Posted on October 10, 2021
‘MENTAL HEALTH IN AN UNEQUAL WORLD’
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…
ACCESS TO MENTAL HEALTH CARE
From these statistics, it’s clear that far too many people aren’t getting the support that they need.
INEQUALITIES IN ACCESS TO TREATMENT (x)
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.
This research all indicates that young people in particular are being let down by the health care system.
SECONDARY [LONG TERM] CARE
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.
HIDDEN WAITING LISTS (x)
“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.”
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…
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.
Category: about me, adhd, anxiety, autism, bpd, depression, diagnosis, emotions, heds, medication, mental health, ocd, research, therapy, treatment Tagged: accessibility, adhd, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, borderline personality disorder, bpd, camhs, cbt, chronic pain, dbt, depression, diagnosis, diagnostic process, eds, ehlers danlos syndrome, gad, generalized anxiety disorder, heds, hypermobile ehlers danlos syndrome, medical trauma, medication, mental health, mental health awareness, mental health care, mental health foundation, mental health in an unequal world, mental health in the media, mental health services, mental health stigma, mental health treatment, mental illness, mental illness awareness, mental illness stigma, neurodiversity, nhs, obsessive compulsive disorder, ocd, private health care, private mental health care, private psychiatric care, research, social anxiety, social media, statistics, stigma, therapy, wmhd, world mental health day, world mental health day 2021
Posted on May 29, 2021
Trigger Warning: frequent mentions of self harm, suicidal thoughts, and suicidal behaviour. If this is something that you will find triggering or upsetting, please don’t read ahead. Please always put your mental health first.
Given that it’s Borderline Personality Disorder (BPD) Awareness Month, I felt I should write at least one post about BPD, although one is all I have time for at the moment, what with my uni workload. This is one of the videos I watched pretty early on after my BPD diagnosis and it really, really helped me. It’s such a good, informative video, completely free of the stigma that is often attached to this diagnosis.
I really recommend watching the whole thing but I want to talk about some of the points Claudia makes, as well as adding some of my own thoughts.
Borderline Personality Disorder (also known as Emotionally Unstable Personality Disorder) is a type of personality disorder, a type of mental health problem where your attitudes, beliefs, and behaviours cause you longstanding problems in your life, that impact your life daily. Struggling with how you think and feel about yourself and others – and that causing problems in your life – can lead to an investigation into whether you might have BPD. Having said this, many clinicians are reluctant to diagnose it as there is such stigma attached to it, with many in the health sector seeing those diagnosed with BPD as ‘difficult’ and ‘attention seeking’ (x). Personally, I have been told on numerous occasions that I should consider abandoning the diagnosis to avoid negative assumptions from doctors, a suggestion I find deeply offensive and have ignored. It explains things about me that I can’t otherwise explain and I’m not going to give that up because of other people’s ignorance.
Considering how many misunderstandings and how much stigma there is around BPD, Claudia uses the framework of the diagnostic criteria, as detailed by the Mind website (as of 2016, although the diagnostic criteria listed has not changed), to describe the symptoms of BPD and how she experiences them.
Fear of Abandonment
I definitely relate to this. I’ve had several people abandon me, intentionally or not, and so I have serious anxiety about people leaving me.
I also relate to this, although my fear usually stems from feeling like a burden and that one day, the people in my life will feel like I’m just too much of a burden and walk away.
On Feeling Emotions Strongly
I most definitely have very strong emotions, sometimes overwhelmingly so.
This is very true for me too. My emotions tend to be at the extreme ends of the scale with very little middle ground.
It can be scary and as Claudia says, exhausting, to have such big emotions that ricochet around inside you, changing every time they collide with something. If that makes sense. When they’re so big and they change so quickly and dramatically that it’s like the ground is constantly rocking until your feet; nothing feels stable or reliable.
On Having Unstable Sense of Self
I really relate to this, to feeling empty, to feeling like I don’t truly know who I am. I know little things, that my favourite chocolate is milk chocolate and that thunderstorms make me feel alive. But the answers to the big questions about myself continue to elude me: Am I a good person or a selfish person? What do I really think about this issue or that issue? Am I actually good at the things I think I’m good at? What are my strengths? My weaknesses? It’s very confusing.
