Finding HopeMental Health Awareness Week 2022
Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
Quotes That Helped Me (BPD Edition)
Posted on May 7, 2022
While I do want to share some more in-depth posts this month, I wanted to post a few different things since different things are helpful and interesting. So, for my first post of Borderline Personality Disorder Awareness Month, here are some quotes about BPD, ranging from scientific explanations to emotional descriptions.
“I’m so good at beginnings, but in the end I always seem to destroy everything, including myself.” –
“Accepting a psychiatric diagnosis is like a religious conversion. It’s an adjustment in cosmology, with all its accompanying high priests, sacred texts, and stories of religion. And I am, for better or worse, an instant convert.” –
“To a large degree, a particular collision of genes and temperament with a suboptimal or hostile environment may explain the development of borderline personality disorder.” – Dolores Mosquera
“Most of the time, BPD arises from complex trauma and attachment wounds in childhood, and the symptoms of BPD are just defence mechanisms that protect these old wounds. For example, a person with BPD frantically avoids abandonment by shapeshifting to become who others want them to be, instead of who they truly are. They may also over-identify with painful emotions in an attempt to get other people to show them love and attention because this is the only way they received it in the past. They sometimes self-sabotage because they have a deep sense of shame that causes them to believe that they will fail, be left by others, and they would rather these happen on their terms, rather than blindsiding them.” – Hailey Shafir
“It is important to remember that those who are experiencing Borderline Personality Disorder come from a background of perceived or real chaos, abandonment, and other trauma in their childhood. As a result, their internal dialogue usually consists of, ‘I am not worthy of love,’ ‘People I love will leave me,’ or ‘I can’t trust anyone.’ As a result, when these persons become adults, their internal dialogue affects every aspect of their lives but is especially amplified in relationships. They learned early on to trust chaos in their families of origin. Therefore, they don’t trust peaceful situations or healthy relationships. This is why people with BPD are known for being ‘needy,’ ‘dramatic,’ ‘troublemakers,’ etc. They are following their internalized dialogue and consequently creating the one thing they fear: being abandoned and alone.” – Keischa Pruden
“In the life cycle of an intense emotion, if it isn’t acted upon, it eventually peaks and then decreases. But as Dr. Linehan explains, people with BPD have a different physiological experience with this process because of three key biological vulnerabilities: First, we’re highly sensitive to emotional stimuli (meaning we experience social dynamics, the environment, and our own inner states with an acuteness similar to having exposed nerve endings). Second, we respond more intensely and much more quickly, than other people. And third, we don’t ‘come down’ from our emotions for a long time. Once the nerves have been touched, the sensations keep peaking. Shock waves of emotion that might pass through others in minutes keep cresting in us for hours, sometimes days.” –
“Owing to a poorly defined sense of self, people with BPD rely on others for their feelings of worth and emotional caretaking. So fearful are they of feeling alone that they may act in desperate ways that quite frequently bring about the very abandonment and rejection they’re trying to avoid.” – Kimberlee Roth
“To stave off the panic associated with the absence of a primary object, borderline patients frequently will impulsively engage in behaviors that numb the panic and establish contact with and control over some new object.” – Christine Ann Lawson
“I don’t know what it’s like to not have deep emotions, even when I feel nothing, I feel it completely.” – A. R. Asher
“Imagine all the strongest emotions you have ever felt in your life: anger, hopelessness, rage, embarrassment, regret, lust, fear… Imagine that most days you feel forced to experience all of those in quick succession. How might one react to this? Dissociation in order to escape? Self-harm to bring about a strong physical stimulus to briefly replace these emotions? Thoughts of suicide? Feelings of worthlessness or wondering ‘what is wrong with me?’ and ‘why am I not worthy of loving relationships?’ Feeling the need to quickly exit relationships before people find out the ‘real you’? Finding relief and closeness in intense but brief sexual encounters? Rapidly and repeatedly changing identity in order to find a way to escape? This is the heart of BPD and common reactions people suffering from BPD have to everyday situations.” – Dr. Nicolas Sikaczowski
“There weren’t as many layers between her and the world as there were with the rest of us.” –
“My skin is so thin that the innocent words of others burn holes right through me.” – Unknown
“People with BPD are like people with third degree burns over ninety percent of their bodies. Lacking emotional skin, they feel agony at the slightest touch or movement.” –
