Living With Unmedicated ADHD
Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Migraines, Tooth Pain, And Blood Pressure Monitoring
Posted on June 5, 2021
So often in my life it seems, medical stuff is like waiting for a bus: weeks or months go by and then suddenly a whole slew of them show up. And that’s certainly been true of the last few months. Just as the final module of my Masters was starting, I was hit by a series of awful migraines, suffered with terrible tooth pain, and spent twenty four hours hooked up to a blood pressure monitor, a test ordered by a neurology unit in London. So it’s been a pretty hectic time…
MIGRAINES
At the time of writing this, I’ve lost approximately half of the last forty days to migraines.
I’ve had migraines before – maybe a handful a year, depending on my stress levels and the medication I’m taking – but they usually only last for a day or so before fading away. They’re not pleasant but they weren’t seriously impacting my life. But then I had one that lasted roughly four days and I ended up in A&E because, having fairly recently had the Astra Zeneca vaccine, my doctor was worried about the extremely rare side effect of a blood clot. I was sure it was a migraine but agreed to go and after most of the day there, I was released; the doctor agreed that it was most likely a bad migraine but told me to come back if it didn’t go away. And after another day or so, it did. While I was somewhat irritated about losing a day that should’ve been spent working on my end of semester assessment (despite the pain, I was pushing myself to work on it as I could, in the moments where the painkillers actually worked – I think that’s mainly why it went on so long personally), I am really grateful to all of the hospital staff. They were all great – warm, considerate, and personable – despite the somewhat alarming COVID precautions everywhere that weren’t exactly great for my anxiety. But they were really kind and gentle with me throughout my visit, making the whole experience a lot easier than it could’ve been.
I’d thought that that was it. But then, again and again, I was hit by migraine after migraine, all lasting unusually long periods of time (for me, at least). They were averaging out at about six days each time, sometimes more. That was extremely stressful, bearing in mind that I’m at the beginning of the homestretch of my Masters with this final module accounting for 60% of my final grade, and I was utterly miserable from the pain. I was also so light sensitive; at one point, even the darkest room in the house felt too bright and I dissolved onto the floor in tears, which only hurt my head more. It was awful. That was the first time we called 111 and they called paramedics. That time they determined it was, again, a severe migraine and recommended two other pain medications to try in the hope that they’d be more effective than Nurofen.
A couple of migraines later, with minimal help from the new painkillers, I had another really bad one, which had us calling 111 and they sent paramedics (both such lovely guys who fell in love with the cats and talked musicals with me while they did their tests). This migraine was slightly different: it had all of my normal migraine symptoms but I also had this almost blinding pain at the front and right side of my face. They thought it was probably a migraine but suggested talking to my doctor about having a CAT scan and/or whether there was something going on with my cranial nerves. They also had some practical, experience based advice around pain relief (one of them had personal experience with severe migraines). They said they could escort us to the hospital on the off chance that a doctor would do a CAT scan but did acknowledge that they might just take blood and keep me there while it was checked again, like my previous visit to A&E. So we chose the second option: Mum was going to go out and get the new medication option and call my GP ASAP.
TOOTH PAIN
That was the most recent migraine (at the time of writing this). As time passed, the pain in my head started to decrease, then my face, settling in my back-top-right teeth; every time they – and finally just one (after about a week) – knocked against the bottom teeth, the pain was so bad that my entire body would freeze up.
As soon as it had settled in my teeth, we’d called the dentist and they brought me in as an emergency (a few days wait rather than a few months). The dentist checked, took x-rays and saw some decay in the painful tooth, fairly close to the nerve root, and it already has a pretty big filling in it. At one point, somehow, the hEDS diagnosis came up (I was diagnosed since my last dental appointment) and the dentist said that she’s seen and heard about multiple people with a form of EDS (or who were later diagnosed with it) struggle with tooth decay, as well as being scolded by their dentists for not doing a good enough job with their dental hygiene even though they actually were; it was often the EDS causing problems, not necessarily their actions. This really is the diagnosis that keeps on giving (imagine a sarcastic snort at the end of that sentence).
