Posted in Advocacy, Mental Health

‘Bedlam’s’ True Horror History

Today’s post is the first that looks into the history of psychiatry and ‘treatments’ for the insane, mad, mentally ill and neurodivergent, through a brief overview of the history of Bethlem. I think it’s important to share and learn about this history because it helps us to better understand the foundations and influences on psychiatry nowadays, and therefore understand the problems and potential solutions within the mental health system, including abolitionist approaches. I hope you find this little guide to be informing, let me know if you have any questions in the comments! Just a quick trigger warning for psychiatric violence and restraints.

Bethlem Royal Hospital was one of the first lunatic asylums. It’s horrifying history has inspired lots of books, movies and TV shows, most notably Bedlam.

So the real life horror in its history should be evident, otherwise why would it inspire such horror stories? Yet often we don’t stop to wonder about such histories that informed modern day psychiatry. It’s important to learn about this stuff because the legacies can still be seen nowadays in abusive, neglectful, and ineffective systems.

Bethlem was originally founded in 1247, and was linked to the Church of Bethlehem. It’s foundations are muddied and muddled – it was first used to house alms and poor people with religious ties and with the aim to make money. This monetary trend is also something we still see nowadays in many areas of life, including in the mental health system and coupled pharmaceutical industry.

It’s not known exactly when Bethlem was first used for the insane but is frequently assumed that this was from 1377. Management was through ‘keeperships’, with essentially sole control. Jumping ahead a bit, during Sleford’s keepership at the hospital (1579-1598) the buildings fell into disrepair – ‘so loathsomly filthely kept not fit for any man to come into the house’

However, living conditions didn’t exactly improve. Into the 19th century many inmates were left to sleep on straw beds and only permitted to go the toilet in their cells. Simultaneously financial exploitation by head physicians was common from the 17th century onwards – they were getting rich while the people inside suffered. In fact, in the 17th century several patients were found to be suffering from starvation, and staff practices were found to be a significant contributing factor to this. Staff practices are often a main complaint by inpatients today as well – but they are far too frequently brushed aside; once you’ve been labelled as unstable it’s incredibly difficult to reclaim your power and have your concerns legitimised.

While it appears restraints and solitary confinement were used for the insane at Bethlem from the start (and still today!), not a lot is known about so-called ‘treatment’ in the medieval period. However from 1460 the transition to a specialist institution for the insane was mostly complete and more is known from then on. In the 1680s cold baths were introduced as a form of treatment, as were incredibly hot baths later. Patients were bled, blistered, then dosed with emetics (make you vomit) and laxatives indiscriminately during the 18th century.

Perhaps one of the most disturbing parts of Bethlem’s history is that from the 17th century onwards visitors could pay to come and gawk at patients like animals in a zoo. Can you imagine the shame and anxiety of having your distress put on show as amusement for others? How could anyone possibly heal in that environment? We can infer from this a part of the pattern of control and benefit from locking mad people away rather than a genuine care for them as individuals and a desire for them to heal.

There was even an ‘Incurables Division’ added 1725-1738; patients in here could never hope to leave. One approach was rotational therapy: a patient was put in a chair suspended from a ceiling and spun at sometimes more than 100 rotations a minute

Experimental (read: unsafe) treatments were also used on patients at Bethlem. Furthermore modern investigations have uncovered mass graves on the property, dug exclusively for those who died under care at Bethlem.

This barely scratches the surface of Bethlem’s horrifying history of abuse and exploitation. The hospital is still in use today and many patients are still voicing their pain and trauma from their time there – restraints are still used, as are forced medication, and mad voices are not respected. There’s even a museum of patient’s artwork there, and while some exalt this as them respecting the patient’s expression, I have to wonder to what degree is it a modern day version of gawking st misunderstood minds?

We may have come a long way, but there’s still a lot further needed to travel.

Sources:

https://www.huffpost.com/entry/bedlam-the-horrors-of-lon_b_9499118/amp

https://en.m.wikipedia.org/wiki/Bethlem_Royal_Hospital

Porter 2006, Whittaker 1947 

Porter 1997 

Andrews et al, 1997 

‘A view of Bethalem’ 4th December 1598, quoted in Allderidge 1979

Posted in Advocacy, Managing Mental Health, Mental Health, Personal Growth

Journey Through Panic Attacks

The first time I experienced a panic attack I was 11 years old. I had come home early from school that day with a headache and some other physical symptoms I now know were anxiety, and I had gone upstairs to have a nap before dinner. My mum came to wake me up when it was time to eat, but I must have been in the wrong phase of my sleep cycle because I awoke disoriented, thinking it was the morning. We’ve all been there when we wake up not quite sure what’s going on. So I thought it was the morning, and when my mum told me it was time to eat I responded asking about breakfast. There was some confused back and forth with my mum trying to convince me it was in fact dinner time, and still the day before, and I suddenly spiralled into my first panic attack. I don’t remember a whole lot of the details while it was happening, but I do remember how terrifying it was. I remember feeling like I couldn’t breathe; I simply could not get the air into my lungs. I felt faint, and sick, I thought my legs couldn’t hold me up. I don’t know if I had the thought that can come alongside panic attacks where you think you’re going to die, but I knew something was very, very wrong; I definitely thought I was going to faint. Somehow I ended up at the bottom of the stairs, gasping for air and sipping water out of a bottle cap (I think that was the only way I could manage to do it?) as it subsided, and I can still recall the exhaustion after that first one and how foreign it felt. My mum suggested it had been a panic attack, and at that point I didn’t know what that meant. I had no idea they would become such a huge part of my life. 

I have had many panic attacks since this day. I’ve also had some anxiety attacks, which are more prolonged and less intense, and I experience sensory overload too as an autistic young person. Sometimes sensory overload meltdowns and panic attacks can be hard for me to distinguish, and sometimes they overlap or morph into the other, but it’s helpful sometimes to figure out which is which as it can aid in the recovery process both long and short term – for example in a panic attack changing my jumper probably isn’t going to help and may not even be a possibility, but with sensory overload changing the material of my clothing or my environment may help it to subside or avoid it altogether when I feel it building. This year I have felt the strongest mentally overall that I have in a very long time, but I still have panic attacks. Some months I have none; others I have many. For example in May I had seven.