“A borderline suffers a kind of emotional hemophilia; [s]he lacks the clotting mechanism needed to moderate [his or her] spurts of feeling. Stimulate a passion, and the borderline emotionally bleeds to death.” –
“I’ve grown up with an ethic, call it a part, that insists I hide my pain at all costs. As I talk, I feel this pain leaking out – not just the core symptom of BPD, but all the years of being blamed or ignored for my condition, and all the years I’ve blamed others for how I am. It’s the pain of being told I was too needy even as I could never get the help I needed.” –
“I couldn’t trust my own emotions. Which emotional reactions were justified, if any? And which ones were tainted by the mental illness of BPD? I found myself fiercely guarding and limiting my emotional reactions, chastising myself for possible distortions and motivations. People who had known me years ago would barely recognise me now. I had become quiet and withdrawn in social settings, no longer the life of the party. After all, how could I know if my boisterous humour was spontaneous or just a borderline desire to be the centre of attention? I could no longer trust any of my heartfelt beliefs and opinions on politics, religion, or life. The debate queen had withered. I found myself looking at every single side of an issue unable to come to any conclusions for fear they might be tainted. My lifelong ability to be assertive had turned into a constant state of passivity.” –
“This crack in your façade can be the first glimpse you have had to your real self. Ironically, your newly experienced vulnerability – the feeling that you are now exposed for all the world to see, that your weaknesses are now visible – is the very thing that can save you.” – Merri Lisa Johnson
“Certainly, it’s important to acknowledge and identify the effects of BPD on your life. It’s equally important to realize that it neither dictates who you are nor fixes your destiny.” –
“I still get very high and very low in life. Daily. But I’ve finally accepted the fact that sensitive is just how I was made, that I don’t have to hide it and I don’t have to fix it. I’m not broken.” – Glennon Doyle Melton
These were surprisingly hard to find so if you know of any more, please let me know!
A Love and Hate Relationship with Autism Spectrum Disorder
Posted on March 30, 2022
Being autistic is complicated (to state the obvious). It’s never just one thing, in my experience at least. It’s not even one thing on one day, one thing in one moment. It’s good things and bad things all wrapped up together and while I can advocate and applaud ‘Autistic Pride,’ I’m not sure I’m there yet. But I can appreciate the good and the bad and so, considering it’s World Autism Acceptance Week, I thought I’d post something about just that: the good and the bad and learning to live with them…
Autism, as we know, is a neurobehavioural condition so the traits associated with it are right down in our wiring, just like the rest of our personality traits: being autistic is at the very core of us and everything else is built upon that foundation. There are some things about being autistic that mean a lot to me, things about myself that I love and value, including…
- A NEED FOR AUTHENTICITY – Obviously I can’t control whether or not other people act authentically but I need to be authentic. If I act differently to how I feel, it has a negative impact on my mental health and on my happiness. So, to be happy and mentally healthy, I have to act on how I feel and be who I really am and it’s in following that rule (for lack of a better word) that I’ve had the best experiences and created the things I’m most proud of. As I said, I can’t make that choice for other people but I do think that, on the whole, I get on better and make stronger connections with people who are authentic.
- PASSIONATE ABOUT THE THINGS THAT ARE IMPORTANT TO ME – If I love something, I love it with everything I have. I will fully immerse myself in said thing; I actually find it hard not to. That can sometimes make doing normal, day-to-day things hard because all I want to be doing is engaging with this thing I love but I’d rather love wholeheartedly than feel ambivalent about stuff.
- LOYALTY – When I care about somebody, I’m all in. I’ll do anything for my friends, sometimes to a pretty extreme degree: like, once I improvised travelling home from Nashville because my flight was cancelled and I’d promised a friend I’d be home for something or like, once I woke myself up every hour to check whether a friend who was in hospital had tried to get in touch because she was scared about being in hospital alone at night. Putting that much into a friendship or relationship does mean I’m more likely to get my heart broken (and it already has been) but like all of the things that matter to me, I’m never going to want to care less about people. I mean, on the bad days, sometimes I do – it would make life easier – but, as a person, I like that I care that much. It’s not always easy (or healthy) but overall, I always think it’s better to care more than less.
- STUBBORNNESS – I am stubborn as hell and sometimes it’s a pain; sometimes I can’t let things go even when I want to. But being stubborn has also gotten me through a lot of hard stuff and helped me make a lot of good stuff happen.