Anyway, she diagnosed an abscess and gave me two treatment options: extraction or root canal therapy, which would involve multiple, multi-hour sessions that would be painful, ultimately might not work, and probably wouldn’t last into my late thirties. The whole thing felt pretty overwhelming and I ended up in tears. Extraction was the obvious choice as far as I was concerned and everyone else agreed; there seemed to be way too many downsides to the root canal option (plus it sounded horrendous and I find dental work, even fairly straightforward stuff, very distressing) and even if I was inclined to choose it, it’s the worst possible time given the end of my Masters. Even an extraction is going to be a significant disruption. I’m applying for extenuating circumstances, which both my supervisor and module leader have encouraged, so hopefully that’ll mean I end up with the same amount of time to do the work as everyone else.
So, I’ve been referred for an emergent extraction under general anaesthetic but I don’t know when that’s going to happen. They also prescribed me some antibiotics for the mean time. Now it’s a waiting game. But several days after the appointment, either the antibiotics are working or the nerve is dying or both because the pain is getting better and I feel more human. There are periods of time where I can actually ignore it, which is a huge deal considering how much pain I’d been in. So that’s definitely something to be grateful for.
BLOOD PRESSURE MONITORING
A couple of months ago, I had an appointment with a doctor from a neurology unit in London, which I believe I mentioned in this post. After spending most of the appointment vehemently telling me there was no point in getting any tests, he somewhat reluctantly offered to write to my GP, suggesting I have my blood pressure monitored for twenty four hours. It took forever to get a monitor from the hospital but finally test day came.
I had to go to the hospital where they fitted the monitor (found the right size for my arm, wrapped me up, made sure it was taking readings, looped the cable behind my neck, and used the tie from my coat to secure the monitor/data recorder around my waist) and gave me the instructions and paperwork to go along with the monitor. I wasn’t allowed to get it wet so I couldn’t have a shower while wearing it but since that’s when I usually get my blood pressure related symptoms, we devised a plan where I would go through the motions – with the shower on to create the heat and steam – so that it would still record whatever was happening to my blood pressure during a shower, as much as possible at least. The whole process was relatively stress free and the two women who sorted me out were great, warm and extremely competent but flexible to my needs. I’m really grateful to them for making it so easy.
All done, we headed home. It was a bit weird with the weight of the monitor, the too long cable getting caught on stuff, and so on but overall, it was fine. The cuff got very tight – tighter than I remembered them getting when you get a one off test – but it wasn’t a big deal and the rest of the day went on as normal. It was a bit of a struggle to get to sleep because I couldn’t get comfortable with the cuff on my arm but once I did get to sleep, the inflating and squeezing didn’t wake me up, something I’d expected to happen.
However, when I woke up, my arm was really sore. I felt like I’d been punched a hundred times in the same place, convinced the skin was bruised underneath the cuff (it wasn’t and no bruise ever emerged but damn, it was tender). I think the cuff had slipped in the night as well because I had several error readings on that second day.
I had my pretend shower and, as usual, felt shaky, dizzy, and lightheaded; having thought ahead, I’d timed things so that the monitor would be taking the reading right at the end of my fake shower. I’m intrigued to see what that reading says. That done, Mum helped me wash my hair, leant over the side of the bath; I had an online meeting and couldn’t bear the thought of doing that with unwashed hair. It wasn’t very dignified, especially with all the extra towels wrapped around me to keep the monitor dry, but it got the job done.
I wore it for the rest of the twenty four hours and then, with great relief, unwrapped the cuff. By the end, my arm felt really sore from the squeezing, plus it had started to pinch in various places at some point. There’s also that Autism-sensory-thing of wearing something constantly constricting, which starts causing anxiety after certain periods of time, like a long day in skinny jeans or wearing my retainer all day. Does that make sense? The anxiety had been building for the last few hours and it was wonderful to take it off.
Mum dropped it back at the hospital, so now I guess it’s another waiting game. I don’t know when we’ll find out the results and the conclusions drawn from them. I assume that they’ll let us know at some point, although it wouldn’t be the first time we’ve had to chase results. As I said, all we can do now is wait.