 It’s important to note that while I find the label panic attacks useful, it is a pathologised word. That means there is a certain medical connotation attached to it. However panic attacks are a total overload of our nervous systems; an explosion of tension and anxiety. We cannot talk about expressions of mental distress without recognising that they are often responses to a traumatic and stressful world, whether immediate results of a specific trigger or a build up over time. For example in May I was dealing with exam stress, difficult atmospheres at home, grief for my safe place, and more time on my hands. These all contributed to my spike in panic attacks I have no doubt. Other times I may make it to the other side of a stressful event and then experience panic attacks, almost like a hangover of emotions. It’s not an individual failure, but an understandable reaction to a difficult world. You are not broken for experiencing anxiety. You are not shameful for having panic attacks. 

I am a firm believer that to appreciate life fully we need to be able to laugh, even at the bad stuff. There are certain events surrounding some of my panic attacks that I find kind of hilarious looking back on and that helps me to deal with any embarrassment or regret surrounding them I may have. For example, I have terrible stage fright (despite being an actress, ironic I know). Before the final dress rehearsal for Bugsy Malone – my first show in a proper theatre – I had a panic attack in the wings. I was crouched behind a prop box in heels I could barely walk in and my tailored sparkly dress writhing my legs in pain and sobbing without air. It was a pretty desperate moment, though the juxtaposition itself is amusing looking back. The next thing I remember is a stagehand saying into their walkie talkie ‘can someone please come and remove the fire hazard from the wings?’. I was the fire hazard because I couldn’t move myself out of the way, and I was carried back to my dressing room by my director. Talk about a diva moment. Looking back I cannot help but laugh at the absurdity of the experience. 

That particular panic attack also showed me how loving people can be. I hope that someday everyone experiencing mental health issues gets to experience the pure love and support that I did that day. I had to go on stage just after recovering to do a mic check. I was so exhausted – my bones were heavy; the exhaustion of a panic attack travels to your core and can make you feel like your body isn’t your own – so all I could do was stand centre stage. The rest of the cast sat in the audience as I weakly sang ‘My Name is Tallulah’. Half way through the song I raised my eyes and saw that they were all swaying along, waving their hands in the air; at the end of the song they stood up and cheered and called out encouragement. It was beautiful. No one judged, no one whispered or pointed. They rallied and supported me. That’s what we all deserve. 

Another amusing panic memory was when I fell on my face in the mud on a rainy day trying to escape prying eyes and instead drawing them all to me; again, it wasn’t as embarrassing or well remembered as I feared it would be. Or when my teacher gave me their scarf to wrap around me and help me feel safer and I immediately snotted into it – I got to keep that for a while rather than immediately returning it. Or the time I went to get help while having a panic attack but there was already a girl in the office having a panic attack and it became like a queue for a very strange and unwanted product.

 I’ve been alone on bathroom floors, writhed my legs, hit my chest, backed myself into literal corners to try and feel a bit safer, thought I was going to die, taken off most of my clothes because I thought my skin was going to burn, and just general cried and made weird sounds while trying to breathe. Point of all of this is – I survived. And each one has become a little easier to recover from. The worst a panic attack will do is make you pass out; it cannot kill you. Remember that – it cannot kill you. If you are having one, it is horrible and tiring and painful, but you are safe. And if you are with someone experiencing one it’s ok to remind them of that; if you can recognise what it is and call it what it is. Tell them it’s a panic attack and that they are safe. Often it helps not to try and suppress it either but rather to ride it out, let it be. Because they are not the end of the world, but they are super scary and it’s ok to recognise that too. 

I hope that maybe reading this has helped someone feel a little less alone in their experience. If you’d like a more in depth guide on how I deal with my panic attacks let me know in the comments below! Sending love and support to you all today! Xx

Posted in Advocacy, Mental Health

Over Pathologisation of Mental Health

We hear a lot nowadays about removing the stigma from mental illness, and that is incredibly important. After all, we all have mental health. But I also I think it’s essential while advocating in mental health spaces that we not only call for destigmatisation, but we also question the systems; call out the injustices of the systems meant to care for us. We must question whether medicalisation of mental health really helps us. Would it be necessary if our society wasn’t structured the way it is in the west? Does it further the link between mental illness and criminalisation? Because destigmatising mental distress isn’t only recognising that it exists, it’s asking why it exists, is the language we use to describe mental illness helpful, what does healing really mean, and how are we failing to learn the lessons from our madness? So here are some of my musings on the over pathologisation of mental health:

It individualises our pain without individualising our care – that is to say it tells us we are broken, it is our individual chemistry that is flawed, and we are to blame, yet also not putting us at the forefront of understanding our pain and choosing how we heal. It tells us we are too sick to know what’s really good for us, or that we don’t know ourselves well enough. It doesn’t allow us to learn who we are and what’s really at the root of our pain; doesn’t encourage us to put it into a sociopolitical context, and the context of what has informed our life. Doesn’t allow us to heal with others.

There is no community. No value given to peer support, to healing with others who are experiencing the same things or similar things or completely different things, but feel safe to heal with. Doesn’t encourage the connections that are vital to long term healing and alternative methods of care. If you want proof that peer support methods of healing work, look at AA – it revolutionised care for alcoholics. What was a death sentence became an opportunity for hope and healing.

Our pain is shunned and labelled, pathologised. Instead of learning to embrace the madness as part of who we are, we learn shame which in turn births more pain. Instead of learning to see mental distress as a natural human reaction, however difficult, we learn to be afraid of it. Language that could be used to free us is instead weaponised against us to strip us of our wholeness and our identity through clinical rotes.

But it doesn’t have to be that way. I don’t have all the answers. I listen to psychiatric abolitionists and I think, yeah, they have the answer. I listen to amazing healers in other cultures outside of the west and am filled with inspiration and hope. Then I look back at the world as it is and wonder if we don’t need to adapt our goals to be a little more realistic within the current frame of society here in the UK. I don’t have the answer nor a clear label for my ideology surrounding this all. But I do have hope. And I do know things are already changing. 

