World Mental Health Day 2021


As I’m sure many of you know, today is World Mental Health Day and the theme, chosen by the Mental Health Foundation, is ‘mental health in an unequal world.’ WHO seems to be building it around the pandemic, rather than as a problem of its own, but from what I’ve seen in the newsletters and on the social medias of many mental health charities and organisations, most seem to be following the lead of the Mental Health Foundation.

According to the Mental Health Foundation’s website: “2020 highlighted inequalities due to race and ethnicity, sexual orientation and gender identity, and the lack of respect for human rights in many countries, including for people living with mental health conditions. Such inequalities have an impact on people’s mental health. This theme, chosen for 2021, will highlight that access to mental health services remains unequal, with between 75% to 95% of people with mental disorders in low and middle-income countries unable to access mental health services at all, and access in high income countries is not much better.” It goes on to say: “Many people with a mental illness do not receive the treatment that they are entitled to and deserve and together with their families and carers continue to experience stigma and discrimination… The stigma and discrimination experienced by people who experience mental ill health not only affects that person’s physical and mental health, stigma also affects their educational opportunities, current and future earning and job prospects, and also affects their families and loved ones.”

Statistics provided by Mind (x)

I have my own experience with the mental health system – which I do want to touch on – and have heard from many others about their experiences but I wanted to read into the research around these inequalities further, both to get a better factual understanding and to put my own experience in context (beyond an anecdotal one). The research is sporadic at best but here are some of the statistics I found…


  • “NICE [The National Institute for Health and Care Excellence] recommends that people should be able to access services when they need them. However the proportion of people who felt they had definitely seen NHS mental health services enough for their needs reduced from 47% in 2014 to 43% in 2018.” (x)
  • In 2020, it was reported that approximately 1 in 3 people who experience mental health problems are able to access the support they need. (x)

From these statistics, it’s clear that far too many people aren’t getting the support that they need.


  • For those with common mental health problems, 36.2% reported receiving treatment.
  • Women are more likely than men to receive treatment for all mental health conditions, with 15% of women receiving treatment compared to 9% of men.
  • Young people aged 16-24 were found to be less likely to receive mental health treatment than any other age group.
  • White British people are more likely to receive mental health treatment (13.3%) compared to BAME groups (7%). The lowest percentage of people receiving treatment were those from black ethnic minority groups (6.2%).

These statistics clearly show the disparities in the availability of treatment, more supporting evidence for the statement that the Mental Health Foundation is making with the theme for this World Mental Health Day.


  • “There is very little national information about mental health services for children and young people, and what information there is suggests quality is declining. [Research] indicates substantial cuts to services, increasing demand, increasing thresholds for treatment, very long waits (more than a year) for specialist services, and a resultant decline in accessibility.” (x)
  • Approximately 1 in 3 children and young people with a diagnosable mental health condition get access to NHS care and treatment. (x)
  • More than 338,000 children were referred to CAMHS in 2017, but less than a third received treatment within the year. (x)
  • Around 75% of young people experiencing a mental health problem are forced to wait so long their condition gets worse or are unable to access any treatment at all. (x)
  • In a YoungMinds survey, three-quarters (76%) of parents said that their child’s mental health had deteriorated while waiting for support from Child and Adolescent Mental Health Services (CAMHS). (x)

This research all indicates that young people in particular are being let down by the health care system.


  • Demand for secondary care (which generally treats people with severe mental health problems) is increasing, and there is evidence to suggest services are becoming less accessible… There is little information available on the outcomes that services achieve.” (x)
  • “There is no high quality national information on waiting times for secondary mental health services. In a 2014 survey, 20% of people with severe mental illness who were offered talking therapy reported waiting more than a year to access it.” (x)

The statistics show not just that the need for mental health care is increasing but the need for long term mental health care is increasing but that it’s also very difficult to access.


“A study of 513 British adults diagnosed with a mental illness also reveals the damaging consequences that hidden waiting lists – the wait between referral and second appointments – have on the lives of patients living with severe or common mental illness.”

  • “Of those on a hidden waiting list, nearly two thirds (64%) wait more than four weeks between their initial assessment and second appointment. One in four (23%) wait more than three months and one in nine (11%) wait longer than six months.”
  • Respondents living with severe mental illness – including eating disorders, bipolar disorder and PTSD – were left waiting up to two years for treatment. Others were left waiting up to four years for treatment for depression, anxiety and suicidal thoughts.”
  • Two-fifths (38%) reported that they, or someone on their behalf, had contacted emergency or crisis services while waiting for their second appointment, while 39% said that waiting led to a decline in their mental health.”

It’s clear that, beyond the difficulty of even getting into the mental health care system, once in it, the process of actually getting the support you need is much too slow – so slow in fact that it’s exacerbating the mental health problems that those waiting are seeking help for.

