Posted on May 9, 2021
Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.
So we’ve reached the last semester of the Master’s, with the big, final project that we’ve ultimately been working towards throughout this whole course. It’s a big deal, exciting and scary because – obviously – I want to do well and create a project that I’m proud of. But I am worried about my health, mental and physical, getting in the way and making it a difficult to both work hard and enjoy the process. So I thought, with all of this in mind, I’d write down where my head’s at and how I’m doing – I guess, so that I have a record of how I’m feeling right now, at the very beginning of the project.
At the moment, my biggest difficulties seem to be chronic fatigue and pain that are a result of my recently diagnosed Hypermobile Ehlers-Danlos Syndrome. I’m tired and sleepy all the time; some days, I can barely keep my eyes open during the day. While the physical tiredness is likely due to the hEDS, at least in part, we suspect the sleepiness is due to my antidepressant, Phenelzine. I want to switch to something else as soon as I can but mid-Master’s is not exactly a great time, given how long it generally takes for antidepressants to take effect and my track record of reacting badly to all but Phenelzine (so far, at least). So I’m having to just put up with that, with the dwindling help of Red Bull.
The pain has been really bad, particularly in my legs, arms, and back. For months, I’ve been taking painkillers daily but I feel like, over the last few weeks or so, it’s started to get slightly better. I’ve been doing the Occupational Therapy exercises for my wrists and hands and I’ve been able to start swimming again (yay!), both of which do cause pain of their own but it’s a very different pain and actually wears off pretty quickly while the hEDS pain tends to just get worse and worse unless I take painkillers. I’m getting better at figuring out where my limits are and stopping before I overdo it – most of the time. It’s hard but I do feel like I’m seeing progress.
My depression has been okay recently, much less of a problem than it has been in the past (she says while still on the ‘end’ of one, but I’ll get to that in a minute). I had one awful episode at the beginning of April, which did result in self harming. And then I had another episode last week, which I’m still feeling even if I’m not drowning in it anymore (it was kind of forced to the back burner by the worst migraine I’ve ever had). Both episodes were triggered by really upsetting news; they didn’t come out of nowhere like they sometimes do.
My anxiety has been a lot to deal with, but then there have been a lot of things to be anxious about: keeping up during the semester, the assessment and doing well in the module, all things COVID related (I’ve developed this weird house-separation-anxiety-like-thing whenever I’m out of the house too long, which is horrible), all of my health stuff, preparing for the new module and final project, trying to balance everything in my life, and so on. It’s exhausting and has a knock on effect; the rest of my mental health issues are all affected by my anxiety.
The two areas that are most tightly linked with my anxiety, I think, are my Trichotillomania and my OCD. My Trich hasn’t been too bad of late – not great but not unmanageable. But my OCD has been much more of a struggle lately than it sometimes is. I wrote about it in general here (so if you need a refresher on what my OCD is like, this is probably a useful read) but with everything going on recently, it seems to have kicked up a gear. I just can’t seem to do everything and then write all of it down; there aren’t enough hours in the day, which just leads me to getting more and more behind with everything, which just makes it worse and worse. Again, it’s just exhausting. I feel suffocated by it but I don’t know what to do about it; it feels like the walls are closing in around me and there’s nothing I can do to stop them.
As for autistic meltdowns, I haven’t had many of late. I think that’s because, despite my anxiety, I’ve had a really good few months. As I said in my previous post, this last university module and all the writing that came part and parcel with it was really good for me and I felt really good in myself so, in general, things didn’t build up to the point of meltdown. There were a number of occasions where something took me by surprise (for example, an unexpectedly triggering advert – I hadn’t even known that it was something that would trigger me so that was unfortunate for everyone) and I had a meltdown but as things go, it’s been better than it has been.
I’m not entirely sure how my ADHD manifests yet, having only received the diagnosis recently. If only it were as simple as getting the diagnosis and everything making sense… So I still have work to do in that regard. But I’m fairly certain – as certain as I can be at this point – that my issues concentrating and the feeling of my brain working against me are part of this picture. For the moment though, I’m in the dark about all of this. I’m in an impossible position medication-wise (I’m going to write about this in more detail at some point – it’s just that I’m still processing it all) so I’m stuck and unsure how to manage these problems. It’s frustrating and tiring and I wish there was an easy answer. Or even an easier one than I’m currently faced with. But there doesn’t seem to be. So I’m not sure where to go from here.