We don’t have to wait to build communities. We don’t have to wait to create new ways of healing. We don’t have to wait to find hope. 

You can also find a version of this post on my Instagram @our.happy.notes

Posted in Advocacy, autism, Mental Health

Diagnosis – Good, Bad, or Dependant on the System?

Validation:

It can be very hard to access treatments and be validated by ‘professionals‘ within this system without a diagnosis. Budget issues and a mental health system based in oppression that seeks to produce productivity rather than healing and often doesn’t recognise its intrinsic links to all other aspects of capitalist society doesn’t help this. However, more importantly, without a diagnosis it can be hard to validate ourselves – to give ourselves permission to display certain symptoms, feel what we feel, and believe that it’s real.

Getting a diagnosis can be a validating and liberating experience for many people – my autism diagnosis certainly was for me. It helped me understand myself, put my entire life into context, and connect with other people going through similar experiences. That was incredibly useful with all my diagnoses – finding people going through the same thing and learning how they were managing in a world often not built for us which helped me find ways to define and facilitate my own healing. Community truly is a powerful force. It teaches us that we are not alone, and is one of the most invigorating tools in supporting mental health; my diagnoses are helping me find mine.

But we must ask the question – why do we lack validation without a diagnosis? Why have we not been taught validation and community by the systems surrounding us? If human experience was universally understood as fluid and acceptable, would we need diagnoses at all?

Stigma and Stereotyping:

However, diagnoses have also been used as oppressive tools throughout history, and being given a diagnosis can be a terrifying experience. For example women could be put into mental institutions if their husbands thought they weren’t living up to their duties and this was justified under the label of hysteria. Nowadays Black women are significantly more likely to be diagnosed with BPD – this may be a misdiagnosis of a neurodivergency (chronically under recognised in Black people) or due to how their traits and emotions are perceived so different within the system. Black people are also four times more likely to be detained under the Mental Health Act in the Uk – a hugely oppressive tool that twins criminal incarceration.

It may feel like a condemnation to receive a diagnosis due to preconceived notions of stigmatised mental illnesses, and lack of care options. Sometimes it can seem like a lifetime of suffering and inevitable failures lie ahead. It may even be harder to be taken seriously within the system – especially in psychiatry wards where any legitimate complaints can be brushed off as ‘symptoms’. Telling family and friends may elicit negative reactions due to their preconceived ideas, regardless of how positive the experience was for the individual

Stuck in a Box:

Although it can be liberating to understand your behaviour through the lens of a diagnoses, it can also be challenging when dealing with others and interpreting your own experience. It can be difficult to know where you start and where the illness ends, or to what extent you should view yourself as your illness. It can be difficult to know whether an emotional reaction is ‘natural’ or a symptom or a potential warning for future issues. It can be difficult to be heard and seen as anything but your diagnosis and your experiences as anything separate or unrelated to it by others.

Diagnosing a mental illness is not straight forward. No one person presents the same, and often two psychiatrists will have completely different opinions leading to misdiagnosis/ confusion for the individual trying to grapple with many opinions and find understanding.

And yet once given a diagnosis we are often stuck in a box or a more rigid understanding of who we are and how me must think and will behave. Does that seem logical? It doesn’t to me. But it’s understandable within a system that looks for easy processing, and profit – both achieved through the over medicalisation of human distress. 

When the DSM was first released in 1952 there were 102 diagnoses in it. By 2000 there were 365. This has since reduced again – but you can see how inexact and dramatic the medicalisation has been.

Nonetheless, getting a diagnosis, finding community and comfort it in, can be a very positive experience. My autism diagnosis certainly was for me, and being able to say I’m bipolar helps me feel whole and proud of everything I’ve been through. But getting those diagnoses, navigating conversations, therapy, and life with them has been challenging and complicated. And I am privileged in many ways. Bottom line – receiving a diagnosis is not something to be afraid of, and if your experience was good then that is amazing, and valid! But negative experiences are just as valid too. Perhaps even more so because they often fall on the more marginalised. And everyone’s emotions, pain, and trauma are valid with or without a label. We deserve a society that teaches us that.

Sources

  • Sedated: How modern capitalism created our mental health crisis by James Davies
  • verywellmind.com 
  • mind.org.uk
  • Phenomenology of Borderline Personality Disorder, The Role of Race and Socioeconomic Status, Natacha M. De Genna, PhD and Ulrike Feske, PhD
  • My brain
Posted in Advocacy, autism

Ugly Autism

As always when talking about autism, I want to remind everyone that autism is not a mental illness. It is a type of neurodivergency; this basically means as autistic people our brains think and process information differently to the ‘norm’ that is expected in the world. However autistic people are more likely to suffer with mental health issues, largely in part to the fact that we are living in a world that isn’t built for us. I’ve talked about an overview on autism acceptance before – which you can read here – but today I wanted to discuss the complexity of an autistic experience and how as more people get involved in autism acceptance and advocacy (which is an amazing thing that I am thrilled to see!) we must keep in mind the spectrum of experiences and therefore the complexity of the necessary solutions.

Sometimes my autism isn’t pretty. I can still fit into the world as I am expected to, but that comes with effort which often goes unseen or under-appreciated. I can do this reasonably easily compared to some, and this is in part due to other aspects of my identity (such as my race) and the supportive people who surround me. You can view this as lucky or not; I think in a way it is unfortunate. It’s unfortunate that I have to manipulate the very essence of the way I think in order to fit into systems I often have no desire to engage with in the first place. I think it’s unfortunate that we can even frame this as ‘lucky’ because that just points to how painful life is for those who can’t, and how this pain is worse than the struggle of concealing one’s true self. While I do frame my autism as my superpower sometimes, I do not believe in the rhetoric that it is a blessing – this also lends to the rhetoric that it could be a tragedy when in reality it just is what it is. I frame it as my superpower personally because that helps me cope with its challenges, and because being autistic is so central to my identity that embracing it in a society that often doesn’t is radically self loving for me. My mental health issues are not the same as me being autistic, but since autism affects how I process everything they are of course intertwined and I have no doubt that being autistic in a world that isn’t has been part of how bad my mental illness has gotten and how confusing it has been to understand. In particular I think my early experiences of mental health issues (before they developed into a clear mood disorder of their own) were heavily intertwined with my autistic experience.

