The Basics: What Is BPD?

Blue and purple text box which reads "The Basics: What is BPD?"

Content note: Unfortunately, (and as no surprise to people with BPD and their loved ones), this post discusses suicide, abuse and ableism. If any of those are hard for you, I promise that your mental wellbeing is more important than my website stats. Go and find some cat videos 💙


Welcome to The Basics, a series in which I outline a concept that comes up a lot in my work! This time, we’re looking at Borderline Personality Disorder (also known as Emotionally Unstable Personality Disorder) – what it is, how it affects a person’s life, and what might help them. This article refers to “people with BPD” rather than “BPD sufferers” or similar, because I think the emphasis on suffering is unhelpful and because we are people. My personal opinions on whether it’s truly a personality disorder, versus a subtype of PTSD or a neurotype all of its own, are less than relevant here, but if significant new information comes to light along those lines you can expect an update to this post.

I was almost angry when I first learned about BPD, in that indignant way that you’re angry when you discover a resource that you had previously never heard of, sitting right in front of you. A while before I was formally diagnosed, I was already using BPD in my vocabulary and exploring how it might explain particular events scattered throughout my childhood. It explained so much, in fact, that I was formally diagnosed, and started writing a little more about having BPD.

BPD affects your mood, the way that you process and tolerate emotional distress, the way that you conduct your relationships and your self-perception. That’s a lot of things, so let’s start with the emotional bit. Sometimes I call my BPD “Big Emotions Disorder”, or “Tinkerbell Syndrome” in reference to the fairy in Peter Pan who can only feel one, extremely intense emotion at the time. These big emotions can cloud my judgement, especially when it comes to interpersonal interaction, and can escalate into an acute crisis very quickly. One problem with BPD is that our distress is so intense and specific that it can look very different to neurotypical distress, sometimes looking performative and thus not being believed – but we often are in that much distress, at least, and assuming otherwise is one of the reasons that people with BPD die by suicide at a rate of around 10%; for comparison, the Samaritans put the suicide rate of the general UK population at 10.0 per 100,000, or 0.01%

The relationship side of BPD is obviously impacted by the emotional side of it. BPD usually features an intense fear of abandonment and feelings of dependence on our loved ones, and our attachment styles can lead to clinginess and avoidance, sometimes both within the same person, same relationship and same hour. Relationships with a person who has BPD can often feature a lot of reassurance that you aren’t going to leave, as well as supporting the person when they have their characteristic Big Emotions. This can be taxing, especially when communication isn’t great, the person with BPD doesn’t know how to ask for reassurance (or even that that’s what they need), the person with BPD doesn’t take responsibility for their behaviour during times of Big Emotion, etc. Much like with the rest of the disorder, any stumbling block in the department of relationships is magnified so as to be almost insurmountable, so people with BPD report losing treasured relationships as well as ending up in terrible ones.

There is an argument to be made that entering terrible relationships, much like impulsive risky sex, drug use and dyeing one’s hair bright colours, is a self-sabotaging behaviour that we engage in because of our poor and typically unstable self-image. I personally think there is also an element of talented abusers finding and grooming people with BPD because we are likely to be grateful for the attention, eager to change and to please, and less supported by friends, family and professionals. Regardless, I’ve found in research and in my personal life that people with BPD are more likely to be abused in our interpersonal relationships than the general population, which is also more likely to do significant harm since we’re so sensitive to begin with.

(I also have to wonder whether dyeing one’s hair is definitely a response to unstable self-image, or whether it is sometimes done all or in part because of a desire to feel in control of one’s body and/or to make a statement. This is especially possible because there is an overlap between marginalised groups who dye their hair to be subversive, such as us gays, and people who are traumatised, what with trauma having known links to the development of BPD and all.)

Risk-taking behaviours are a real problem for people with BPD, and it can sometimes be hard to find the distinctions between deliberate risk-taking, altered perception of risk, and risks taken due to a feeling of passive suicidality. Personally, I’ve tried to obstruct a number of the risks I take, accidentally or on purpose, with things like a Blue Badge that stops me from wandering across car parks, and the deletion of Tinder from my phone. My experience with kink has given me, I think, a pretty good understanding of my ever-changing risk appetite and which risks I can take safely if I so need. I have to urge patience if there’s someone with BPD in your life taking risks that alarm you, especially because I know that sometimes I’m more likely to take risks if I have been specifically warned against them (there’s that avoidance coming through again). I also want you to trust that the adults in your life with BPD definitely are adults who can make adult decisions, and who will probably ask you if they need your help in managing their risk-taking. 

