Posted on May 29, 2021
Trigger Warning: frequent mentions of self harm, suicidal thoughts, and suicidal behaviour. If this is something that you will find triggering or upsetting, please don’t read ahead. Please always put your mental health first.
Given that it’s Borderline Personality Disorder (BPD) Awareness Month, I felt I should write at least one post about BPD, although one is all I have time for at the moment, what with my uni workload. This is one of the videos I watched pretty early on after my BPD diagnosis and it really, really helped me. It’s such a good, informative video, completely free of the stigma that is often attached to this diagnosis.
I really recommend watching the whole thing but I want to talk about some of the points Claudia makes, as well as adding some of my own thoughts.
Borderline Personality Disorder (also known as Emotionally Unstable Personality Disorder) is a type of personality disorder, a type of mental health problem where your attitudes, beliefs, and behaviours cause you longstanding problems in your life, that impact your life daily. Struggling with how you think and feel about yourself and others – and that causing problems in your life – can lead to an investigation into whether you might have BPD. Having said this, many clinicians are reluctant to diagnose it as there is such stigma attached to it, with many in the health sector seeing those diagnosed with BPD as ‘difficult’ and ‘attention seeking’ (x). Personally, I have been told on numerous occasions that I should consider abandoning the diagnosis to avoid negative assumptions from doctors, a suggestion I find deeply offensive and have ignored. It explains things about me that I can’t otherwise explain and I’m not going to give that up because of other people’s ignorance.
Considering how many misunderstandings and how much stigma there is around BPD, Claudia uses the framework of the diagnostic criteria, as detailed by the Mind website (as of 2016, although the diagnostic criteria listed has not changed), to describe the symptoms of BPD and how she experiences them.
Fear of Abandonment
I definitely relate to this. I’ve had several people abandon me, intentionally or not, and so I have serious anxiety about people leaving me.
I also relate to this, although my fear usually stems from feeling like a burden and that one day, the people in my life will feel like I’m just too much of a burden and walk away.
On Feeling Emotions Strongly
I most definitely have very strong emotions, sometimes overwhelmingly so.
This is very true for me too. My emotions tend to be at the extreme ends of the scale with very little middle ground.
It can be scary and as Claudia says, exhausting, to have such big emotions that ricochet around inside you, changing every time they collide with something. If that makes sense. When they’re so big and they change so quickly and dramatically that it’s like the ground is constantly rocking until your feet; nothing feels stable or reliable.
On Having Unstable Sense of Self
I really relate to this, to feeling empty, to feeling like I don’t truly know who I am. I know little things, that my favourite chocolate is milk chocolate and that thunderstorms make me feel alive. But the answers to the big questions about myself continue to elude me: Am I a good person or a selfish person? What do I really think about this issue or that issue? Am I actually good at the things I think I’m good at? What are my strengths? My weaknesses? It’s very confusing.
I can definitely understand taking the best of our favourite people or fictional characters and building an identity and personality using those traits. I’ve absolutely done it. When I was younger, I would accidentally take on the whole person with both the traits helpful and unhelpful to me; I’d end up making decisions that weren’t what I wanted at all but were what the person I was emulating would do, which got me into some complicated situations. But now that I’m older and I understand that this is something I do, sometimes unintentionally, I’m better able to use it to strengthen me, rather than completely change me.
On Finding It Hard to Make and Keep Stable Relationships
This definitely resonates with me. Romantic relationships scare the crap out of me. The only relationship I’d consider significant was late in my teens, before I had my diagnoses of BPD (as well as ASD, depression, anxiety, etc) and it ended very traumatically. While that will always be on the other person, I did really struggle throughout the time we knew each other, especially with the big emotions and fear of abandonment curtesy of the BPD, as well as the social difficulties of ASD. And with no explanation for why I operated that way, it was probably doomed from the start. Still, the other person didn’t need to be such a cruel, manipulative human being…
I really relate to what she says about relationships being complicated because of how much you care. I’ve been devastated by the ending of friendships, relationships, etc and that does make maintaining relationships of any type very stressful at times: the idea of saying or doing the wrong thing and that damaging the relationship irreparably (even relationships that, in theory, aren’t so fragile that one mistake would ruin them) is terrifying and that in itself can lead to making bad decisions, saying or doing things, etc that aren’t true to who you are, that could damage the relationship. If that makes any sense.
I also relate to what she says about not being great at continuous contact. For me at least, I think it’s about exhaustion: communication is so loaded and requires so much energy, social energy, emotional energy, etc. Sometimes it all just becomes too much and I have to retreat for a while to recover.
This is definitely a trait of mine. If you’re a friend once, you’re a friend forever (barring a serious falling out). It’s one of the things that I find very confusing in other people: when they don’t feel the same way about friendships. It just doesn’t make sense to me.
On Acting Impulsively
I don’t consider myself a particularly impulsive person. In fact, I’ve always been terrified of not being in control of myself or making thoughtless decision. That’s probably partly why I’m such an overthinker.