So why am I telling you all this? To give you the smallest cross-section of just one person’s autistic experience, and the complexity of even trying to begin to comprehend that experience, so that you might begin to grasp how neurodivergency and the way it is approached by society is not something that can be easily defined or explained. And that is essentially the point of this post. There are more conversations happening around neurodivergency now then ever before – and that is a joyous and wonderful thing! But these conversations cannot be dulled down to a single Instagram post, or a single profile of autism – which threatens to be the most easily palatable representation of autism. Think of how mental health awareness is sometimes boiled down to self-care, bosses offering a free yoga class to their employees, and pity for the people who can’t socialise but can still just about get through a days work. This kind of awareness fails to recognise or help those suffering in ways that are uncomfortable for us to hear about, or impede how they might function in the systems they are expected to – it doesn’t help the person who has to take a year off work, nor the person who has to call an ambulance because they are convinced they’re dying, nor the person who lashes out at others with angry words because they can’t deal with their inner turmoil. I don’t want a similar pattern to happen as we see more autistic and neurodivergent awareness and representation. We can’t afford to ignore the messy parts of autism that might make some people a bit uncomfortable, or the fact that many neurodivergent people can’t (or don’t want to) participate in traditional capitalist structures that aren’t set up to support them. As there is more awareness, we must show the full array of autistic experiences – from all races, with comorbid mental health issues, different traits, physically disabled autistic people etc etc.

Autism and neurodivergency can’t become something trendy, like a new kind of personality test for CEOs to try and enhance their team and their diversity. They just need to become tolerated, known, understood. Because neurodivergency isn’t always palatable; sometimes it’s messy and it’s different and we have to make sure we don’t run the risk of autistic and adhd people who can more easily fit into the societal expectations (and who want to, because not everyone does) getting ahead and heralded as some liberal caring symbol for employers – for example, while others continue to be ignored. 

Posted in Advocacy, autism

A Guide to Autism Awareness Month (By an Autistic Girl)

April is autism awareness month, so you might well come across information floating around about autism online. For many autistic people, especially autistic advocates, can find this month difficult or have mixed feelings around it – not all the information circulating will be correct or portray a positive narrative, and this can be frustrating, stigmatising, and exhausting to correct. So here is a short guide on how to navigate autism awareness month for autistics and neurotypicals (people who do not have autism and are not neurodivergent) alike:

The Ground Rules

Firstly, let’s lay some ground rules for autism awareness month – the stuff you really should know. When you read something about autism online, do not automatically assume it’s true. If it’s written by an autistic person, then it’s generally trustworthy. If it shows autism as a problem to be fixed, or a desperate life, then it’s not to be listened to. And if it comes from ‘Autism Speaks’ then completely ignore it (more on that later). Next, make sure you are not correcting autistic people on their own experience, or trying to speak over them. Instead, uplift autistic voices – and all autistic voices. We are as diverse as the world, and we all have value, so make sure you’re paying attention to LBGTQ autistics, Black autistics, non-verbal autistics, autistics with higher support needs… all of us! Finally, don’t use the #actuallyautistic hashtag if you’re not autistic, it’s a hashtag we use to find each other and to identify posts by autistic people.

Acceptance not Awareness

While becoming more aware of the diversity and lived experience of autistic people is amazing, and helps to de-stigmatise autism, it’s not enough. Furthermore, sometimes the idea of awareness can become a connotation of a problem that needs to be solved or cured, which autism is not. So during this month, you may see it called ‘autism acceptance month’ instead. That’s because what autistic people really need is acceptance. More than that we need to be accommodated and valued in society, because every single one of has worth no matter where our traits lie on the spectrum, and when accommodated to we can do so much. So please, make sure that this month you are also thinking about and working on your acceptance and accommodation of autistic people. If you want to read more about why I think autism is amazing, please read my post ‘Autism is My Superpower’ here.

All Year Round

The fact is that autistic people are always autistic – all year round. That means that you cannot only work on accepting autistic people during the month of April. Including us, accommodating us, appreciating us and loving us is a full time job. And it’s important, maybe even paramount, to note that accepting autistic people isn’t just about accepting those who have a diagnosis or are public about that diagnosis. Many of us can’t be open with our diagnosis, or are uncomfortable about being open with it (which is why we need your help to de-stigmatise autism). Many people don’t even know they are autistic. So what does that mean for you? It means accepting the weird kid who only talks about the same few topics or can’t make eye contact, and saying hello to them, regardless of what response you might get. It means not laughing at the way in which someone flaps their hand or the odd noises they make. It’s about being sensitive to the person who finds light and sound overstimulating. It means accommodating the quiet girl, even when she can’t talk at all. It means caring.

No Autism Speaks

You may have heard/ hear about Autism Speaks’ light it up blue campaign, supposedly in support of autistic people. However autism speaks have been hugely damaging to the autism community, portraying autism as a thing that destroys lives and families, and something that needs to be solved. They also do not help autistic people in a financial sense – only a tiny portion of their budget (I believe 4%) actually goes towards autistic people and their families, while their CEO receives an obnoxious amount. Furthermore, not one person on their board actually has autism, which is an outrageous sign that they do not listen to us. So instead of lighting it up blue, please light it up red, a way we are combating Autism Speaks, and use the rainbow infinity symbol instead of the blue puzzle piece of this organisation.

A Guide for The Autistics

This month might get overwhelming for you, especially if you are trying to correct information online or advocate a lot. So this is my reminder for us to check in with ourselves and allow ourselves time to rest and do what we enjoy as well. If you are feeling worn out maybe reach out to someone who knows you well also and ask them for a bit of extra support. You are under no obligation to do anything this month if you don’t want to. And maybe while everyone else is working on their acceptance of us, we can also try to accept ourselves. It’s something we can struggle with as autistic people. But we are so valid, and honestly really awesome.