I can definitely understand taking the best of our favourite people or fictional characters and building an identity and personality using those traits. I’ve absolutely done it. When I was younger, I would accidentally take on the whole person with both the traits helpful and unhelpful to me; I’d end up making decisions that weren’t what I wanted at all but were what the person I was emulating would do, which got me into some complicated situations. But now that I’m older and I understand that this is something I do, sometimes unintentionally, I’m better able to use it to strengthen me, rather than completely change me.
On Finding It Hard to Make and Keep Stable Relationships
This definitely resonates with me. Romantic relationships scare the crap out of me. The only relationship I’d consider significant was late in my teens, before I had my diagnoses of BPD (as well as ASD, depression, anxiety, etc) and it ended very traumatically. While that will always be on the other person, I did really struggle throughout the time we knew each other, especially with the big emotions and fear of abandonment curtesy of the BPD, as well as the social difficulties of ASD. And with no explanation for why I operated that way, it was probably doomed from the start. Still, the other person didn’t need to be such a cruel, manipulative human being…
I really relate to what she says about relationships being complicated because of how much you care. I’ve been devastated by the ending of friendships, relationships, etc and that does make maintaining relationships of any type very stressful at times: the idea of saying or doing the wrong thing and that damaging the relationship irreparably (even relationships that, in theory, aren’t so fragile that one mistake would ruin them) is terrifying and that in itself can lead to making bad decisions, saying or doing things, etc that aren’t true to who you are, that could damage the relationship. If that makes any sense.
I also relate to what she says about not being great at continuous contact. For me at least, I think it’s about exhaustion: communication is so loaded and requires so much energy, social energy, emotional energy, etc. Sometimes it all just becomes too much and I have to retreat for a while to recover.
This is definitely a trait of mine. If you’re a friend once, you’re a friend forever (barring a serious falling out). It’s one of the things that I find very confusing in other people: when they don’t feel the same way about friendships. It just doesn’t make sense to me.
On Acting Impulsively
I don’t consider myself a particularly impulsive person. In fact, I’ve always been terrified of not being in control of myself or making thoughtless decision. That’s probably partly why I’m such an overthinker.
On Suicidal Thoughts and Self Harming Behaviour
I’ve been meaning to write a post about being passively suicidal for ages; I just haven’t had the time that I would want to dedicate to it, given how important it is. But I’ve definitely experienced this and continue to have phases of feeling this way, some that last for days and some that last for months.
The ‘no emotional skin’ leapt out at me immediately. I really relate to that. Sometimes everything is just so overwhelming and painful; it can all feel like just too much to cope with, to survive, to live a life that isn’t unbearably painful.
I’ve self harmed on and off since I was about thirteen. To be honest, I never really thought about it as self harm – not for a long time at least: I didn’t think of it as harm myself because that wasn’t the primary motivation for doing it. I did it (and sometimes still do it) when I got so overwhelmed, so full of feeling that I had to get it out of me. I didn’t know how I would survive if I didn’t do it; it was a coping mechanism, like a pressure valve that helped me regulate the intensity of my emotions. I’m obviously aware now that it is self harm but after much discussion with my therapist, we’re not worried about it on it’s own. If it’s a coping mechanism (and one that I use relatively rarely), then the best use of our time is working on helping me to regulate my emotions so I don’t need to do it rather than stop me from using the only coping mechanism I currently have.
Feeling Empty and Lonely A Lot of the Time
I can absolutely understand the feeling of emptiness; I relate to it a lot. Sometimes I wonder if the emotions in me and around me are just so big and so overwhelming that that part of my brain just shuts down to keep me from being constantly overwhelmed, to keep all the fuses in my brain from blowing. Maybe empty is safe. I don’t know. But ‘feeling empty’ is definitely something that resonates with me.
