety, depressed, depression, fear, finding hope, hope, hopeless, hopelessness, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental health update, mental illness, mental illness awareness, recovery
Posted on June 27, 2018
A couple of months ago, I (with the help of my psychiatrist) decided that it was time to stop taking the Venlafaxine. I don’t feel like it’s helping; it just makes me numb to everything and, as overwhelming as my emotions tend to be, feeling is better than not feeling. It might not always feel like it but that’s the truth. Plus, the side effects are not worth it, even if it was helping: my concentration and motivation were pretty bad before I started taking it but I’m pretty sure it’s gotten worse, especially recently. Writing has been such a struggle, even the practice of it. My depression has always had a negative impact on my creativity but this is the first time I’ve found it so incredibly difficult to simply write at all: getting words out has been like pulling teeth.
So I had some good reasons for wanting to stop and I’d put in the time to make sure I had an informed perspective. So I discussed it with my psychiatrist and we decided that the right move was to wean myself off the Venlafaxine and try something new.
When I first reduced the dosage, I didn’t really feel the difference. I still felt both depressed and numb, which is a really weird combination. But over time that’s changed. Obviously I can’t know how much of that to attribute to the medication change or to life in general but I still think it’s worth keeping track and I recommend this practice to everyone: it allows you to see the trends in your life and analyse what does or doesn’t work for you.
Not long after lowering the dose, I started getting headaches. The pain was very similar to the pain of a migraine but I didn’t have any of the other symptoms that come with it. Normal painkillers didn’t seem to help much and there were several occasions where I just retreated to my bed and tried to sleep through it. I had one of those headaches almost everyday for about two weeks, which was horrible but they have now passed at least. So that’s progress.
Coming out of that, I felt really raw and emotional, which was very weird, having felt so blank for months. I felt like I had no control over my emotions, which was more than a little bit scary, and kept bursting into tears over the smallest things. It’s felt a bit like I’ve had all of my emotions bottled up since I started taking Venlafaxine and suddenly they were overflowing everywhere: if something upset me, I became inconsolable and if someone irritated me, I had the urge to scream at them. I feel very lucky and grateful that I’ve managed not to scream at anyone because that isn’t how I actually feel. Once that emotion has died down a bit and I’ve been able to process the whole experience, that’s how I really feel. I live in fear of saying something I don’t mean and it ruining everything. So far, I’ve managed to manage these emotional tidal waves. They’re still happening though, even now that I’ve stopped taking the Venlafaxine completely.
And more recently I’ve started to have moments where I can think more clearly. They don’t last very long and to begin with, they were so sporadic that I didn’t even connect them to coming off the medication. But now that there have been a handful of them, it seems pretty likely that the two are linked. These moments are amazing. The feeling reminds me a bit of coming up for air after being underwater for a long time. You breathe in and you can almost feel the freshly oxygenated blood rushing around your body; everything suddenly feels so easy and you’re shocked by how hard it was up until that moment. These moments aren’t lasting very long and I wish there were more of them but it’s something.
I realise that I’m not giving this progress the recognition it probably deserves but I’m really not in a place where I can be enthusiastic and optimistic; the most I can manage right now is one foot in front of the other. My depression is worse than ever but at least it’s real. And I’m doing the best I can. That has to be enough.
Category: depression, emotions, medication, treatment Tagged: brain fog, cognition, depression, medication, medication review, medication withdrawal, mental health, mental health awareness, mental health blog, mental health blogging, mental illness, mental illness awareness, venlafaxine, withdrawal
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.