Posted in autism, Personal Growth

Guide for Autistic Travellers

This summer I embarked on a two month solo trip around Europe as a female identifying autistic teenager – and it was wonderful. It was made even more wonderful by the fact that some of it was awful (I see the bad moments as adding more depth to the whole experience). So I thought that from my experience I would make a little guide to travelling for my fellow autistic people! Firstly a little disclaimer – this post is based on my experience travelling in Europe during the summer months; there may be information that does not apply to travelling at different times or different areas of the world. Also not every autistic person’s experience of the world will align with mine, so please find the information you find relevant and feel free to ignore the rest. With that being said, here’s my tips:

In London, ready to embark on the journey

Consider Your Companions

Personally, I find social interaction to be draining, especially when in unfamiliar situations. I am also pretty independent, so for me doing the majority of this trip on my own was the best option as it meant I could go at my own pace and organise my own days without having to balance that with someone else. However, I did have my moments of overwhelm and difficulties so it was really important that I had people (notably my parents and sponsor) on standby who I could call to help me in those moments. 

There is a lot to think about when travelling and a lot of new environments to deal with. It’s worth considering whether you think you will be able to handle this on your own or whether you would get more out of the experience by having someone with you to help manage this. If you do need someone, remember that is totally acceptable! It’s about getting the best experience for you. However I would recommend thinking carefully about who you bring. It needs to be someone you are comfortable being around for long periods of time and who you are comfortable expressing emotions around (as there will almost certainly be emotional moments along the way). 

If you are like me and think that you would prefer to travel alone, but also want to have some shared memories along the way, you could always invite a friend or family member to come and join you at one location. This is what I did and it worked really well. It meant I got to explore a few places with someone, but our time together was limited and we didn’t have to manage lots of travelling (and so scheduling) together. It made those experiences feel more special for me personally. 

Do whatever feels right for you – but take some time to consider this in particular as it’s one of the most impactful parts of travelling.

A la playa en Barcelona

Sensory Considerations

Something I underestimated before this trip was the variation of sensory experiences in different places. It is completely manageable, but it might have been helpful for me to be more aware of it before. Firstly, travelling in the summer months meant it was often really sunny. Before this trip I actually didn’t think I was an autistic person that was affected by light very much – but I soon realised I most definitely was (and that’s a really helpful thing to know now!). I think because I was in a new place, my sensory reactions were sometimes more sensitive, so that’s why I’m really glad I got a pair of good sunglasses before I went. I wore them everywhere and they made everything so much more pleasant. So I would recommend investing in a pair of good sunglasses (and if you wear prescription, possibly getting a back up pair) before going travelling. 

Next up is smells – different cities have different smells. This was both very surprising and not surprising at all. I got more used to it as the trip progressed but in the first few cities it was definitely on my mind a lot. If you are someone that gets affected by smells I would recommend bringing some essential oils you like to smell or even getting a nose plug of some kind for travelling as it’s a part of new cities that can’t really be avoided. 

Likewise, every city had different sounds. I had my airpods with me the whole time and had a podcast or music playing every time I was out and about to help me manage this. I actually spent a while beating myself up over this, thinking I wasn’t being ‘present’ enough simply because I couldn’t live up to the idea that in order to be present in a museum, for example, I had to stand there in silence while footsteps echoed around me. So my note here is for the autistic people who need controlled sound playing to engage with the world – that is totally ok! Whatever you need to make the most of your experience is totally ok! I also had my loop earplugs with me for when I wanted to take in some of the city noise but not be overwhelmed. This kind of earplug is really good because you can get different kinds to filter out different levels of sound to suit you. Considering bring ear defenders could also be really useful for dealing with sound. 

Next for sensory issues is a bit of an odd one – pillows. I stayed in a lot of different hotels and hostels and I can say that without a doubt the thing that varies most between them all was their pillows. I had no idea this would affect me, but it did. So if you think different kinds, shapes and heights of pillows could be weird for you, please consider bringing your own. I packed really lightly but if I had to recommend one larger thing to bring it would be a pillow; even a blow up one that you are used to the feeling of. 

Finally, consider the clothes you bring. I know personally I only really wear clothes that have a comfortable texture and feel for me. However when I was travelling I found it even more important than usual that I was wearing comfortable clothes, especially in the heat. I also found that with so much other information and choices in a day, choosing an outfit was much easier when the majority were variations of the same outfit. For example – I had four different tops that were all the same but different colours to match with four different pairs of cycling shorts that were all the same but different colours. I just found that really helpful.

In a space pod for the night!