‘Everything is too much for me and yet it’s simultaneously never enough for me’ is a phrase that could sum up my relationship with my emotions. My emotions are so big that they’re overwhelming but they also don’t feel quite enough. I can’t really explain it; I don’t know if there are words for it. It’s so deeply emotional that I’m not sure it would translate. I guess it’s kind of like sucking in so much air you feel sick but none of it is actually getting to your lungs. Maybe? I think that’s the best analogy I’ve got. Right now, at least.
Getting Angry and Struggling to Control Anger
I don’t often get angry. I don’t think I ever even felt angry until I was twenty. I always just jumped straight to sad. So anger is a strange and confusing emotion for me. I only ever really let it out when in the midst of an autistic meltdown. As I’ve already talked about, I have a lot of fear around saying or doing the wrong thing and the chances of that happening, in the heat of an angry moment, make that a lot more likely to happen. Plus I really hate confrontation. I can do it but I hate it.
Paranoia, Psychotic Experiences, or Feeling Numb When Anxious
Fortunately, I’ve never experienced a psychotic episode and hopefully my mental health never reaches that point. They sound incredibly scary and I feel for anyone who has them.
I’ve definitely experienced periods of feeling like I’m not really here or like I’m really far away from everything and everyone, separated by something intangible but powerful. I’ve struggled to believe that I’m real and that the world is real. It’s confusing and difficult and lonely. I usually only experience it when I’m deeply depressed but it does appear on other occasions.
She talks about the stigma similarly to the way I described it at the top of this post but says that she wanted to share her experience with it in the hopes that it will help people and lessen that stigma. She also talks about the impact that her mental illness has had on her life: she’s studying for a degree at home because that’s the path most conducive to her mental health and that’s something she’s proud of because she’s still working to achieve the things she wants to achieve, even if she has to go about it in a less than traditional way.
“I really am working on structuring my life now; like how some people structure healthy eating in their lives and they think about what they’re gonna eat in their diet, I think about myself emotionally and giving myself time and all these kind of weird emotional things that I have to think about, like that. But yeah, having my diagnosis was a huge weight off my shoulders because it feels real and you feel very validated… And like I said, some people don’t like a diagnosis and that’s fine. That’s up to them but for me, it felt validating and I’m not ashamed of it. At all.”
Many of the things I’ve talked about personally are very much inline with Quiet BPD, a less well known presentation of the disorder – sometimes people don’t initially believe me when I say I have BPD because I don’t fit neatly into the classic presentation. I read about it before my diagnosis and after investigating it with my psychiatrist, it’s always been accepted that this is the form that my BPD takes. I really want to write a longer, more personal piece on BPD and on my experience of Quiet BPD but I just haven’t got the time at the moment, being in the home stretch of my Masters. It’s also something that I feel is so important to get right and I just haven’t felt like I’ve been in the right space to do it justice. But these days I do feel more confident in my experience and, maybe when the stress of the Masters is over, I’ll feel able to write that post.
Category: about me, anxiety, bpd, depression, diagnosis, emotions, favourites, identity, mental health, quotes, response, self harm, suicide, therapy, video Tagged: actuallyborderline, actuallybpd, borderline personality disorder, borderline personality disorder awareness month, bpd, bpd awareness month, claudia boleyn, emotionally unstable personality disorder, living with bpd, quiet borderline, quiet bpd, youtube video
Posted on April 2, 2021
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.)
And suddenly all of the pieces started to click together:
THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.
MY ASD AND HYPERMOBILITY ARE LINKED.
THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.
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.
Category: about me, adhd, anxiety, autism, bpd, chronic fatigue syndrome, depression, diagnosis, heds, mental health, ocd Tagged: actuallyautistic, adhd, anxiety, asd, attention deficit hyperactivity disorder, autism, autism awareness, autism awareness day, autism awareness week, autism spectrum disorder, autistic, autistic adult, borderline personality disorder, bpd, chronic fatigue, chronic fatigue syndrome, chronic pain, depression, diagnosis, diagnostic process, ehlers danlos syndrome, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, multiple diagnoses, myalgic encephalomyelitis, obsessive compulsive disorder, ocd, social anxiety, treatment resistant depression
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.