Thank you so much for reading. If you have any questions please do drop them in the comments, and feel free to get in contact. Sending all my love and support!

Posted in Advocacy, Mental Health

Overview on Eating Disorder Awareness

As someone who spent a long time struggling with disordered eating – and still continues to grapple with it – I know first hand that eating disorders, diet culture, body image and our relationship with food is so much more complicated than a few statistics. However I also know that de-stigmatisation of mental health starts with awareness, and that de-stigmatising mental illness saves lives and has the power to change communities. So for eating disorder awareness week here’s a short overview I put together on eating disorder awareness. Follow this blog for more in depth posts to come on this topic:

Eating Disorder Misconceptions:

Not everyone with an eating disorder;

… is skinny

… is underweight

… goes to hospital

… knows they have one

… gets diagnosed

… recovers

… is white

… is female

… has anorexia or bulimia

… is a teenager

… looks like they have one

… restricts or purges

… survives

… has body dysmorphia

Eating Disorder Facts:

⁃ Around 25% of those affected by an eating disorder are male

⁃ Only around 10% of people suffering with an eating disorder are anorexic

⁃ Eating disorders are not a choice or for attention – they are a mental illness

⁃ Research suggests that people that have a family member with an eating disorder are more likely to develop one

⁃ Black teenagers are 50% more likely to exhibit symptoms of bulimia than white teenagers

⁃ LGBTQ people are more likely to develop an eating disorder

⁃ Research suggests that up to 20% of autistic people exhibit traits of eating disorders, and while anorexia is the second least common eating disorder among non-autistic people it is the most common among autistic people

⁃ Approximately 1.25 million people in the U.K. have an eating disorder

⁃ Anorexia has the highest mentality rate of any psychiatric disorder

Types of Eating Disorders:

⁃ Anorexia Nervosa

Anorexia (or anorexia nervosa) is a serious mental illness where people lose a lot of weight due to restricting how much they eat and drink. They may develop “rules” around what they feel they can and cannot eat, as well as things like when and where they’ll eat, and around exercise. Anorexia can affect anyone not matter their age, gender, ethnicity or background.

⁃ ARFID

Avoidant restrictive food intake disorder, more commonly known as ARFID, is a condition characterised by someone avoiding certain foods or types of food. They may restrict overall intake of intake of certain foods, and have foods that they deal as “safe”.

⁃ Binge Eating Disorder

Binge eating disorder (BED) is a serious mental illness where people eat very large quantities of food while feeling like they are not in control or what they are doing. Evidence suggests it is more common than other eating disorders, and is often misunderstood.

⁃ Bulimia

People with bulimia feel caught in a cycle of eating large quantities of food (called bingeing), and then trying to compensate for that overeating by purging in some way. That may be vomiting, taking laxatives or diuretics, fasting, or exercising excessively.

⁃ OSFED

Anorexia, bulimia, and binge eating disorder are diagnosed using a list of expected behavioural, psychological, and physical symptoms, however sometimes a person’s symptoms don’t exactly fit the expected criteria for any of these three specific eating disorders. In that case, they might be diagnosed with an “other specified feeding or eating disorder” (OSFED).

Things not to say to someone with an eating disorder (or literally anyone for that matter)

⁃ Are you really going to eat all that?

⁃ That’s a meal not a snack!

⁃ You’re just attention seeking

⁃ You’re weak

⁃ Just eat more/less

⁃ Get over it

⁃ But you’re eating well, how can you have an eating disorder?

⁃ I could never starve myself, I wish I was as devoted as you

⁃ Why don’t you just stop throwing up?

⁃ What diet are you on?

⁃ You should just go on a diet

⁃ Pointing out their weight gain, weight loss, anything about their body or anyone else’s body; try to compliment people through things unrelated to appearance

Eating Disorder help

⁃ Recovery is completely possible; the worst day in recovery is better than a single day being ill

⁃ No one with an eating disorder has anything to be ashamed of; there are so many loving and supporting people out there ready to help

⁃ Asking for help is not weak; it is brave

⁃ If you are a family member or friend supporting someone with an eating disorder you deserve to be supported as well

⁃ You deserve to have a healthy, sustainable and accepting relationship with your body and food

-You are not alone

Goeree, Sovinsky, & Iorio, 2011; Beateatingdisorders.co.uk; Autism.org.uk; Health.com

Posted in Advocacy, autism, Personal Growth

Autism is My Superpower

I’m autistic. Having autism in a neurotypical world is not easy because generally the world isn’t built for us and proves to be confusing, but for anyone struggling with their diagnosis/ symptoms (and any neurotypicals unclear on the individual nature of autism) I want to make it clear that having autism isn’t a defect. Nor is it a mental illness. In fact, it can be a bonus in many situations, and when accommodated to autistic people can provide new perspectives and skills to the benefit of others. I, for one, like to think that my autism is my superpower, and this is my personal experience:

I learnt to ‘mask’ my autism – consciously learning how to act and react from other people’s behaviour; having to put effort into learning social rules that came naturally to others. Masking can be exhausting, so I know it’s essential that I take breaks and find time for myself, but like a superhero in a costume, it can also be powerful. How? Because my passion is theatre, and when I become the character I act out on stage, I am easily able to slip myself into their shoes – I know how they would behave and why. It comes effortless to me. The misconception is that autistic people are like robots and can only slot into certain careers. In reality we are varied like everyone else, and our uniqueness is incredible. We exist in every identity there is: every race, every gender, every sexuality, as parents and children. Our variety is often overlooked.