Personality disorders in general are heavily stigmatised, and this is especially true of what are sometimes called Cluster B personality disorders, like Antisocial Personality Disorder, Narcissistic Personality Disorder and Borderline Personality Disorder. I like to refer to Cluster A as “Cluster Your Problem” and Cluster B “Cluster Other People’s Problem”, because that does seem to be where the demarcation lies. BPD is among the disorders most vilified and misunderstood by the public, but I am here to tell you that there’s no personality disorder that makes you an inherently bad (or good) person – it’s your behaviour that dictates that. 

By the way, I’m going to insist on calling it BPD, instead of EUPD, or Emotionally Unstable Personality Disorder. There are a lot of reasons for this (including my inability to resist jokes about my European Union Personality Disorder), but my main one is that I think EUPD is misleading in two senses. The first is that it conveys that this is a primarily emotional disorder, which in turn conveys that it is perhaps less serious than other disorders, when in fact those emotions are a result of brain chemical activity just as in other mental health problems, and can be so intense as to lead to psychosis (delusions and hallucinations). The second is that it suggests a person with BPD is doomed to a life of emotional instability, which I don’t believe, having felt and witnessed the improvements that appropriate interventions can make. This doesn’t just mislead people who have BPD, rendering them desperately hopeless, but it also seems to mislead the public and professionals into thinking that severe emotional instability, and particularly distress, is so inevitable in people with BPD that it isn’t worth addressing in the way it would be addressed in anyone else.

This is not just a paranoid hunch I have; multiple articles point to a need for more research into BPD and how to treat its symptoms. Disorders aren’t chronically under-researched for no reason; funding goes to certain causes over others, which sucks because those other causes are usually also deserving of the funds. However, BPD isn’t as appealing or relatable to the public as disorders like depression, partly because of the very visible and vocal ways it presents. I also have to wonder whether it would get more research funding if it weren’t for the fact that “women present to services more often than men” (their cissexist language, not mine) and the related fact that we live in a patriarchal hellscape. Nonetheless, we don’t need research to approach people with BPD with the empathy and dignity that we deserve. It’s beyond time to stop treating BPD as Tantrum Disorder and start treating it like the complex constellation of traits and symptoms that it is – a disorder that can and does kill people. This dismissive attitude kills people.

In summary:

  • BPD is a disorder which acutely affects your relationships, your emotional state, your risk-taking behaviours and various aspects of your functioning
  • We are at high risk of harming ourselves but we are not fundamentally evil people bent on harming others
  • BPD is dismissed by professionals at an alarming rate, but the distress we’re communicating is legitimate
  • Helping people with BPD is the same as helping any other individual, but it will sincerely help us to elevate our voices and educate the public and professionals about the reality, and seriousness, of the condition
  • We need a lot more research on BPD, which you can also help to campaign for
  • If you have BPD and this post exhausted you emotionally, you’re not on your own. And if it helps at all, here is a photo of my cat:

My black-and-white cat on a blue-and-purple background, lying on his back with his legs spread wide. He learned this from me.

 

Carerfication (A Word I Just Made Up)

Stock image of a disabled parking bay with the title Carerfication (A Word I just Made Up) overlaid on it

Carerfication is a word that I have coined, and it refers to the process by which individuals are forced into a carer role for a disabled loved one, by societal pressures/expectations as well as by other individuals in their lives. I needed a word that was specific to this experience; we have “parentification”, which is a useful piece of vocabulary for discussing specifically childhood experiences and a parent/child dynamic, and we have “adultification”, which again refers to children but this time specifically Black children who are expected to grow up faster than their white peers. These are incredibly useful words, but they don’t cover the whole picture of what I’m trying to convey with “carerfication”. 