- IT GAVE ME PURPOSE – All I want to do is make the world a little bit better. That’s all I want. I hate seeing people unhappy or things not working so I’m always looking for ways to help and make things better but the world is a big place with lots of problems and it’s easy to feel overwhelmed and helpless. But finding out that I’m autistic, that gave me a place to start and the more I’ve learned, the more I want to help make being autistic an easier, less harmful, and ultimately better experience. And that’s what I’m trying to do, whether that’s with this blog, my music, or by trying to improve the accessibility and understanding wherever I go.
But there are also things about being autistic that I hate, that I struggle with, that cause me problems, and upset me deeply. I know it’s not healthy to focus on the difficult parts (unless you’re, for example, working on something specifically in therapy or counselling) but I do believe that acknowledging the negatives is important and validating. Endless positivity is not helpful and can end up being harmful so here are some of the things that I hate about being autistic…
- LACK OF INDEPENDENCE – With the sensory issues, fatigue, mental health problems, etc, my independence is severely hindered. And as hard as I work to improve my stamina and my mental health and so on, I don’t know how I’m ever going to be completely independent. If it’s even possible. The idea of living by myself is one that I can’t even really imagine ever being realised. And with that being such a standard rite of passage that holds such weight, it’s hard not to feel inadequate or broken.
- FEELING FROZEN – I still don’t really know how to describe this feeling and I can’t say for sure what caused it or when it kicked in but I feel very stuck, particularly in the developmental sense. I feel stuck somewhere between teenager and adult; I feel all the pressure of being an adult but I also feel incapable of doing a lot of the things that make it impossible to meet all of those expectations. All of the things that impede my independence come into play here too, like my lack of energy and my issues with pain. Just existing is an exhausting experience; living as everyone else does feels like an impossible dream.
- THE SENSORY DIFFICULTIES (WITH FOOD IN PARTICULAR) – Sometimes just being is really hard. Every light is too bright, every sound is too loud, every smell is overpowering, every fabric is itchy… and so on. It’s not like that everyday, at least not for me. But it is like that a lot. And most of the time, it makes doing normal things like eating, drinking, going about my day, etc, just that bit harder. I would love to not be phased by restaurants for example: to not worry about the fact that there’s probably nothing I can eat, or potentially even drink, apart from water (and even then it usually has lemon or lime or cucumber in it). Even small things feel so complicated. I’d love to be able to just meet a friend for coffee and that be that but between whatever we eat or drink, how loud it is, and all of the other sensory factors (and that’s not even thinking about all the sensory stuff involved in the travelling), it’s just exhausting. And I wish it wasn’t.
- THE RESULTING MENTAL HEALTH PROBLEMS – While we will never know for sure, I (and the mental health professionals that I trust and have worked with for years now) strongly suspect that many of the mental health issues I deal with, are at least partly down to being autistic, and specifically, being diagnosed as autistic so relatively late. Anxiety, depression, OCD, BPD, and ADHD are all comorbid to Autism. Maybe some of them would have developed on their own but I’m sure the Autism did not help and the amount of distress that these problems cause isn’t something I can easily put words to. Every day is a struggle because of them. Let’s leave it at that for now.
- THE LACK OF UNDERSTANDING, FROM EVERYONE (INCLUDING MEDICAL PROFESSIONALS) – Everywhere I go, I have to teach people about Autism, even the most basic stuff. From friends, to teachers, to doctors, even to people whose entire job revolves around accessibility. No one seems to know anything, or at least anything beyond the basic stereotypes. There’s almost no decent representation out in the world, in the media (which makes it very easy to feel alone and/or broken) – the vast majority of it is harmful. So many people still don’t even know that Autism manifests differently in girls. Autism is a complicated thing so I don’t mind helping people understand it, understand some of the nuance, but I hate how bad the general understanding is, especially when it’s people who should know better (when it’s part of their job, for example). This is why so many people are diagnosed so late and struggle so much: even the people who should have a working knowledge of Autism don’t and it’s really not good enough.
So, this was a bit more exposing than I’d expected when I started writing. But there it is. Almost a decade later and I’m still figuring out what it means, to me, to be autistic. It’s complicated and it’s hard and some days I’m really proud that this is who I am. I guess the goal is to have more of those days.
Finding Hope 