Posted on May 29, 2022
I’d hoped to write and post more for Borderline Personality Awareness Month but between my depression and changing medications, I’ve been struggling to write; I’ve started a handful of posts but been unable to finish them. But, of the symptoms of BPD, my fears around abandonment have been particularly oppressive recently and so I’ve been thinking about that a lot. I thought I’d write done some of my thoughts; it’s the best I can do right now.
Fear of abandonment is a significant aspect of Borderline Personality Disorder and it’s something that I’ve personally struggled with for most of my life. I was diagnosed with BPD when I was twenty and the consensus was – and still is – that it was due to the difficult and frustrating process of being diagnosed with Autism Spectrum Disorder, where I was repeatedly ignored and invalidated by medical professionals when I expressed how much I was struggling. I guess those could be interpreted as abandonments. But I’d been abandoned in the more traditional sense multiple times before that, so the ‘foundation’ – I guess you could call it – for a fear of abandonment was already there (I’m not sure if it works like that but I noticed the pattern as I thought back): most of my friends stopped hanging out with me when I was eleven and then my one remaining friend moved abroad about a year later so I started secondary school with basically no friends; my Dad died suddenly when I was thirteen; and then, when I was nineteen, a very important figure in my life just cut me off without warning. Each one reinforced the fear and the fear just kept building exponentially. So I think it’s fair to say that I was well on my way to developing a complex about being abandoned by the time I was diagnosed with BPD.
It didn’t stop there – and there were a couple of painful ones – but, on the whole, life has been relatively stable until recently. Over the last few months though, I’ve been dealing with a lot of feelings of abandonment. Some of the actions that have caused these feelings were intentional, some not; some of these feelings are based in reality and some are based on anxiety. People who’d been consistent in my life for a long time left suddenly for work or family stuff, people not being who I thought they were, people drifting away… I don’t want to write about them specifically because the point of this is not to ‘name and shame’ – it’s just felt like one after another after another lately and it’s been really tough. And, again, I’m not trying to say that these people are deliberately, intentionally abandoning me; BPD has just made me particularly sensitive to situations that could be perceived as abandonments, especially when they seem to be happening a lot. Sometimes it’s on me for overthinking or overreacting, sometimes it’s on them for doing or not doing something, and sometimes nobody did anything but it still feels awful. We’re all human beings just doing our best (most of the time, at least). I guess the point I’m making here is that it’s a feature of BPD that I have to live with and have to navigate on a daily basis and this is a part of that.
I don’t think it’s a great leap to assume there’s a link to low self esteem. I find it hard to see why other people would want to be friends with me, which has only been exacerbated by all of my health problems: I feel like a burden (something I wrote about in this year’s MHAW post).
I remember seeing this on Instagram and relating to it to a painful degree…
Now I don’t even feel capable of being useful.
I feel like I’m always the one who can’t keep up, the one letting people down. I feel like, between me and my problems, I’m just too much for most people. Both too much and not enough at the same. And I can’t help but feel that if someone doesn’t think that yet, then it’s just a matter of time until they realise it. I know that these are my thoughts and not necessarily what other people think but it’s a hard thought pattern to shift; it’s pretty deeply ingrained at this point. It’s something I need to work on in therapy but I haven’t had access to therapy recently. Hopefully soon, although there’s a lot that’s happened over the last year that I need to work though.
I don’t know what I think about this post. I find writing about anything BPD related very difficult. It always feels much more personal and revealing to write about, compared to writing about Autism, for example. I’m not sure why. Maybe it’s because a lot of the symptoms of BPD correspond with issues that we’re conditioned to feel shame for and around: fear of abandonment can be portrayed as ‘clingy’ or ‘manipulative’; an unstable sense of self sounds scary to a casual ear; self-destructive behaviour can be interpreted as not wanting to be helped; and so on and so forth. Plus there’s a lot of stigma around BPD, even amongst the people who should really know better.
To learn more about BPD, you can find good information here and here, and here is a post I wrote about my experience with BPD in 2019. I hope this has been helpful or thought-provoking or something along those lines. I do want to write more about BPD because there needs to be more understanding around it as a disorder; it was just unfortunate that BPD Awareness Month – when I had planned to write a handful of posts about it – coincided with a period where writing felt really difficult. Combine that with a topic that I find hard to write about anyway and I’m kind of surprised that I even managed this, given how I’ve been feeling recently.
Category: about me, anxiety, bpd, diagnosis, emotions, mental health Tagged: abandonment, asd, autism, autism spectrum disorder, borderline personality disorder, borderline personality disorder awareness month, bpd, bpd awareness, bpd awareness month, fear of abandonment, quiet borderline, quiet borderline personality disorder, quiet bpd, self esteem, self worth, therapy
Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
Category: about me, autism, bpd, chronic fatigue, chronic pain, covid-19 pandemic, depression, emotions, family, heds, medication, mental health, therapy, treatment Tagged: abandonment, ableism, adhd, adhd inattentive type, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, borderline personality disorder, bpd, depressed, depression, disability, disabled, family, fear of abandonment, friends, isolated, isolation, ivebeenthere, life, loneliness, lonely, medical services, medical trauma, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2022, mentalhealthawarenessweek, milestones, multiple diagnoses, nhs, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, quiet borderline, quiet borderline personality disorder, the mental health foundation, trauma
Posted on April 2, 2022
Given that the theme for this day was only announced by the UN a week or so ago, this isn’t as prepared as I would’ve liked; I would’ve liked more time to work on it, to organise my thoughts on the topic. ‘Cause this week has just been chaos, both in reality and emotionally: I had to leave my cats at a cattery, pack for my trip to the US, fly to Boston, go to a concert there, and then fly to Nashville, where I’ve been super busy. And all of that has been very stressful. So it’s not ideal but I’ve done the best I could with the time and emotional energy I’ve had.