Recently, someone I love very much was hospitalised with suicidal ideation, and held for less than 72 hours before being released back to us. On the day they wanted to release my loved one, I stormed into the hospital reception to beg someone, anyone to keep my person in longer, because we had no idea how we were going to keep them safe. I wound up on the phone, in tears and sitting on the pavement outside, because they wouldn’t budge – they insisted my person would be better off “in the community”, which might have been true a few hundred years ago when our communities were bigger than about five close friends and family members. As it stands, my person’s housemate and I were shitting ourselves when my person came home. 

Every argument I made for my person to stay in hospital was met with a steadfast insistence that my person needed to be in the community, and when I raised the issue of keeping my person away from their daily meds for their own safety, I was reassured that “their housemate can be in charge of that”. Their housemate is a warm, caring, diligent person whom I respect very much, but she’s also not a trained healthcare worker in any sense. I don’t actually know what the legalities are of us confiscating my person’s property, let alone physically restraining them like we’d had to on the day they were hospitalised. We certainly don’t have the right or the means to drug my person in the way that, you know, a hospital or something might be able to do.

This whole debacle disappointed me, but it didn’t shock me. I’d been met with “can your [loved one] look after you?”, “can you partner do it for you?” and variations upon “we don’t have the resources to look after you” throughout my own journey with the NHS. I want to pause here to mention that I think the NHS is an incredible body that does incredible things, and its purposeful underfunding is designed to erode confidence in it as a body. This means that even though I love the NHS to bits, I’m forced to consider things like private psychotherapy in order to have a hope in hell of receiving the care I need, but I’m not happy about it. One obvious way to alleviate this problem is to fund the NHS adequately, so that it doesn’t have to fob its responsibilities off onto members of the public.

In the UK, if you receive Carer’s Allowance (which is predicated on a whole host of things and which is unavailable to full-time students) you are paid £69.70 a week. To earn this princely sum, you have to be acting as a carer for at least 35 hours a week. The mathematically gifted among you may have already spotted that this amounts to just under £2 an hour, a mere fraction of the UK minimum wage which is set at £9.50 in 2022. Not only is that disgusting, but almost all carers end up putting in a lot more than that 35 hours, particularly if you live together. Let’s imagine that you get 9 restful hours of sleep a night, but your every waking moment is spent with, around or thinking about your disabled loved one, attending to their needs and supervising them. That means that you’re putting in about 105 hours a week, and your Carer’s Allowance comes out at £0.66/hour. I can hear you thinking, “Well, it wouldn’t be fair to pay them the same amount as professional carers, who’ve undergone training and have experience,” which I can kind of understand – but personally, I think that carers of loved ones are faced with a harder task, since they typically have zero training and experience and a great deal more emotional involvement. I can’t tell you what I think would be a fair wage for carers of loved ones, because frankly I don’t think there’s a fair way to wrangle someone into the role of “carer” and I don’t think it’s fair on disabled people to plug the gaps in their care with their own friends and family. 

Most of my firsthand experience with carerfication comes from the world of mental health treatment, for obvious reasons, but I’ve noticed it with physical disabilities, too. The fact that my partner can drive seems to negate the fact that I cannot, nor can I safely navigate public transit 100% of the time – so she’s expected to be my carer by way of driving me anywhere at any time, and that’s considered enough freedom of movement for me (even though there’s every possibility that she’s controlling or, I dunno, busy with her own life). She helps me phone the GP surgery because they don’t have a non-phone option for anxious bitches with auditory processing issues (like myself). Any practical thing that you can imagine being made more difficult by anxiety, trauma, joint pain or hypermobility is supposed to be done or helped with by my partner, or by my mum and friends when she isn’t around. This works for me, for now, because I’m in a relationship that is not controlling (and it doesn’t hurt that my partner has a healthcare background).

That last part is key. I firmly believe that inappropriate carerfication of other people in a disabled person’s life can hand their power and autonomy straight to an abuser, and makes us all more susceptible to physical, emotional, sexual and/or financial abuse.  When the care you need is constant and complex, like my person coming home from hospital, your power can be handed over to multiple people (you know, because we’re not professional carers and therefore have other things going on), which only increases the chances of one or more people taking advantage of this. Random members of the public are not only expected, but are actively encouraged to take control of disabled people’s medications, communication with their healthcare provider(s), means of leaving the house (“get your housemate to hide his keys” is not an appropriate response to “I want to walk into traffic,” just FYI), finances, any other admin, etc. It does not take a domestic violence expert to see how this could become a near-inescapable problem.