On Suicidal Thoughts and Self Harming Behaviour
I’ve been meaning to write a post about being passively suicidal for ages; I just haven’t had the time that I would want to dedicate to it, given how important it is. But I’ve definitely experienced this and continue to have phases of feeling this way, some that last for days and some that last for months.
The ‘no emotional skin’ leapt out at me immediately. I really relate to that. Sometimes everything is just so overwhelming and painful; it can all feel like just too much to cope with, to survive, to live a life that isn’t unbearably painful.
I’ve self harmed on and off since I was about thirteen. To be honest, I never really thought about it as self harm – not for a long time at least: I didn’t think of it as harm myself because that wasn’t the primary motivation for doing it. I did it (and sometimes still do it) when I got so overwhelmed, so full of feeling that I had to get it out of me. I didn’t know how I would survive if I didn’t do it; it was a coping mechanism, like a pressure valve that helped me regulate the intensity of my emotions. I’m obviously aware now that it is self harm but after much discussion with my therapist, we’re not worried about it on it’s own. If it’s a coping mechanism (and one that I use relatively rarely), then the best use of our time is working on helping me to regulate my emotions so I don’t need to do it rather than stop me from using the only coping mechanism I currently have.
Feeling Empty and Lonely A Lot of the Time
I can absolutely understand the feeling of emptiness; I relate to it a lot. Sometimes I wonder if the emotions in me and around me are just so big and so overwhelming that that part of my brain just shuts down to keep me from being constantly overwhelmed, to keep all the fuses in my brain from blowing. Maybe empty is safe. I don’t know. But ‘feeling empty’ is definitely something that resonates with me.
‘Everything is too much for me and yet it’s simultaneously never enough for me’ is a phrase that could sum up my relationship with my emotions. My emotions are so big that they’re overwhelming but they also don’t feel quite enough. I can’t really explain it; I don’t know if there are words for it. It’s so deeply emotional that I’m not sure it would translate. I guess it’s kind of like sucking in so much air you feel sick but none of it is actually getting to your lungs. Maybe? I think that’s the best analogy I’ve got. Right now, at least.
Getting Angry and Struggling to Control Anger
I don’t often get angry. I don’t think I ever even felt angry until I was twenty. I always just jumped straight to sad. So anger is a strange and confusing emotion for me. I only ever really let it out when in the midst of an autistic meltdown. As I’ve already talked about, I have a lot of fear around saying or doing the wrong thing and the chances of that happening, in the heat of an angry moment, make that a lot more likely to happen. Plus I really hate confrontation. I can do it but I hate it.
Paranoia, Psychotic Experiences, or Feeling Numb When Anxious
Fortunately, I’ve never experienced a psychotic episode and hopefully my mental health never reaches that point. They sound incredibly scary and I feel for anyone who has them.
I’ve definitely experienced periods of feeling like I’m not really here or like I’m really far away from everything and everyone, separated by something intangible but powerful. I’ve struggled to believe that I’m real and that the world is real. It’s confusing and difficult and lonely. I usually only experience it when I’m deeply depressed but it does appear on other occasions.
She talks about the stigma similarly to the way I described it at the top of this post but says that she wanted to share her experience with it in the hopes that it will help people and lessen that stigma. She also talks about the impact that her mental illness has had on her life: she’s studying for a degree at home because that’s the path most conducive to her mental health and that’s something she’s proud of because she’s still working to achieve the things she wants to achieve, even if she has to go about it in a less than traditional way.
“I really am working on structuring my life now; like how some people structure healthy eating in their lives and they think about what they’re gonna eat in their diet, I think about myself emotionally and giving myself time and all these kind of weird emotional things that I have to think about, like that. But yeah, having my diagnosis was a huge weight off my shoulders because it feels real and you feel very validated… And like I said, some people don’t like a diagnosis and that’s fine. That’s up to them but for me, it felt validating and I’m not ashamed of it. At all.”
Many of the things I’ve talked about personally are very much inline with Quiet BPD, a less well known presentation of the disorder – sometimes people don’t initially believe me when I say I have BPD because I don’t fit neatly into the classic presentation. I read about it before my diagnosis and after investigating it with my psychiatrist, it’s always been accepted that this is the form that my BPD takes. I really want to write a longer, more personal piece on BPD and on my experience of Quiet BPD but I just haven’t got the time at the moment, being in the home stretch of my Masters. It’s also something that I feel is so important to get right and I just haven’t felt like I’ve been in the right space to do it justice. But these days I do feel more confident in my experience and, maybe when the stress of the Masters is over, I’ll feel able to write that post.