And the newest problem – because I really needed more problems… – are these migraines that I’ve been having over the last month. In the past, I’d have a migraine every few months or so but recently they’ve been different. They’ve been completely debilitating, painful to the point that I’ve ended up in A&E and had to have an ambulance called to the house because they’ve been so bad. They’ve also gone on for days when previously I could sleep them off and they’d be gone in twenty four hours. I’ve yet to find pain relief that does a decent job and I find that very scary. Calling 111 and them sending an ambulance because I was in so much pain but so light sensitive that even a darkened room felt too bright is a big deal and I’m scared of what’s next, of how it could get worse. I don’t know what’s causing them and no one else seems to either.
And finally… I’ve been the most consistent with therapy I’ve been since the pandemic began, even if I still find it hard and less productive when doing it over Zoom. But it’s looking like we’ll be back to face-to-face soon, which is exciting if scary – as I said, I’m finding it quite stressful to be out of my house. But hopefully, therapy will go back to being as helpful as it was pre-COVID, when it was face-to-face all the time. I don’t know exactly why it doesn’t feel the same over Zoom – maybe I find it harder to connect and talk about the hard stuff when I’m not in the same room as my therapist – but it just doesn’t, so I’m looking forward to getting back to the room.
So that’s it, I guess. This is my mental health (and I suppose, physical health update) before I start the final module of my Master’s, The Major Repertoire Project. Everything feels very messy and complicated right now, which isn’t exactly reassuring. I want to do well in the module, of course, but I also want to really enjoy it and really get the best out of it. The module doesn’t officially start until tomorrow but I’ve already started working on my project. I’m so excited. I just hope I can manage it with all of this other stuff going on.
Category: about me, adhd, anxiety, autism, covid-19 pandemic, depression, diagnosis, heds, medication, meltdowns, mental health, music, ocd, self harm, therapy, treatment, trichotillomania, university Tagged: adhd, adhd diagnosis, anxiety, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, chronic fatigue, chronic pain, coronavirus, covid-19, depression, diagnosis, drowsiness, ehlers danlos syndrome, fatigue, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, major repertoire project, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, mental health, mental health update, migraine, obsessive compulsive disorder, occupational therapy, ocd, online therapy, pain relief, pandemic, pandemic 2020, pandemic anxiety, self harm, sleepiness, swimming, therapy, trichotillomania, trigger, trigger warning, tw, university
Posted on August 8, 2020
Trigger warning: This post contains details of an emotional breakdown and mentions of self harm.
So results day is coming up. The timeframe is much as it ever was: school grades will be released as planned: A Level results will be released on the 13th August and GCSE results will be released on the 20th August. Degree results tend to depend on the specific university. Despite all of the upheaval over the last several months and the changes made to the expected academic year, many people still took exams of some kind, worked hard on projects or coursework, and pushed themselves to attain the highest marks they could so, regardless of the unusual circumstances, the anxiety around these days is no doubt mounting.
As I’m in the middle of my course, I’m not currently awaiting any grades. I completed my second module back in April and received my marks not long after. But every August (and to an extent, January, when some modules are assessed), I think of all those anxiously anticipating those numbers or letters that they’ve been working towards for months, that their lives have revolved around for so long (not a healthy mindset, mind you, but one that society has entrenched in us and one that I’d like to talk about further at a later date). I think of those young people and hope that, whatever grades they have received, they are coping in a positive and healthy way.
What with my GCSEs, some in Year 9 and some in Year 11, my AS Levels, my A Levels, all the results during my degree, and now my Masters, I’ve had many, many a results day. And the majority of them have been absolutely fine, if not better than fine. Some of them have been downright amazing. But I do have one very negative experience that I think is important to share because chance are, at some point or another, we will all have a bad results day that comes as a shock. So I want to tell this story and then share some advice for dealing with a similar situation…
It was a chilly morning in March 2013 and I was anxiously awaiting the release of the Autumn module results with my friends. The only course I’d had an exam in was Physics and although I’d found it difficult, I finished it feeling like I’d done okay. Having been absent for a lot of secondary school due to ongoing illness, I’d missed out on a lot of foundation material so I’d found the course difficult but during the most recent parent-teacher evening, my teacher told us (me and my Mum) that she had absolute confidence in my abilities and that I was on track for a high grade. So when I opened my results and saw the little printed ‘u,’ I was initially confused. Surely it was a mistake. I’d always gotten good grades and my teacher had said such positive things. I waited restlessly for the mark to be confirmed and when it was, it felt simultaneously like everything went still and like everything was crashing down around me. I made my escape and headed for the more secluded of the two toilet blocks – I felt like every emotion I was feeling was visible on my face and I had no idea how to talk about it or how to pretend that I was fine. I needed to be alone.