Given that the theme set by the UN this year is ‘inclusive quality education for all,’ I thought I’d write a bit about my experience in education as a young autistic woman. I wasn’t diagnosed until I was twenty so, while my years in school were obviously affected by my being autistic, we didn’t know that that was the cause.
During primary and secondary school, things were pretty okay. I loved learning so that was never the hard part for me. I was shy – painfully so (P.E. and drama classes were cause for weekly distress) – and I was exhausted by being in school but otherwise I think it was fairly normal. For the most part, I was a high achiever: I learned to read and write well very quickly; I was top of the class in most subjects (some of which I tried hard in but some of which I seemed naturally good at); I was in my school’s ‘gifted and talented’ stream for multiple subjects. I was left to myself a bit, I think; I guess there’s a logic to the idea that you don’t need to help a smart kid be smart but then, in the long run, said smart kid doesn’t learn how to learn, if that makes sense. I picked things up very quickly so no one ever really taught me how to study; once I got to the harder stuff, I started to struggle.
Things were fine until sixth form college, when that problem really kicked in. But still, I pushed through: I worked harder, I exhausted myself further. But I thought there was something wrong with me. I thought I was stupid, that I was missing something; it never occurred to me that something like ASD meant my brain processed information differently, that the combination of the undiagnosed ASD and my all-consuming attempts to keep up were having a detrimental affect on my physical and mental health, or that I wasn’t being supported as I should’ve been. I had individual teachers who were kind and understanding but the institution itself offered no support at all. By the time I was taking my A Levels, I was so burned out and worn down that I was right on the edge of a breakdown. I ended up taking a gap year between the end of sixth form and the beginning of the university as I tried to get a handle on my spiralling mental health.
I went to the same university for both my BA and my MA (although with a few years in between), mostly because it allowed me to pursue my greatest special interest (songwriting) and study it in depth. I was diagnosed with several mental health problems during my first year of the BA and then ASD between the first and second year, which was when my university became more open to supporting me (it is worth pointing out however that I had to fight for almost every step because they simply didn’t understand why I needed what I told them I needed). They had what was called a Student Support Agreement that was supposed to be sent to all of my tutors before classes started so that they knew the difficulties I struggled with and what sort of accommodations I might need but I’d often introduce myself to a tutor and they’d have no idea what I was talking about.
In general, most of my tutors tried to understand; they were as accommodating and supportive as the university would allow them to be. They wanted to know; they wanted to understand; they wanted to make things easier for me (obviously not easier than it was for everyone else but to put me on the same level as my peers so I wasn’t disadvantaged). And while, I don’t mind – and even at times enjoy – educating others on Autism, it took a lot of energy to have those conversations at the beginning of every semester, sometimes multiple times. (It’s also worth pointing out that having those conversations can be really enjoyable when the person wants to learn but it can be a totally different story when you’re having those conversation out of necessity and the person isn’t really engaged.) It wasn’t until the last semester of my Masters that I worked with a tutor who was neurodivergent herself and it was a completely new way of experiencing education; feeling so understood and accommodated was amazing and that was definitely reflected in my work.
But while the individuals were open, for the most part, I felt like the institution wasn’t particularly interested in my experience as a neurodivergent student. It’s a small school so there were never that many of us (or there weren’t when I last spoke to them about it) because there weren’t that many of us in general and I don’t think they saw us as worth investing in (as in, it wasn’t financially worthwhile to educate all of their tutors on Autism and other neurodevelopmental conditions for just a handful of students) despite the benefits it could have for all of the students and for the tutors themselves.
Having said that, when I started the Masters I was introduced to the person brought in to support students with Autism and ADHD. I was feeling really optimistic about going back to uni – that progress was being made – but I hadn’t even known her a month when her actions triggered the biggest meltdown I’d had to date in the middle of a busy London train station, which was a traumatic experience. After that, I never heard from her again and found out from someone else that she’d transferred me back to Student Services without her ever saying anything to me. And all of that was with her training and experience. So I didn’t have a lot of faith in their efforts after that. I’m still talking to them though and I hope that I can still help them make the university experience better for neurodivergent students. They could – and they should – be doing more. With so many neurodivergent students dropping out of university, more needs to be done and I think the starting point is teaching the teachers.
I think it’s worth pointing out that I am in a fairly privileged position: I’m from a white, middle class family with a good support system and I went to good schools throughout my time in education. I was also able to go to university and had support from home that allowed me to do that in the way that was best for me. I was (and am) very lucky. But despite all of that, education has been an incredibly distressing experience.
Ultimately, everyone in education needs to know more about Autism and other neurodevelopmental conditions; knowledge and understanding is the only way that the education experience is going to get better for neurodivergent students. All of these institutions have been built on ableist foundations and I don’t have the answers on how to fix that but I do know that, without the knowledge, nothing will ever change.
Category: about me, anxiety, autism, chronic fatigue, depression, diagnosis, mental health, response, school, university Tagged: accessibility, anxiety, asd, autism, autism acceptance, autism awareness, autism awareness day, autism spectrum disorder, autistic, autistic adult, autistic student, depression, education, inclusive education, inclusivity, mental health, mental illness, primary school, school, secondary school, sixth form, sixth form college, united nations, university, waaw, waaw 2022, world autism acceptance week, world autism acceptance week 2022, world autism awareness day, world autism awareness week
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.