Accommodation Choices

It’s really tempting while travelling to choose a shared room in a hostel because it’s the cheapest option, or because you feel like that’s what you should be doing for the ‘travelling experience’. This is your reminder to always, always choose what’s best for you and not what’s the easiest option or what you feel you’re meant to do. For the majority of my trip I had my own room and it was 100% the right option for me. I needed that space that I could retreat to and reflect in and not feel like I was ‘on’ all the time. I got single rooms in hotels, air b&b etc mainly because this was often a lot cheaper than getting a single room in a hostel. However if you want to also have the option of more social events and interaction then getting a single room in a hostel would be a great compromise if you’re someone like me that also needs their own space!

 I did stay in hostels for a few nights, and I’m glad to have had that experience, but I found it much more draining so I’m also glad I didn’t do it for the whole trip, and had my own room immediately afterwards. It was 100% worth the little bit of extra money to have my own room. Whatever you decide I’d just recommend you look into it carefully, read all the reviews, and be clear on what you need.

Next up on my accomodation advice is to book in advance. It might sound fun being spontaneous and just booking in when you get somewhere, but if you are travelling in summer like I was this is not only expensive but can be nerve wracking when everywhere is sold out. If you have your accommodation booked in advance it’s just one less thing you have to think about at the time, which might not seem like a big deal right now, but when you’re faced with travel tiredness and some other issue to solve, it’s a huge relief to have the basics sorted. I used booking.com’s app for nearly all my bookings so they were all in one place and easy to sort through; plus it meant I only had to get used to one interface. 

Finally, in terms of food – if you’re worried about the unpredictability of food at all then I would recommend finding places to stay that have facilities for you to make your own food. This also helps save money when you’re on a budget.

At Teufelsburg, Berlin

Where To Visit

Again, when choosing where to visit (both in terms of places and what to do in those places) don’t be swayed by what you feel you should be doing. I didn’t go to a single club or bar while travelling and I do not feel like I missed out at all, because I was happy with what I was doing. 

In terms of places I personally found Venice very overwhelming in the summer with the large volume of people in small streets. Turin on the other hand was a beautiful, small Italian city that was quiet in the summer. Look into what kind of vibe you want and what places are like at particular times of the year (I much prefer visiting Rome in the winter for example). Guide books and the many travel blogs online will often be able to give you recommendations for quieter or less busy places to visit as well if too many people are overwhelming (Teufelsburg in Berlin was truly amazing). Basically – travelling is a personal thing. Make personal choices. 

I found travel days to be the most draining, and although easier because it was planned, there was a level of getting used to each place once I arrived. If you think having to adjust to several different places in a short period would mean that you enjoyed them less, then consider staying in each place for more extended periods of time. That way you can settle in and explore each location at your own pace. 

Finally, if you have a diagnosis and are in receipt of any official disability support (DSA, PIP etc) then take proof of this with you because loads of attractions give reduced or even free entry! I saved €70 in Barcelona in a single day so it really is worth it. You can also get someone else free with you at a lot of places! Disneyland in particular had amazing disability support for free – I got a pass that meant I could skip queues with up to 4 people and had my own place to stand for the parades. It really meant I could enjoy the day. But it’s not just big attractions like that – churches, museums, tours etc often have disability reductions.

At Prague Castle

General Advice

  • Bring a portable charger and keep it charged 
  • Have emergency cash 
  • Have a small across body bag to put valuables in 
  • Get medical insurance – GET MEDICAL INSURANCE 
  • There are shops everywhere – you can buy what you need, so don’t panic if you forget anything
  • Have key contacts and information written down, including your hotel addresses and a photocopy of your ID kept separate to the original
  • Print off a card with ‘i’m autistic’ in different languages if this makes you feel better 
  • Have more underwear than you think you need
  • Bring a water bottle and remember to stay hydrated – it’s often the basic stuff we forget first 
  • Take breaks if you need to and only do as much as you want to. You got this!! 

If you have any questions or extra tips please let me know below! Love and support to you all xx

Posted in Managing Mental Health, Mental Health, positivity

5 Books on My Mental Health Journey

I’ve always loved reading, so today I wanted to share with you 5 books that have been incredibly important to me in my mental health journey as a teenager dealing with mental illness. Let me know what books have been impactful in your journey in the comments below – I would love to hear about them!

  1. The Princess Diarist by Carrie Fisher 

This book isn’t actually specific to mental illness, but it introduced me to Carrie Fisher – an incredible Bipolar disorder and addiction advocate – and that changed my life. 

When I found this book I felt very alone and unseen, but reading this was like seeing my brain laid out on a page. Someone else thought like I did, felt like I did. I’ve gone on to read all of her other books which range from entertaining to informative. And they are all hilarious. Carrie Fisher’s ability to turn a phrase is totally unique and unrivalled. 