So, yeah, hectic. At a very inconvenient time. But that’s life and I’m determined not to let it spoil the last of my Masters and this project that I’ve been looking forward to for so long. I am going to make the most of every good day I have, take the extenuating circumstances gratefully, and continue working as hard as I can.
BPD As Described By Claudia Boleyn
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
- She talks briefly about her parents separating when she was a child and how, while it wasn’t an actual abandonment, it could be perceived that way, especially in the mind of a young child.
- “I think I do struggle with that feeling that people are gonna leave, that people are gonna leave me.”
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’ve struggled with] that feeling of being not good enough and that when people know the real you, they’re not gonna want to stick around and stay with you. I really have struggled with that.”
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 do have very, very strong, very, very intense emotions and I have done since I was younger.”
I most definitely have very strong emotions, sometimes overwhelmingly so.
- “I don’t seem to have a middle point, for emotions at all. I don’t have a happy setting. I know that sounds odd but I don’t have a happy setting. My happy setting is feeling calm and I rarely manage to feel calm. I either feel very excited, very happy or very agitated or I feel anxious, and depressed, and low, and suicidal. I don’t have that relaxed place.”
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’s exhausting because everyday I’m going through these hundreds of emotions and I’m feeling the full force of them as if big things are happening when really hardly anything is and it exhausts me. It’s really tiring and it’s really hard to deal with day to day when your emotions can be so easily triggered like that. It says, ‘you can go from feeling very happy and confident in the morning to low and sad in the afternoon,’ and that is so me because I’ll wake up in the morning some days and feel great and… I don’t know… It happens so quickly and suddenly I’m suicidal… Most people assume that something big must’ve happened to make you get that low but with BPD it doesn’t need to be a big thing… I get really big ups and downs and there’s no middle ground for me.”
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.
- “I do get really big ups and downs and there’s no middle ground for me emotionally. There is no centre.”
On Having Unstable Sense of Self
- “I’ve had to develop a sense of who I am because, I think with BPD – just from my experience – I feel very empty and very blank canvas-y and I do struggle with understanding who I am: ‘Am I a good person or a bad person? What do I think about things?’ Sometimes I feel like I’m not even here, everything’s too much, and I just think… ‘What am I? What is this? What’s going on?'”
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.
- “You might notice I use the name ‘Claudia Boleyn’… It’s not my birth name anyway and I think what I’ve tried to do because of the issues I’ve had with feeling so empty and confused about this kind of thing is I’ve tried to form an identity based on people I admire… Some people think it’s like copying. It’s not necessarily copying; it’s trying to deal with that empty, confused thing. There are things I like and things I don’t like and I can tell you the things I enjoy and the things I don’t enjoy but I couldn’t tell you about me as a person because it changes so much. I couldn’t tell you if I was an introvert or an extrovert… it’s just a million things. I couldn’t describe myself. Or if I were to describe myself, you could ask me the next day or an hour later and it would entirely change… I do change a lot. Fictional characters are important to me and historical characters are important to me because they help me ground myself a little bit. It’s hard because, with BPD, people who don’t have it find it very difficult to understand that. So with the Anne Boleyn thing for me, she represents a lot of what I find admirable and I want to replicate some of those qualities but at the same time I want to be myself. It’s a really hard balance to strike. It’s not that people with BPD don’t have that personality, it’s that they feel so much so much of the time and they can change so often that it gets confusing, you know? What is my stable identity? What is that? It’s really hard to figure out when it’s changing all the time.”
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
- “I haven’t had a super serious romantic relationship… I actually am petrified – I tell you, PETRIFIED – of being in a serious, serious, like, forever relationship because, when you have something like BPD and you have that mindset, everything is very all-or-nothing so I do worry about the state of my emotions when being in love, and being in that sort of intense relationship because just the normal things for people with BPD can be overwhelming so with something like love, which ‘normal people’ find absolutely out there, for someone with BPD, that’s a lot. That’s a lot to deal with. I think I want to be in a really stable place for that.”
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…
- “It’s a lot to deal with if you have BPD. Maintaining those relationships is hard because it means so much to you. It means a lot. That being said, it’s not that I find it hard to keep stable relationships, or maybe I’ve just got lucky with the ones I’ve got… I do a thing where… (*see point below)… because of the BPD, where I do not talk to someone for a very long time and I don’t know why this is but I find it really hard to keep contact with people. So my closest friends are those people who are very understanding and very patient.”