I was crying before I even made it into the toilet stall and I sat on the lid, sobbing so hard that my chest hurt. I was gasping for air but it was like my lungs had pinprick holes in them, the air rushing straight out again. Even to this day, I’m not sure I can explain exactly what I was feeling. It’s not especially subtle and sounds very dramatic but it felt like the world was ending. I felt like a failure and I felt like the only thing people would see when they looked at me was a failure. All I was was this ‘u.’ All I was was ‘unsatisfactory.’ I couldn’t move past that thought. Everything else disappeared.
I don’t know how long I sat in that cubicle, crying and self harming, before my friends tracked me down. I wanted to stay there and hide forever but somehow, I dragged myself up and walked out to face them. I still remember the shock on their faces; I still remember looking at myself in the mirror, my face a mess of thick, mascara stained tear tracks and my arms covered in scratches. I looked as bad as I felt.
One of my best friends – someone I still consider a good friend despite the fact that we don’t see each other as often as we used to – took control of the situation, taking me off campus to a coffee shop where she gently coaxed the story out of me over hot chocolate. We both had to go back for classes but she arranged for us to talk to a mutually beloved and admired teacher at the end of the day. I wasn’t convinced but I was operating on autopilot, drained of the will to protest. So after my lesson (a lesson in which I didn’t say a word), we went to see this teacher and in her typical fashion, kind but direct, she told me about some of her experiences and talked me through my options. Then I went home and didn’t return for over a week.
It’s worth noting that my mental health had been deteriorating exponentially over the previous year, so this happened at a time when I was completely unequipped to handle it and it was a catalyst for a lot of big decisions. I dropped out of the physics course, partly because I wasn’t mentally healthy enough to manage the number of courses I was taking and partly because I was so distressed by the experience that I felt completely incapable of going back into that classroom and continuing with the course. Just thinking about sitting in that room triggered anxiety too extreme to function. And I can admit now that there was some shame involved too: I couldn’t bear the thought of my teacher and my class looking at me and seeing a failure. So I dropped Physics, completed the rest of my courses, and started seeking professional help for what were now obvious mental health problems.
To this day, I still struggle to open exam results. I work extremely hard and then, when the results are released, I’m very careful to open them at a time when I feel emotionally equipped to handle whatever they’ll say and when I have the time to process the emotions that I’ll potentially experience. I’ve talked about this a lot with my therapist, in general terms, but then we talk about it every time new results loom. Not long ago, she referred to the experience as ‘a trauma’ and the relief of having it validated for the distress it caused and continues to cause was so overwhelming that I swear my heart stuttered in my chest. After having so many of my experiences (and the ongoing problems they caused) invalidated, it was a really emotional moment. That day had a massive effect on my mental health and my relationship with education and still triggers debilitating anxiety.
Not all results days are like this. In fact, most of them aren’t and I hope that you – you, reading this – never have to go through an experience like this one, but just in case you do, here are some of the things that I’ve learned about coping with difficult results…
IN THE MOMENT
ONCE YOUR EMOTIONS HAVE SETTLED
Despite the trauma of that day and the vivid images that come to mind whenever I recall it, there are three things that I actively choose to focus on:
This post turned out to be a lot longer than I’d intended but I hope it has been somewhat helpful. I hope you remember that whether your results are good or bad, whatever you feel is valid. You have spent years working towards this moment and it’s natural and totally okay to have strong feelings about them. It would be odd if you didn’t. You’ve worked hard for this. So feel what you feel and do what you need to do to make sense of this big, messy experience that you’ve gone through. It will be okay – maybe not in the way you expect but it will be okay. I can promise you that.
Category: covid-19 pandemic, emotions, event, meltdowns, mental health, self harm, therapy, tips, treatment, university Tagged: a levels, advice, anxiety, as levels, asd, autism, autism spectrum disorder, autistic meltdown, coping skills, coronavirus, covid-19, exams, fail, failing, failure, feedback, friend, friends, future, gcses, grades, kindness, meltdown, mental illness, pandemic, panic attack, processing emotions, resit, resits, results, results day, safe place, school, secondary school, self injury, sixth form, sixth form college, talking, teacher, trauma, traumatised, trigger, trigger warning, tutor, tutoring, tw, undiagnosed autism, validation
Posted on March 19, 2018
Trigger warning for self harm. Please don’t read this if it’s something that will upset you or trigger you. I only want this to be helpful, never harmful. I also want to add that, while I’m not promoting or endorsing it, I’m never going to say, “Just don’t do it.” It’s just not that simple. My hope is that more openness on this subject will make it easier for people to access support and therefore not feel the need to do it.