Category: about me, anxiety, bpd, depression, diagnosis, emotions, favourites, identity, mental health, quotes, response, self harm, suicide, therapy, video Tagged: actuallyborderline, actuallybpd, borderline personality disorder, borderline personality disorder awareness month, bpd, bpd awareness month, claudia boleyn, emotionally unstable personality disorder, living with bpd, quiet borderline, quiet bpd, youtube video
Posted on September 12, 2020
Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…
I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.
By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.
In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.
Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?
The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…
I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, meltdowns, mental health, ocd, tips, university Tagged: actuallyautistic, actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, asd, assessment, autism, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, borderline personality disorder, bpd, coronavirus, covid-19, degree, depression, disability, disability stigma, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, gad, general anxiety disorder, invisible disability, invisible illness, lockdown 2020, masters degree, masters part time, mental health, mental illness, mental illness stigma, neurodiverse, neurodiversity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, part time, part time masters student, part time student, personal independence payment, pip, sfe, stigma, student finance england, tips, uni, university, university support
Posted on August 22, 2020
I’m not sure how I’ve written roughly two hundred blog posts and never told this story but I recently found the letters containing all the details and so I thought I’d finally tell it because it was a really important moment in my life.
I’d struggled with what obviously turned out to be Autism and the mental health issues that developed due to that going undiagnosed for years but I’d always been dismissed, told that “every teenager struggles.” But if that was true, I couldn’t figure out why everyone seemed to be coping so much better than me. It was awful and I just felt like I was failing and wrong and always slightly out of sync with everyone else. But if this was normal, then I was going to have to figure out how to live with it. Because apparently everyone else had.
As a teenager, I went to the Hay Festival in Hay-on-Wye, Wales a handful of times. It’s a really cool arts festival and I’ve heard (and met) some of my favourite authors there over the years. But my most significant memory is from when I heard Stephen Fry speaking about mental health. What he said changed my life. He talked about his experience with depressive episodes and suicidal ideation and equated the ups and downs of mental health to the weather:
“I’ve found that it’s of some help to think of one’s moods and feelings about the world as being similar to weather. Here are some obvious things about the weather: It’s real. You can’t change it by wishing it away. If it’s dark and rainy, it really is dark and rainy, and you can’t alter it. It might be dark and rainy for two weeks in a row. BUT it will be sunny one day. It isn’t under one’s control when the sun comes out, but come out it will. One day. It really is the same with one’s moods, I think. The wrong approach is to believe that they are illusions. Depression, anxiety, listlessness – these are all are real as the weather – AND EQUALLY NOT UNDER ONE’S CONTROL. Not one’s fault. BUT they will pass: really they will. In the same way that one really has to accept the weather, one has to accept how one feels about life sometimes, ‘Today is a really crap day,’ is a perfectly realistic approach. It’s all about finding a kind of mental umbrella. ‘Hey-ho, it’s raining inside; it isn’t my fault and there’s nothing I can do about it, but sit it out. But the sun may well come out tomorrow, and when it does I shall take full advantage.'”
(This isn’t the exact quote from the event but this is a metaphor he’s used multiple times and is very similar to what he said that day.)
Everything he was talking about made absolute sense to me; for the first time, someone was saying ‘this isn’t normal,’ ‘this isn’t something you should have to learn to live with,’ ‘this is something that can be helped.’ For the first time in my life, I felt like someone understood what I was going through. Some of the feelings and experiences he described were so similar to mine that it took my breath away. I walked out of the tent in a daze and as soon as we had a bit of privacy, I told my Mum everything.
After that, we went to see my GP and started steadily exploring the options that the NHS provided. Things really deteriorated and the search became much more urgent after I failed an exam (I talk about that in this post and this post) and we were forced to go private to get me the help I needed as fast as possible, before it got worse. If you’ve read the posts about me getting my various diagnoses, you’ll know that, after several years of talking to lots of different people, I ended up being diagnosed with Autism Spectrum Disorder, Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder, and Borderline Personality Disorder.
And on and off during that time, I thought about that Stephen Fry talk and what he’d said and how everything might’ve turned out differently if not for that moment. So, not long after I got my diagnoses, I wrote to him. I wanted to thank him for his part in my journey. I didn’t know if he’d get it but I wanted to try anyway.
To my utter surprise, he not only got it but a few months later, I got a response. I don’t feel comfortable sharing it because he wrote it only for me and to circulate it feels like a breach of trust. I don’t know if that’s how he’d feel but that’s how it feels to me. But he was warm and kind and generous with his words and I’m so, so grateful. I’ve often returned to it in times of difficulty and it’s helped me pick myself up again and again. This letter is a deeply cherished possession, a gift I never in a million years thought I’d receive.
Category: about me, diagnosis, emotions, event, mental health, quotes, suicide Tagged: actuallyautistic, actuallyborderline, anxiety, asd, autism, autism spectrum disorder, autistic, borderline personality disorder, bpd, depression, hay festival, letter, memory, mental illness, obsessive compulsive disorder, ocd, reply, social anxiety, stephen fry, story, storytime, suicidal ideation, thank you, turning point
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.