My increased sensory input is a key feature of my superpower. I observe more, hear more, taste more. This translates to a benefit in so many situations. You don’t know your train time? Don’t worry, I glanced at the board quickly and noticed it. You’re lost and don’t know the way back? Don’t worry, I spotted landmarks along the way, I know where we’re going. You’re trying to remember where you put your glasses? Never fear, I spotted them. And if we’re thinking about sound and music, my greater sensory input comes to my aid once again – that along with my ability to spot patterns as part of my autism, and my synaesthesia (which is far more prevalent among autistic people than the general population). When I hear a piece of music, it is alive to me. It is full of colour, I hear every layer of the rich instruments, and I can see the patterns the notes are forming. If I want to then play that piece on piano, I need only translate the pattern onto the keys – give me a bit of time and I can paint the picture I hear all by myself. This is my superpower. 

Not to mention the fact that I am quite simply neurodivergent. I think experience the world in a way that is different to ‘the norm’, or rather the majority. Why is this a feature of my superpower? Because I can come up with new ideas and perspectives that may have been overlooked or not thought of at all. In certain situations this can become the way I overcome challenges or help others to do so; in the right combination my divergent thinking could be innovative. Us autistic people have a place in this society, no matter where our traits lie on the spectrum, and if we are accommodated we may even be able to offer solutions, certainly valuable contributions at the least. 

Like a superhero may have an emblem, sign, or symbol, I have my stims. By stims I mean self stimulatory behaviour. Why is this so amazing? Well, it indicates to me how I am feeling (different stims, like tapping my fingers on my palm or twirling my ankle, correspond to different moods). Not only this, but should I start to feel an uncomfortable emotion, stimming freely can help calm me down. There’s a lot of people out there that don’t have something so simple in their toolbox, so this is powerful to me. It’s also such a pure form of expression, and can even help me release my creativity, tapping into my flow. Furthermore, my stims evolve over time – hitting my head morphed into covering my head and now I need only put on a hat to feel at home. How awesome is that? 

This barely scratches the surface of my positive autistic experience, but I hope it has enlightened you. Autism is not a bad thing – quite the opposite. And the beautiful part of it is that no one autistic person’s experience is the same as another. We have a place in this world, and we’re not going anywhere, so the more that neurotypicals begin to understand and help us meet our needs, the more we can give.

Posted in Advocacy, Mental Health

Reducing Mental Health Stigma

I have been fortunate that I have not personally come up against too much explicit stigma throughout my mental health journey so far – and when I have, there has been an incredible amount of supportive people surrounding me. However just a quick trip online reveals how much stigma still exists around mental health, and backhanded comments such as ‘just snap out of it’ or ‘you don’t look mentally ill’ are far too common. Sometimes I am afraid that I will be left out from job opportunities or educational experiences in the future because of my struggles. And so it is important to me, for my benefit and the benefit others, that I do what I can to reduce stigma in my advocacy. For me that means sharing my story, educating myself (especially on the intersectionality of mental health in society), and being open in conversation. Here is my quick guide on what anyone can do to reduce mental health stigma.

  1. Change your language

It might insignificant, but language holds power. What I mean by this is avoiding calling someone who is mentally ill ‘crazy’, and instead validating their experience. Another way to adapt our language is to avoiding using conditions as adjectives. For example instead of saying ‘I’m a bit OCD’ say ‘I like things to be tidy’, and instead of saying ‘She’s so bipolar’ say ‘she’s a bit moody today’. Changing our language can signify a shift in how we approach topics, and encourages us to be more mindful of how what we say can impact someone.

2. Educate yourself

Education is a powerful tool. Educate yourself on the warning signs of mental health issues, different conditions, and the reality of the lived experience of those struggling with their mental health (they’re not the dangerous, horrible people that some media may lead us to believe they are). And educate yourself on the fact that everyone has mental health, and everyone deserves to look after it. Furthermore, educate yourself on how mental health is intersectional with identity and social issues. Here is a post from my instagram that has some basic statistics on this.

3. Listen

When someone speaks up about their mental health, listen. Actively listen. Do not try to shut them down or tell them to toughen up. Listen to what they need and what they are experiencing.

4. Speak up

If someone says something ignorant in a conversation about mental health, try to gently educate them. If you are able to, speak up in your workplace or school to ask for better training for employees on mental health, and policies to support employees/ students.

5. Speak to power

Sign petitions that lobby for better and more inclusive mental health support nationwide and in our communities. Write an email to your MP (or other political representative) about improving mental health systems.

8. Support mental health charities

Whether this is by donating, sharing their campaigns, or engaging with their programmes, their work is so important.

7. Carry openness in your life

Include people in your workplace; continue to invite friends with mental health issues even if they don’t always come along. Treat everyone with dignity and respect, and offer them encouragement in their day to day life and when seeking professional support. Never blame anyone for their struggles. Be kind.

Thank you for taking the time to read this post. All of my love and support to you today,

Millie xx

Posted in Advocacy, Mental Health

Letters to my MP

This is the first of five letters to my MP regarding the mental health system, sent originally in May – it is not even worth me posting the others because they are all very repetitive following evasive responses. However I thought I would post this one as it gives a comprehensive overview of how I regard the mental health system in the U.K. and I’d like to say is a reasonably interesting read. If you’d like to read any of the others or responses please do get in touch.

Dear Mr ****,

My name is Millicent ****, I am 15 years old, and I am a resident of the **** district. I am writing to you today concerning the topic of the mental health system in the UK, particularly regarding young people. This is of great personal and nationwide importance since the mental health of citizens is an intersectional issue impacted by and impacting most aspects of society. You may be aware of many of my concerns already, however there is so much still to be done and these issues need highlighting, especially in the light of the Coronavirus pandemic which will no doubt influence the mental wellbeing of the population. I firmly believe that investment into the improvement of support in the UK will aid the return to life following this pandemic. I will also send a copy of this to you handwritten. It is my hope that you will take the time to read this email in full, as it is a comprehensive display of the complex problems within the system, and that it may open a discourse with you about what can be done to improve the system, and therefore society. Essentially – how will you, as an MP, push for change?