It’s been on my to do list to write more about self harm ever since I posted the first piece. It’s one of those things that I will never get tired of talking about, never get tired of raising awareness for. There are so many misconceptions around it. I mean, I get it: there’s something inherently un-understandable about wanting to hurt yourself, unless you’ve gone through it. And even then, it’s massively complicated. Feelings are weird and pain is weird; it’s not surprising that people struggle to make sense of it. But I’d like to think that things will get better, hopefully sooner rather than later.
I was inspired to write this post after watching a YouTube video, ‘Living With Self Harm Scars’ by Claudia Boleyn. I’ve been watching her videos for more than a year now and I particularly love her videos about mental health. Borderline Personality Disorder (BPD) and self harm still aren’t commonly talked about so to find someone describing their experience, both positive and negative, and giving advice is invaluable. And to find someone so thoughtful and eloquent is even better. I really relate to a lot of what she says.
She’d posted a video in which she wore a short sleeve shirt that exposed some scars from self harming and had received several messages about how validating it was to see someone with visible self harm scars, without shame or drama. So, as a response, she’d decided to make a video discussing the importance of living with these types of scars, which I found both interesting and useful, even as someone with ten years of experience with self harm. She put into words so many emotions that I’ve felt but for a long time couldn’t vocalize. Had I had something like this when I was younger, life would’ve been very different.
The video isn’t necessary for the rest of the post to make sense but I really recommend watching it:
(EDIT: The video has now been made private but as I said, it’s not necessary for the rest of the post. I’ll update if this changes.)
Some of the things she says are so true it’s painful.
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. As heavy as it sounds, Claudia describes it as ‘a way of not killing herself,’ which is a feeling I can empathise with. I’m sure many others can too. I’m not saying it’s a good thing and I’m not encouraging it. It is NOT a healthy coping mechanism. But that logic isn’t very persuasive when you’re dealing with such overwhelming emotions. Claudia also talks about this: “It’s not good for you in any sense… but it’s something. It felt like doing that at least proved that there was something there… And it just felt like this huge build up of feelings and I had to do something to get rid of it and doing that… was something.” I can completely relate to that and I think that’s a feeling that is often exacerbated by how difficult it is to get a diagnosis because having something is better than having nothing.
In my experience at least, trying to cut myself off cold from the only thing that helps me get through doesn’t help; it just makes the need worse and then there’s potential for me to do more damage. So I do my best to be safe while working on my issues in therapy so that one day, I can stop because I’m okay and not because I’m suppressing the urge. Because if that’s the case, I’ll always come back to it. To quote Claudia: “If you’re a self harmer then I think it’s always in the back of your mind as, like, a coping mechanism… The problem is: it’s always there so you always have to avoid it and avoid triggering it.” To give up self harming is a really big ask, and an even bigger one if you’re trying to do it without support. And if it’s too much for you, or for you to do all at once, that’s okay. I don’t feel ready to stop but one step at a time. The fact that my therapist supports this is a huge deal to me and it’s one of the things that told me that she was the right person. This has greatly lessened the pressure on me and has helped both me and my family to work through it a bit. I used to feel so guilty that I was hurting or upsetting them so I hid it and that was doing it’s own kind of damage. But now that we have a plan, now that we’re moving in a forwards-like direction even if it isn’t always easy, everyone seems to be coping with it better. I can’t imagine what it’s like for them to see me in that place but you can’t put that on top of the emotion that makes you want to do it; it will eat you alive. I think the only way forward is to try and talk about it with someone and do what you can to avoid it if possible.
I don’t have quite the same experience as Claudia does. That’s fine. Every response to self harm is a valid response. However you feel about it is okay; it’s your struggle. She talks about feeling annoyed and upset about having self harmed and wishes she hadn’t done it whereas I’m not (yet?) in that place. She talks about how it releases all that feeling but then you wake up the next day and feel like you’ve let yourself down. But, while that is quite a negative response, the way she talks to herself is very positive: “I’m just taking it as a stepping stone and saying, ‘Okay, you took a step backwards but you can take five hundred more steps forward. It’s fine.’” She talks about having a certain pride about them because they’re proof that she got through a really tough time. She can look at them and feel compassion and forgiveness for the version of herself in those moments: “It’s a part of me and it’s a part of my past and that’s okay. And I wouldn’t erase it and in a way, I wouldn’t want to because I’ve learned so much going forward.”