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.
- *”Can I just say… if you’re a friend of mine and you’ve been a friend of mine once, I consider you a friend for my whole life. I just wanna put that out there.”
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
- She explains that, with BPD, acting impulsively often involves doing harmful, dangerous, and risky behaviours, anything from shoplifting to taking drugs.
- She, understandably, doesn’t want to discuss her personal risky behaviours on the internet but does elaborate on the feelings involved.
- “The impulse control is bad with me. With BPD, because of the high emotions and feeling everything so intensely, obviously you feel so out of control and it can be really hard to control your impulses sometimes.”
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 am constantly suicidal and I have been as long as I can remember. Now that sounds odd. I don’t mean in the sense that I’m going to actively go out and do it constantly 24/7. I just mean that there is a constant undercurrent with me… I think it’s called suicidal ideation, it’s sort of being passively suicidal. It’s that feeling of, even when you’re at your best, thinking, ‘well, I’m not going to do it but if a car hit me right now, I wouldn’t complain.’ It’s hard to exist like that. I think it’s hard for people who don’t understand that [to get it].”
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.
- “I think it’s to do with the huge emotions and the exhaustion and being so confused and things can feel like so much and there is a lot of pain that comes with BPD because being so emotional, reacting to stuff so strongly can make you feel like you’ve got no skin. It’s like you’ve got no emotional skin, nothing to protect you, and it’s painful and it’s hard and it’s tiring and it’s exhausting and it leaves you with this, for me, this undercurrent of suicidal ideation.”
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.
- She briefly mentions two suicide attempts but again, completely understandably, doesn’t want to share the details with the internet.
- “I’ve been a self harmer since I was about twelve years old. I began self harming before I knew what self harming was… It just came as a sort of reaction to me. I used to scratch my thumb with a safety pin because I felt so upset and angry and when I felt a big emotion, I would just scratch until my thumb bled. I didn’t know self harm was a thing. It was a response to the emotions and feeling too much and feeling completely trapped in my body and not knowing what to do.”
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 do feel very empty and this sounds incredibly emo and angsty but it’s just a default setting for me, as it can be for other people with BPD. I just feel very empty and alone and just scared really. I think, living with BPD, you’re in a constant state of low fear, you know… terror sometimes and you get so used to it that it’s just there and it’s only when you come to think about it, you think, ‘wow, I’m living with this in me all the time.’ It’s quite hard to think about actually but it also makes me feel proud of myself for still being here and fighting through and getting the help that I needed and sorting myself out.”
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.
- “I do have a constant sense of emptiness and just feeling like nothing is ever enough. Everything is too much for me and yet it’s simultaneously never enough for me, it’s never enough to fill that empty feeling.”
‘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
- “Yeah, I’ve had some issues with anger… [but] I’m not a violent person at all. Whenever I get the extreme upset and anger, I’ve always taken it out on myself. I’m a self harmer. I can be truly cruel to myself sometimes and when I feel that intense anger, I’ve always acted more inwardly.”
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
- She talks about having had psychotic experiences and that they’re triggered either by feeling really low or by very intense emotion.
- “I’ve had some very scary things happen before because of psychosis.”
- She talks about a period of time where she genuinely believed that there would be a school shooting.
- She goes on to talk about how, after talking about it with her psychologist, she learned that it was her brain’s response to extreme stress and “thankfully, [her] life is different now” so she hasn’t been experiencing that level of stress and the resulting psychotic episodes.
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 get depersonalisation and derealisation, where I don’t feel like I’m a real person and I feel like the world is not real. Sometimes I get that when I’m getting towards psychosis because I feel like nothing is real and I’m not convinced… sometimes it feels like this is all some virtual reality or something and I’m not sure what’s real and what’s not and ‘Am I alive? Am I imagining this?’ and it can get really scary and it spirals out of control quite fast. But yeah, I do get very numb and checked out and when I get ‘bad,’ sometimes I will sit down for a while and lose a huge chunk of time…”
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.
Finding Hope