  1. Unbearable Lightness: A Story of Loss and Gain by Portia de Rossi 

When I finally realised I had problems with food and restriction, I was struggling to wrap my head around it. This book helped me understand the severity of what was going on, and again made me feel less alone. It also helped me to understand the way I thought about food was not normal or healthy and how much it was hurting me, because I got to see it from an outside perspective.

I will warn that the details in this book are potentially very triggering and not necessarily helpful to those grappling with disordered eating, so a warning there if you are considering reading it. 

  1. Sedated: How Modern Capitalism Created Our Mental Health Crisis by James Davies 

This book was important to me as I started to be a bit more sceptical and analytical of the major narrative on mental health and the mental health system. I’ve had my fair share of unhelpful and downright damaging interactions with the psychiatric complex, and I started to question how we view, understand, and categorise mental distress, but it’s hard to find any research or information out there that even slightly criticises the accepted narrative. This book not only verbalised new ways to consider these issues but also provided evidence and further studies to explore. Of course, I don’t blindly accept everything in this book either – that would be counterproductive. But it was a huge relief to discover it and really helped me form a foundation for reimagining how we consider mental health and mental health systems within the wider social context of a capitalistic society. 

  1. 4.48 Psychosis by Sarah Kane 

This is actually a play not a book but I’ve only ever read the full script, not seen it performed, though my class did perform extracts as part of coursework, which was another interesting experience. 

In late February/ March 2020 I was experiencing my first mixed episode and it was truly overwhelming and terrifying. Sitting at my teacher’s desk in the drama studio I was scribbling something resembling poetry across several sheets of paper and one of my drama teachers caught a glimpse. They had been doing a truly incredible job of looking after me (something way above their pay grade) but I think by this point they were at a loss for what to do or how to help me process what was happening to me. 

However, upon seeing what I was writing this teacher remarked how it reminded her of Sarah Kane’s work. My teachers had a debate over whether to show me the play or not – after all it’s true it could have definitely triggered me further – but without much else to do, they gave it to me and told me to read it and come up with ideas of how it might be staged (a tactic that provided me a task to complete which was very helpful). 

I read the play and it was the first time in days that I felt anything close to calm or focused. The disorganised, brutal admissions of a mentally ill mind came to life around me and made perfect sense while the world around me seemed to make less and less sense. 

It made me feel seen in ways I had never experienced before, and also helped me realise that creativity doesn’t have to be neat nor does it have to conform to people’s sensibilities. My expression is mine alone and it can be as raw as I choose. 

I will say please use discretion if you’re going to read this and perhaps have someone on stand-by in case it affects you because it is very raw and cuts to the point of pain in a way I don’t think many of us are used to. Also I’d provide a trigger warning for pretty much everything for this one, but especially for self harm, psychiatric trauma, and suicide. 

  1. People, Places, and Things by Duncan Macmillan

Again, this is not actually a book but a play (can you tell theatre is my passion yet?) and I’ve never seen it performed. Emma – the leading lady – is my absolute dream role. 

This is basically a play about a woman’s journey through rehab and addiction into recovery, and I discovered it while still in active addiction but while I was still in denial. I related so much to her and her words; it helped me come to terms with my own addiction. And it gave me hope for recovery. 

Like 4.48 Psychosis some of the lines feel so deeply true it was almost jarring. And the innovation of the structure along with how it could be staged filled me with ideas and excitement for theatre all over again.

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 Managing Mental Health, Mental Health, positivity

Identity in Mental Illness

As an autistic person with mental illnesses sometimes it can be hard to figure out who I am.

If you have diagnoses you might feel like you have to split up parts of yourself and your actions into boxes, like this part of you is autism and that part of you is anxiety, for example.

Or you might feel like your whole identity is your diagnoses.

Even without a diagnosis you might feel like parts of you are defined by the way you feel, split up and separate.

This can make us feel like we have to be ashamed of these parts of ourselves or like we are not really whole. It can be confusing to know who we are and find our identity in the midst of it all.

Then you add in other identity factors like sexuality, gender, and race which in many cases can complicate our mental health and understanding of ourselves even further – especially because it impacts how others see us, and this is even more prevalent for minority identities.

Rather than trying to see ourselves as a selection of different parts and separate ourselves into these parts, maybe we can start to think of it more like colours blended together and filters on the image of who we are.

Like my anxiety is red and it bleeds into my passion for theatre which is blue. They mix to create a purple in the middle, and that’s where stage fright lives. But all the colours are a part of me, blending together to make me who I am.