Even when this transfer of power is agreed upon and the carer in question is never going to be a dick about it, it can feel demeaning and shitty that someone who has another role in your life is forced to act as your carer. I’ve already ranted about dignity on here, but I really believe that that, more than independence, is the key here. The answer is not to force disabled people to conform to some idea of “independent” that not even every abled adult can reach; it’s to fund health and social care services and to provide disabled people with adequate care, from professionals who 1. are trained, 2. have multiple levels of oversight, 3. are supported themselves through Occupational Health, 4. are being paid fairly and 5. are able to go the fuck home after eight hours and forget about other people’s crises. When you expect friends and family to act as carers, you expect them to deal with a whole host of emotions including fear, sympathy, frustration and helplessness, as well as expecting non-emotional labour from them like running errands, household tasks etc. This can do a few things: it can make the disabled party feel guilty that their loved one is being pushed into this position; it can make the disabled party feel grossly undignified, especially where a loved one has to deal with physical things like helping with the toilet, medical devices etc.; and it can alter the relationships disabled people can form with their loved ones, since they will almost all include this wonky, undignified power dynamic to some extent. It’s really hard to have sex with the same person who has just helped wash your pee-soaked trousers, for example, so sexual and romantic relationships always take place in the context of an uphill battle to feel safe, grown-up and attractive – and again, this is not a problem that needs to exist. I understand that fully-trained carers don’t just fall out of the sky, but millions of pounds (it’s hard to pin down exact figures and they often come from dubious sources) are spent just on feeding MPs every year (whose salaries, by the way, are £84,144/year, or about 10 times the amount that you get to live on through Student Finance), and millions more on other pointless bullshit. I refuse to believe the money isn’t there, but the willingness definitely isn’t, especially while the government can so cheaply replace actual carers with members of the public. The dignity and needs of disabled people need to be prioritised over cash, as do the needs and feelings of people caring for their loved ones. All this blog post really aimed to do was introduce y’all to the word “carerfication” and explain why I think it’s its own problem, separate from phenomena like parentification and adultification (although definitely compounded by them – as a white person I’m not sure I can speak to the adultification part in too much detail, but in my experience, the normalisation of throwing caring responsibilities at people who are not prepared for them logically leads to the parentification of children and especially children of disabled adults). I don’t have all the answers, but I feel like this is an aspect of being disabled that we don’t yet have enough vocabulary for, so “carerfication” is my contribution.


PS: Among all my personal chaos, I recently had the opportunity to talk to Aria Vega on POV by Lustery, and I would love for y’all to check out my episode as well as, frankly, every episode – it’s a brilliant podcast 💙

How Can I Help Autistic People?

title of post, "How Can I Help Autistic People?"

If you’ve clicked on this blog post on purpose, congratulations! You have already taken the first and most important two steps to help autistic people: 1. Give a shit, 2. Listen to autistic people about their own experiences. You would be surprised how many people fall at the first hurdle, so I want to genuinely thank you for giving a shit – with the caveat that it’s a pretty low bar, and you shouldn’t expect to be thanked or ego-stroked for simply exhibiting decent human behaviour, especially by autistic individuals in your life who have plenty of other shit to be dealing with. Step 3 is probably, “Let go of the notion that you can learn a set of steps and instantly become the perfect ally to autistic people.”

If the question is, “How can I help autistic people as a community?” then the answer is reasonably straightforward: do as you (hopefully) would with any other marginalised community. This includes amplifying our voices instead of adding or centring your own, sharing educational resources, especially among your friends who are also not members of this community, speaking up in defense of our basic human rights and dignity even if we aren’t there to witness it, etc. I know that “straightforward” does not mean “easy”, but let that giving-a-shit fuel you to continually put in the work of educating and advocating.

If the question is, “How can I help autistic individuals in my life?” then the answer becomes a great deal more complicated. Like other humans, no two autistic people are exactly alike, and our needs and problems are as varied as we are. Our most visible problems are meltdowns (moments of responding to intense distress by way of crying, shouting, rocking etc) and shutdowns (responding to intense distress by withdrawing, becoming quieter and often unable to perform basic tasks), so we’ll start there.

