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
Posted on March 16, 2019
I haven’t written much about my diagnosis of Borderline Personality Disorder, even though it’s a diagnosis that means a lot to me. It was hard fought: when my psychiatrist didn’t believe me, I presented him with all the research I could find to prove to him that it was at least worth considering. He both apologised and admitted that he was wrong, and it wasn’t long before he bestowed the diagnosis upon me. It was confirmed later that year when I got my Autism diagnosis.
The name Borderline Personality Disorder is not a clear one. People assume that there’s something wrong with your personality or that you only just have a personality disorder. Both of these assumptions are incorrect. The word ‘personality’ in personality disorder refers to the patterns of thoughts, feelings, and behaviours that are individual to each of us and the word ‘borderline’ relates back to early uses of the label, when it was thought to be a condition ‘on the borderline’ between neurosis and psychosis. Even though that has since been disproven, the name hasn’t changed although that is a popular idea. Suggestions include ‘Emotional Intensity Disorder’ and ‘Emotional Regulation Disorder.’
The symptoms include:
I related to a lot of this: the intense emotions, the fear of abandonment, the shifting sense of self. But on the other hand I’m too anxious to be impulsive or get angry with someone. There were enough connections to keep investigating though and that’s when I discovered the quiet presentation of BPD. Where the classic presentation lashes outward, quiet borderlines internalise, blaming or harming themselves. Their fear of abandonment can make them people pleasers and they struggle with feelings of isolation and loneliness, at a higher risk of depression than the classic borderlines. This discovery changed everything; I related to almost every experience I read and that gave me the confidence to pursue it as a diagnosis.
Despite the considerable stigma around BPD, I’ve had a really good relationship with my diagnosis. After so much anxiety and uncertainty, it was empowering to have a name for my struggles and it allowed me to get the support I needed. I’m aware of how lucky I am to have found the right people but that wouldn’t have been possible without the diagnosis.
Having said all of this, my diagnosis has been causing me a lot of anxiety of late. At the end of a session, my psychiatrist made what was probably, to him, an offhand comment about my collective diagnoses, that I might not need the BPD label anymore. I was too overwhelmed by a torrent of emotion to respond before the session was over – even a short session can take me days to process – but then the anxiety began to sink in. The idea of losing it – this necessary, hard fought piece of my identity – was terrifying. Is terrifying. This label explains a big part of my daily struggles and revoking it would be so invalidating, like saying that it isn’t happening, like my difficulties aren’t significant enough to even earn themselves a name. That thought of that happening is devastating.
The symptoms still feel very present to me. I feel things so intensely; they’re like physical forces acting on me. If I’m happy, sunlight is bursting out of me; if I’m sad, my ribcage is collapsing and I can barely breathe for the pain; if I’m angry, I feel like it’s strong enough to bring down buildings. They crash over me like waves and I’m overwhelmed by this panic to get back to the surface. It’s very stressful. I read somewhere that people with BPD are constantly in crisis and I definitely relate to that. Every emotion flares with life or death situation strength and it happens over and over again. They can swing so violently that it makes me physically sick and it can feel like there’s no solid ground to stand on. It’s exhausting. I also feel the emotions of other people, particularly sadness or pain, and it can take hours or days to recover from them.
“Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.” – Marsha Linehan
“One of the biggest things about self harm is the release you get from doing it. My emotions get so strong sometimes that I feel like there isn’t space for anything else in my body, in my brain. There isn’t the space for my lungs to expand; I can’t breathe. It almost feels like the emotion is crushing me and the only way to survive is to open up my skin so that it can escape. It’s like a pressure valve. Once I’ve done it, I feel like everything stabilises and I can think more clearly. If there’s a problem, I can deal with it and if there isn’t and it’s just an overload of emotion, I can take care of myself a little better than I could if I hadn’t.” (x)
Another example of overwhelming emotions…
The fear of abandonment is ever-present, willing or unwilling. The thought of it causes me to spiral into panic so intense that I’m unable to function. Indefinitely. I’m always running, running away from this black hole that’s trying to pull me in. Past abandonments have left me unable to talk or eat or do anything for weeks and it’s taken years to recover from them fully.
I struggle with a deep feeling of emptiness and I sometimes feel like my soul is empty, which feeds into the feeling of having no idea who I am. I feel like I have no real sense of self that’s mine: who I am seems to change according to who I’m with. I take on the traits of others, becoming loud and joke-y with one person and quiet and introspective with another. I don’t know what is actually me. I know small things, like ‘I like flowers with symmetrical petals’ and ‘comedies make me strangely sad’ but I don’t know the big things, like whether I’m a good person or a reliable person or an extraordinary person. If anything, I feel like a child, like I’m stuck as a child while all my friends turn into adults. I can’t cope on my own or look after myself reliably. I feel so intensely sensitive, like I’m too vulnerable for the world I live in and I get too overwhelmed to function properly.
To take this diagnosis away would be to say that this is normal, that I have to just live with it, regardless of the pain it causes me. To take this diagnosis away is to say that I don’t need support and that I should just ‘get on with it.’ That is so invalidating and so upsetting that just writing it brings tears to my eyes. That is why this diagnosis is so important to me and why taking it away would be so traumatic.
All of this is very scary to put out into the world but I feel like the only way to make progress and move forward is to put it all out there and be honest. It’s almost painful, like removing armour that I’ve been wearing so long that it’s fused to my skin and I’m peeling it off with my fingernails. But it feels like the right move. Maybe, in doing this, I’ll start to see change.
“People with BPD are doing the best they can, and they still have to change.” – Marsha Linehan
Category: about me, anxiety, depression, emotions, identity, mental health, quotes, self harm Tagged: actuallyborderline, actuallybpd, borderline, borderline personality disorder, bpd, emotional intensity disorder, emotional regulation disorder, emotionally unstable personality disorder, eupd
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) 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.
I’m currently releasing my first EP, Honest, track by track and the first three songs are available on all major platforms.