In this email I will cover:

– Personal experience

– Statistics and widespread perceptions of the system 

– The intersectionality of mental health 

– Issues with the diagnostic process 

– My questions about the system, what can be done, and ideas for what could be improved 

– Summary for your convenience 

In the last three years I have been diagnosed with high functioning autism, anxiety disorder, cyclothymia (a subtype of bipolar disorder) and disordered eating. To say I have struggled would be an understatement, and in terms of intervention from mental health services I have struggled alone. I only received these diagnoses after reaching breaking point, and through the private system funded by charity money after being consistently failed by CAHMS. Even then I faced long waiting lists and inadequate support. I will raise my concerns within the context of my own experience. 

When I was first referred to CAHMS I saw a counselor who I did not connect with; when I asked for a change of treatment, I was denied such. A year later – after a sharp downward turn in my mental health which meant I could no longer partake in a full school timetable – I was referred to the service once again. I had an initial assessment which left me confused, and they brushed aside my difficulties with my moods. I was offered group therapy, which intimidated me, and a check in with the eating disorders unit. I was not consulted about my treatment. After a panic attack in the office and a month of complaints I was offered CBT – but only 3 sessions; this is completely inadequate by any standards, including the NHS NICE guidelines, to make any change. When I raised concerns unrelated to my anxiety in these sessions, they were brushed aside as unimportant or not relevant to their unit. I was told by the eating disorder unit that I was ‘not light enough’ to qualify for in depth treatment – despite having lost a stone in the space of three weeks and being unable to eat more than five-hundred calories a day at the time. At the end of my CBT I was let go of by the service as they felt they had nothing more to offer me. I was told an ASD assessment would take eighteen months. Four months later I was struggling with suicidal tendencies, self harm, bulimia, and other issues. The overarching theme here is that I was continually told I was not ‘bad enough’ and by the time I was ‘bad enough’ I had no support systems in place. 

So my first questions are these: how can we change the system so that the needs of individuals are taken into consideration? How can we improve communication across units within the system so that the individual’s struggles are dealt with at all levels? How can we ensure that all the patient’s concerns are being taken into account, without ridicule? How can we create better measures to support people at all levels of the system, so that they always feel valid and the preventable outcomes do not occur, which often leaves people alone or the system overwhelmed? A simple answer would be funding – the system needs better funding to be able to cope with the influx of patients coming through, and approach each one with compassion. However this is not the singular solution, which I will come to later, and would require a shift in the focus of government by essentially making clear that it puts the wellbeing of its citizens first, and is not afraid to invest in long term solutions and improvements. 

I am not alone in my experience – a quick survey on my Instagram provided me with several answers, all of which backed up my perceptions of the system; I have heard conversations about the same problems repeated over and over again. Here are just a handful of responses from my Instagram: 

‘I’m sure mental health problems could be caught and helped earlier with better funding’ 

‘Mental health services for young people are woefully underfunded’ 

‘I’d say more funding for counselor programmes as there are massive waiting lists for them’ 

‘Private services are so dear, and many slip through the net because they can’t access help in time’  

‘Not enough work is done to prevent mental health problems and when there is a crisis, the systems are not properly equipped to deal with them’ 

In terms of statistics, the Community Mental Health survey 2019 by the Quality Care Commission reports ‘many of those areas identified as in need of improvement in 2018 have declined further, continuing the negative trend of results consistently declining over the 2014 – 2019 period’. This follows the publication of the government’s ambitions in the Next Steps on the Five Year Forward View (2017) and the NHS Long Term Plan (2019). As reported by the charity Mind, this weekend also marked 18 months since the Mental Health Act review – and we are still waiting for the government to make vital changes. Some key statistics from the survey are: 

– 31% of all respondents said they did not know who to contact out of office hours within the NHS if they had a crisis 

– One in five respondents that did know who to contact, and had done so in the last twelve months, reported they did not receive the help they needed during a crisis 

– Less than half (42%) of respondents said they had ‘definitely’ seen NHS mental health services enough for their needs. This is five percentage points lower than 2014 

– Almost a quarter of people (23%) were not involved in agreeing their care with NHS mental health services.

– Only 52%, of those who agreed their care, felt they were involved as much as they wanted to be in that process

– 29% of people had not had a formal meeting with anyone from the NHS mental health services to discuss how their care is working in the last year 

This barely scratches the surface of the 92 page report, which shows quality of care throughout to be below expectations and satisfaction, and many of these issues may also be exaggerated further within CAHMS which presents the challenge of dealing with those under 18. I think you can agree this is simply not good enough. 

While I am on statistics, here is an introduction to why the mental health of the country is important: 

– Approximately one in four people in the UK will experience a mental health problem each year (Mental Health Network, NHS confederation, 2016) 

– In the UK and the Republic of Ireland there were 6895 suicides in 2018, a 10.9% increase (Samaritans). That is 6895 lives lost, futures lost, family and friends in mourning 

– The rate of suicide among under 25s increased by 23.7% in 2018 (Samaritans) 

– The rate of suicide in the last quarter of 2019 hit a 19-year high, at 11.4 deaths per 100,000 people (ONS)

– Mental ill health is responsible for 72 million working days lost each year and costs £34.9 billion each year (Thriving at work: The independent review of Mental Health and Employers, 2017, Stephen D, Farmerson P), although some other reputable studies reckon this to be as high at £74-99 billion (Business in the community, Mental Health at Work 2019: Time to Take Ownership)

– One in eight 5 to 19 year olds had a mental disorder in 2017 (Government Statistical Service) 

The figures above are just that – numbers. However they represent the pain of millions of people each year, the tragic loss of life; the prevalence and therefore importance of mental health issues. We all have mental health; at any time we could be forced to rely on the system, therefore we must ensure it is properly equipped to support us, and allow us to return as functioning and contributing members of society. In the last three months three of my friends have attempted suicide. Thankfully they are all still alive today, but as they were all already involved in the system before this and had been failed by it invariably, I also live in fear for them, and others – like myself – grappling with mental health issues. This affects all of us. 