For me, self harm is usually a survival strategy. It’s getting through a moment that I feel like I can’t possibly get through. Maybe it’s the worst possible way to get through it but it’s better than not. So when I look at the mark the next day, or the next month, or the next year, I remember that moment: I remember getting through. I remember feeling like I can’t survive another second and then I remember the calm afterwards. I remember that I did what I had to do to survive. I wouldn’t say I’m proud of that – or proud of the scars – but I’m certainly not ashamed of it. Maybe one day I’ll find something that gives me that feeling without doing any damage to myself. How wild and glorious would that be?! But that’s the end goal, not the next step.
My other use for self harm is to mark a traumatic event. I think one of the hardest things about struggling with your mental health is the fact that people often can’t see what you’re going through and I needed it to be seen. I felt so traumatised by the strength of the emotions and by the meltdowns and I just couldn’t process that without a physical, identifiable injury to associate it with. Again, I’m not saying that this is a good method of coping but it was all I had at the time. Now, I have other things to try. I haven’t yet found anything that works but what’s important is that I’m trying, even if I don’t want to sometimes. This is a whole other issue that I do want to talk about at some point: to someone who hasn’t ever self harmed, the idea of not wanting to stop doing something that is so bad for you is weird, but is a feeling that is often associated with self harm. That feeling can be very isolating because many people don’t understand it, and many more react badly to begin with. And feeling misunderstood can really exacerbate the feelings that lead a person to self harming. I think that discussing self harm and learning about it can only help with that. There will be people who say that bringing awareness to it will encourage people to self harm and while that may be true to a certain extent, the amount of people it could help would massively outnumber that.
People do ask about the scars. I’ve personally never had an unkind response to them; it’s usually just awkward. Even if someone doesn’t actually bring them up, I see them notice and it can get really uncomfortable because no one knows how to handle it. Claudia mentions being embarrassed about people seeing them and talks about how she has tried in the past to cover them up. Sometimes that’s just easier. It’s so complicated and it’s hard when people don’t get it or jump to conclusions. There’s the typical, “You’re asking for attention,” which has always frustrated me no end. I’m not sure when asking for attention became such a negative thing. Of course, there will always be people who abuse the compassion of others, but I would hope that our first reaction would still always be to try and help. If someone is asking for attention in some way, they probably need it, even if the reason why isn’t immediately apparent. I never tried particularly hard to hide what I was doing because I think that, subconsciously, I wanted someone to draw attention to it and see what I was going through. But at the same time I didn’t feel able to talk about it.
Sometimes people see the scars and assume that you’re ‘showing them off’ when you don’t cover them up, which is weird to me. I’m not sure why you’d want to ‘show off’ or ‘flaunt’ the evidence of a moment where you’d gotten so low that you had to physically take it out on your body. When you think about the lengths people go to to hide their scars – wearing long sleeves in a heat wave, making endless excuses as to why you can’t go swimming, hiding them with make up or bracelets or tattoos, spending every second thinking about your scars and how you’re going to make sure that no one sees them – it’s clearly not a straightforward issue. And as Claudia says, it’s not showing off; it’s a form of body positivity, of learning to be comfortable in your skin, regardless of what that skin looks like. That is a hard thing; it’s something that should be supported, not torn down.
There’s obviously a lot more to talk about when it comes to self harm but this is already a lot longer than I’d originally intended it to be! This is something that makes me really emotional and fired up so I could probably write a book on it. It’s so important to talk about and talk about openly and honestly. I wish I’d found someone writing about it or recording YouTube videos about it when I’d started struggling with all the things I talk about on this blog. Had I, and the people around me, had more knowledge and awareness about all of this stuff, my ‘mental health journey’ would’ve been very different.
Category: mental health, response, self harm, therapy, treatment, video Tagged: actuallyautistic, actuallydepressed, asd, autism, autism spectrum disorder, autistic, autistic adult, claudia boleyn, cutting, depressed, depression, emotions, feelings, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, scars, self harm awareness, self harm scars, self injury, self injury awareness, trigger, trigger warning, tw, youtube, youtube video, youtuber
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 all five songs are now available on all major music platforms. However, there’s still more content to come…