And my autism is a filter with a yellow tinge and that does affect how I view and interact with the whole world, but it isn’t my whole identity, nor is it separate to every other part of me. They all work together in different ways to make me who I am.

At the end of the day, you don’t have to have everything figured out about your life and who you are. No one does. It’s a journey and an ongoing process which can be really scary to think about. But it’s actually pretty amazing, all these colours that make up the rainbow of you, changing and growing each day. Remember – no one but you gets to define who you are; your identity is personal and you don’t owe it to anyone else, nor do you need to define who you are! 

But you are wonderfully unique, allowed to take up space, and your rainbow is so much more than you could ever imagine.

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 Happy Notes, Managing Mental Health, Mental Health, Personal Growth

An Anxious Experience

Today’s post is a guest post written by Eya, a follower of Our Happy Notes on Instagram (their username: @the_dangerous_me). It was edited by Millie Bevan, founder of Our Happy Notes. If you would like to collaborate please email ourhappynotes@gmail.com or fill out the contact form on the website.

Anxiety can be a very physical experience where you can’t understand what’s happening to your body.  It’s hard to rationalise; it feels like your hormones have gone into overdrive. And really they have – being afraid or nervous is your body and brain’s way of telling you that there is danger nearby, so you may think at first that the feeling will pass, but anxiety means your brain sees danger everywhere. It doesn’t pass so easily. 

Anxiety is a silent killer. It kills your soul, it cuts you to pieces. Consider yourself as a game to anxiety because it makes you feel like a doll which it plays with. You can’t sleep at night and you constantly question what the people around you might be thinking, getting stuck in a loop with these thoughts going round and round in your head, replaying everything you’ve said and done. I have experienced anxiety since I was 13 years old when I started to lose sleep andi cried at night and i suffered. I felt so alone and it was a dark time in my life. I lost friends, became isolated, and soon started to experience depression as well. But there is  hope. I went to a therapist and day by day I felt better. Anxiety is not a topic to be taken lightly. It can make life so difficult. But you are not alone and you can look after your mental health. Eventually, with patience, it gets better.

There’s a lot of love out there and people that care. You can learn to love yourself again; know that there’s nothing that could stop you from your dreams and achievements. Nowadays I feel so much better, so I want to pass that hope onto you so you can enjoy everyday for yourself. 

Posted in Happy Notes, positivity

50 Compliments That Are Not Appearance Based

I know personally that it can feel a bit awkward to give or receive compliments, the protocol on when to compliment someone and how to react is a bit confusing to me. But I also like to imagine a society in which complimenting people was a more normal thing to do; where being open about how we feel (including our positive feelings towards others – complimenting them) was encouraged and normalised. However much of the time when we do compliment people it is appearance based. This is difficult because it can sometimes reduce someone to their appearance, which they don’t always have control over, and looks past who they are as a person and what they mean in our lives – especially when it’s to do with their body and not the way they dress (something they may use as a form of expression) for example. So I’ve put together a list of 50 compliments and open statements that are not appearance based. My challenge to you is to compliment at least one person a day for the next week on something other than their appearance. Let me know how it goes and any other ideas for compliments in the comments below!

  1. You make me smile 
  2. You’re funny 
  3. You make me happy 
  4. You’re kind 
  5. You make me feel safe 
  6. You glow 
  7. Your sensitivity is so strong 
  8. I appreciate you 
  9. You inspire me 
  10. You’re so strong 
  11. I admire your work ethic 
  12. You mean a lot to me 
  13. I love your honesty 
  14. You have a great mindset 
  15. You’re so brave
  16. You’re so loving 
  17. You’re are worthy 
  18. I am comfortable around you 
  19. You did great today 
  20. You are a warm person 
  21. You’re so understanding 
  22. You are a good listener 
  23. You are really insightful 
  24. You always care 
  25. You’re wonderfully unique 
  26. You are perfect exactly as you are 
  27. I wish more people were like you 
  28. I respect you 
  29. I trust you 
  30. I’m so happy you’re in my life 
  31. You’ve flourished as a person 
  32. You make a difference 
  33. You’re becoming even more amazing – and I didn’t think that was possible
  34. Your personality lights up the room 
  35. You deserve good things 
  36. You’re great at giving advice 
  37. I love how passionate you are about (blank)
  38. I love your imagination 
  39. You matter to me
  40. I love being around you 
  41. I love how confident you are 
  42. You make people feel important 
  43. I respect your integrity 
  44. You are a generous person
  45. You’re have an open heart 
  46. You are on your perfect path 
  47. I’m proud of you 
  48. Your ideas/ beliefs matter 
  49. Your happiness is infectious 
  50. You are a great leader
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.