Now I want to look at my experience of getting support for my mental health…

  • For more than two years, I was repeatedly dismissed and had my feelings and experiences invalidated by multiple doctors and services. No one took me seriously. Eventually, my Mum took me to a private psychiatrist and I was diagnosed with Generalized Anxiety Disorder, Social Anxiety Disorder, Depression, and OCD. Having had no idea what I was struggling with, I’d done a lot of research and asked about the quiet presentation of Borderline Personality Disorder, which my psychiatrist initially rejected but then reconsidered and diagnosed me with it after reading my research and personal notes (it has since been recommended to me multiple times – sometimes by doctors who don’t even know me – that I have this diagnosis removed from my file because “people might make assumptions”). Getting an NHS referral for an Autism Diagnostic Assessment was similarly difficult as he felt that I didn’t fit the classic presentation (I do apparently fit the classic FEMALE presentation though).
  • There was no follow up after this diagnosis and we were told there was no support available so my Mum investigated private therapists. I tried CBT for a while but didn’t find it helpful so I tried DBT instead, which has been a much better fit.
  • All of this private treatment is obviously not cheap and I am so beyond grateful that my family is fortunate enough to support me financially. I honestly don’t know where I’d be without it, whether I’d even be here. But the cost of it does cause me significant worry, only adding to the anxiety I already experience.
  • With so many of my problems connected to my Autism, had this whole process been… easier, simpler, quicker, less traumatic, or something… so many of my health problems wouldn’t have deteriorated to the level that they have. Had I been diagnosed earlier – had even one medical professional believed me – things might’ve been so different. I try not to dwell on that because there’s no point wasting my energy on what might have been but it is the truth.
  • Having said that, considering some of the stories that I’ve read or have had shared with me, my story isn’t that bad. I’m positively lucky compared to some and that’s a confusing, complicated thing to say, knowing how traumatic this has all been… and continues to be.

Since then, I’ve developed near constant chronic pain throughout my body – something that’s obviously had a big impact on my mental health – but over a year later, I’m still waiting for the NHS physiotherapy and hydrotherapy referrals to go through. I have started Occupational Therapy and with the Pain Clinic (both through the NHS) but with the end of my Masters, I had to take a break because they were too painful and/or upsetting to manage alongside all the work. I’m starting back this week. It still bothers me that no one’s ever even tried to find out why the pain started though.

Almost six years after my ASD diagnosis, the Neurobehavioural Clinic called to offer me an appointment, to do what I had no idea. But at the end of the two part session, I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome and ADHD – aged twenty six – both conditions having gone unnoticed because no one had ever taken my associated problems (problems that have been there my whole life) seriously. They’re both conditions that often occur alongside ASD. The hEDS diagnosis would, in theory, push my physiotherapy and hydrotherapy referrals but, as I said, I haven’t heard anything and almost a year later, my ADHD is still untreated. My psychiatrist was happy to ‘move’ that condition to his care but the consultant I saw didn’t want that, which is especially frustrating because she’s so difficult to get in contact with.

And finally, I may be getting answers to another ongoing medical problem: severe dizziness, light-headedness, nausea, physical weakness, and breathlessness when I stand up for too long. We’ve been trying to get support around this for so long that I can’t even remember when it started. This too may well be related to my Autism and I can’t help thinking that it’s another thing that should’ve been discovered sooner.

All of these things have had a profound impact on my mental health and going through the agonising process of diagnosis again and again has left me wary, fearful, and angry at medical professionals. It’s deeply ingrained in me to be polite and respectful but it doesn’t take much to send me flying off the handle; I walk into each appointment feeling like a tightly coiled spring. I leave pretty much every appointment in tears at best, raging at worst. Because I’m so. freaking. tired. of feeling like this. Of feeling like no one believes me, of being made to feel like I don’t know what I’m talking about, of being made to feel like I don’t know what I’m feeling. I feel so worn down by the constant let downs. At this point, I think I’m only going back because I don’t know what else to do.

I have no doubt that social media will be filled with nice words and encouraging quotes today. But we need more than that. World Mental Health Day is about more than that. Or it should be. It should be about pushing for change and improvement. The Mental Health Foundation is absolutely right that the inequalities in the mental health care system need to be addressed but looking at these statistics, it’s also clear that the standard of care needs to be better. For everyone’s sake. After all, there’s very little difference between not getting any support and being on a list waiting years for support.


BPD As Described By Claudia Boleyn

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.

Everything Changed For Me This Year (Autism Awareness Day)

Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.

For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.

But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).

(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)

  • I was diagnosed with Depression and Anxiety by one psychiatrist.
  • I was diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD) by my long term psychiatrist.
  • I was diagnosed with Autism Spectrum Disorder and had the BPD diagnosis confirmed at the local Neurobehavioral Unit.
  • My therapist explained that my mental health issues, particularly my BPD, may have stemmed from the continued invalidation of my ASD.
  • A few years passed.
  • After a discussion with my psychiatrist, my mental health related diagnoses were updated, changing to Treatment Resistant Depression (TRD), Generalised Anxiety Disorder (GAD), and BPD.
  • I was (re-)diagnosed with OCD after further sessions with my psychiatrist.
  • My GP diagnosed me with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) when we could find no obvious cause for Chronic Fatigue I’ve been dealing with since I was twelve.
  • A couple of years passed.
  • I started to develop Chronic Pain that got dramatically worse over a period of several months.
  • I was referred to a specialist who diagnosed me with Hypermobility (apparently individuals with Hypermobility are seven times more likely to be autistic), which led to a diagnosis of Hypermobile Ehlers Danlos Syndrome (hEDS), explaining my Chronic Fatigue and Chronic Pain as well as a number of other ‘smaller’ symptoms that, due to the bigger problems, had been ignored. This, as far as I can tell, makes the ME/CFS diagnosis void.
  • I was also diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), many of the symptoms overlapping with my ASD, during the same period.

And suddenly all of the pieces started to click together:




Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.