My number one biggest tip here is to ask the autistic person what they need from you during a meltdown, at a time they are not distressed. Regardless of whether or not you’re actually able to extract the information you’re looking for, it will be easier for the autistic person to give you a thorough overview of what’s going on for them in a moment of relative calm (e.g. instead of asking more than once in the midst of all the supermarket noise, “What’s wrong? What do you need?” during a meltdown or shutdown, wait until you’re back in the car and the person has got their vape to ask, “Hey, I noticed you were struggling in Tesco. For future reference, what’s the most helpful thing I can do when you’re going through that?”). Mid-meltdown communication is hard, and I personally find it easier to answer closed, yes/no or this/that questions than anything less specific about what my needs are – for example, the only response you’ll get to, “What do you want to eat?” will be confused wailing, whereas I’m more able to answer “Would you like chicken or fish? Do you want ketchup?” with either words or nods/head-shakes. I also find it frustrating to be pressed when the only answer I have is “I don’t know,” and if I don’t know now I won’t know the third time you ask (even if it seems odd to you that I don’t know how cold I am, or whether I need to pee), so I can imagine that other autistic people would prefer you accept their first answer unless they volunteer another one. And if this isn’t obvious, please don’t touch a distressed autistic person (or, really, any autistic person) without their express permission, unless it is absolutely necessary to keep them safe. Sometimes I would benefit from a big, intense, squishy hug, but other times my fight-or-flight response is already on the brink of starting, and to touch me uninvited would not only intensify that, but bring with it the fear that the “fight” bit will render me a danger to you. Again, yes/no questions help so it’s totally reasonable to ask, “Is it okay if I touch you?” before you commence that soothing bear hug.

But autistic people aren’t melting/shutting down through every waking moment of their lives, so how can you be of help in a non-meltdown, day-to-day sort of way? Well, again, every autistic person is different and has different needs, so you do need to actually talk to the autists in your life to figure out what help you could offer them. However, I will say that a majority of autistic people struggle with atypical sensory perception, so asking whether your speech is an okay volume, whether the room is too warm, when it’s okay to initiate touch, etc. are all good starting points which will grant your autistic friend permission to voice their sensory needs. The same is true of communication – some autistic people might benefit from you adding line breaks into your longer messages, being able to look at your face and lipread as you speak, etc., and obviously improving your communication with one another will also help you gain a clearer picture of other ways you can be helpful.

You can also be helpful in just… regular ways that you would help anybody else. Autistic people expend a lot more energy than our allistic counterparts on things like sensory processing, masking our symptoms, interpreting social signals etc., and that leaves us with less energy for every element of day-to-day living. If you want to help a particular autistic individual through a rough time, I cannot overstate how much difference practical help can make – do your friend’s dishes! Help them make phone calls! Tidy their front room! Only do these things with the person’s permission, because autistic people are sometimes sensitive to people entering our space and touching our stuff but also because it’s the polite thing to do in this context. (I would encourage you to approach autistic people with politeness even when it seems we don’t fully understand the rules of politeness or their significance, because we can often still perceive when we’re being treated differently and because, again, we’re human people.) If you can’t do these things because of distance or Covid or your own disability, but you want to help monetarily, I’m inclined to suggest that donating to individuals’ emergency fundraisers and buying your autistic friend a takeaway is a better use of your money than pouring it into an organisaton, since a majority of autism-focused organisations do problematic shit and do not materially help autistic people in any way (google “Autism Speaks” if you’re ready to be horrified), but again, you can ask your friend what they would prefer. 

I’m sorry that the core of this post is simply, “Ask us!”, but there really isn’t any better advice – I could make a million suggestions to a single autistic person and their support system, but as soon as we’re looking at the autistic population as a whole, the variability of presentations and of humans makes it impossible to issue more specific advice. I hope this post has at least helped you know how to ask us, and reassured you that it’s okay not to know instantly how to be helpful in every situation. If you want to read more from me on autism, click here, and if not, thank you for reading and I’ll see y’all soon!