The main support I received for my mental health came from my school, simply because I was lucky enough to have understanding and empathetic teachers who always looked out for me. They kept me safe during manic episodes, kept me going during depressive episodes, and constantly took it upon themselves to educate themselves and offer me suggestions. However the level of care which they gave to me was not required of them, nor should it have been, and they are not professionals in the field. As the majority of young people spend most of their time in schools, however, it has highlighted to me the important role that schools play in supporting students’ mental wellbeing.  Furthermore, stress is well known to have a negative effect on mental health, and the stress placed on students in competitive atmospheres only increases as they move up the educational system: how can we alleviate some of the pressure on students and make it part of the curriculum to provide them with coping skills? This is one example of how in improving the NHS system, we must also involve coordination across other aspects of society that support the wellbeing of our citizens.

I know that my teachers were unsure who to contact when I had a mixed episode (undiagnosed at the time) which left them bewildered and in fear for my safety. In improving the system we must raise awareness, and education is key to this as it allows us to reach so many young people. How can we ensure that teachers – all teachers – are trained to recognise early warning signs, and create a structure that would mean they are aware how to approach with empathy, knowing what their next steps would be? Within schools, how can we promote the tolerance and awareness of mental wellbeing in a dynamic, informed manner that fosters compassion? Perhaps required teacher training and reforms in PSHE would be a good place to start, alongside establishing schemes of referral and counselling in educational settings. However, we must also recognise the impact that a teacher’s role may be having on their mental health, and therefore I suggest that it should be the norm that educators are offered easily accessible support to help them, which would not only allow them to offer better assistance, but would also make them better teachers. Mental health is an intersectional issue that requires a multifaceted approach; I hope you will appreciate this, and start formulating ideas on how we can put this into practice. 

Again I reference some quotes from my Instagram survey:

– ‘More investment in mental health training for teachers’ 

– ‘Talks for young people. They feel too’

– ‘Primary schools need to be more aware of mental health in my opinion’ 

– ‘Education beyond anxiety and depression because nothing else is talked about’

In terms of intersectionality, there are also clear trends among different demographics which should be addressed in formulating a plan for improvement. For example, the current protests have brought to my attention the disparities faced by BME communities in receiving mental health treatment: 

– Risk of psychosis in Black Caribbean groups is estimated to be nearly seven times higher than in the White population (Mental Health statistics for England, Briefing paper 6988, Baker C., 2018)

– Detention rates under the Mental Health act during 2017/2018 were four times higher for people in the ‘Black’ or ‘Black British’ groups than those in the ‘White’ group (NHS, Mental Health Act Statistics, Annual report 2017-2018)

– 29% of Black/ Black British women experienced a common mental disorder in the past week, higher than for White British women or Other White women (NHS, Adult Psychiatric Morbidity Survey) 

Once again this only scratches the surface, but the trend is clear. Research suggests that racism can have a very negative effect on overall health and mental health, and as BME communities are often more likely to be economically disadvantaged – and mental health issues more prevalent among lower income communities –  this is sure to have an effect on these figures. Therefore in facing the problems with the system, we must also look to where we can alleviate stress elsewhere, by educating young people through schools and the wider population through schemes about racism and how to be anti-racist; by aiding those economically disadvantaged and perhaps putting further funding into the services in areas with lower average income; by actively reversing racism and increasing understanding of issues faced by BME people within the service. However, it matters what is then done with this funding as well – there should be clear cut structures that direct where the funding should be applied. For example – community programmes, hiring more nurses and psychologists, further research into the effects of medication and disorders, training/ encouraging the training of the next generation of mental health workers, improving training structures to implement the values of NICE that should already be put in place. We need to not only pledge to look into it, fund it, but also how the process should be guided, surely? 

I could delve further into the intersectionality of mental health among LGBT+ communities (more susceptible), disabled people and their access needs, the workplace – but I feel by now you have gotten the picture. To finish I will cover the topic of diagnostic issues. 

The process of my autism diagnosis was fraught since I was being assessed under a criteria developed based upon the experience of white males of a certain economic background. This is the case for the diagnosis of many disorders, for which the criteria is based upon outdated research of particular demographics. How can we work to reverse this and therefore provide a smoother process for all by being represented in research? Not only that, but I found that without a diagnosis, my concerns were brushed aside as ‘just a teenager thing’. Yet the diagnostic system is not clear on what should or should not be diagnosed in teens, so my diagnoses were almost impossible to achieve, and still I was left feeling that regardless of labels I should have been validated anyway. I then found that after each diagnosis, there was a definite lack of explanation to me and guidance on my next steps. 

The end goal of psychiatry shouldn’t be diagnosis; all aspects of a person should be taken into account; those receiving such should be provided with clear understanding and guidance. Diagnosis also raises the issue of stigma in society – we are still afraid of labels, and yet invalidated without them. As already shown, mental health problems are so prevalent in our society that the very idea of them being a ‘disorder’ is arguably wrong and very damaging, causing divides where there needs to be acceptance and compassion. What can we do about this? There is a clear gap in the understanding around mental health that needs to be closed, which again brings me to the topic of education, and a supportive system at all levels so that the patient feels their individual needs are being heard and the preventable outcomes do not occur. Could research and community schemes help to bridge this gap? 

From my Instagram survey:

-’They don’t do enough for people who have only recently been diagnosed with mental health and therefore it allows their mental health to get worse’

-’It’s important because young people’s lives are being ruined by lack of access and explanations’

– ‘STOP TELLING PEOPLE IT’S JUST HORMONES/ A TEEN THING it’s not helping anyone!’

Mr Holloway I thank you deeply for taking the time to read this email. I hope that you will understand the importance of what I am writing about and receive these points with an open mind. I look forward to receiving your reply. You are a leader, and I trust that there is the possibility for tangible change in opening discourse with you. In conclusion:

  • How can we improve communication across the mental health system and other sectors? 
  • How can we use funding to improve the system?
  • How can we address individual needs?
  • How can we address the intersections of this issue to create a better society?
  • How can we improve the mental health system in conjunction with improving the educational system?
  • How can research help to overcome issues, and how do we ensure action is taken from it?
  • How do we overcome issues with diagnosis and stigma?
  • What can you do to lead this change?

If you would like me to clarify any points or forward my sources please do not hesitate to ask, 

Kind Regards, 

Millicent