My Symptoms Are Gross and That’s Fine

White, curvy Morgan human shows off their gross broken skin

Bodies are incredible. They withstand all sorts of bullshit (some more than others), run in complicated and ingenious ways, and carry our consciousness from one place to another. In a lot of ways, even when I dislike how my body looks, I can sincerely appreciate all the things it does for me.

Or at least, most of the things. I naturally experience a lot of frustration with my brain, which seems to sit in my skull for the sole purpose of tormenting me. I therefore medicate my brain, and those meds have side-effects. Sometimes these side-effects are physically uncomfortable, like when I tried an antipsychotic which gave me severely restless legs. Sometimes, though, (like when I tried a different antipsychotic), these side-effects can be upsetting because they’re gross (like when I lactated all over my clothes).

There’s nothing inherently gross about lactation, obviously. It’s how most mammals have survived this long, and it can be a beautiful, meaningful way for a parent to interact with their child. However, if you are for example an insane twenty-something-year-old with a lot of baggage about kids and pregnancy, lactating is of little use, and instead is just a secretion that you have to work out how to manage, particularly because it’s a secretion which can begin to smell unappealing quite quickly (and of course, with my luck, this happened at the height of summer). Grossness is a very relative concept, but I have yet to find a human who thinks spoiled breast milk isn’t gross.

A “gross” symptom or side-effect might be gross to you, or the problem may be that other people will perceive it as gross. If it’s gross to you, like my lactating onto my clothes was to me, you live in discomfort, anxious that the gross thing will reoccur or worsen. It somewhat helps, in these situations, to hear from other people who have also dealt with this. I think the concept of grossness – or, maybe more accurately, the stigma and shame piled high around typical bodily functions – thrives on going mostly undiscussed, which is why I’m here to tell you about my leaky boobs.

I’m not stopping there, though. That’s an extremely straightforward physiological event – eat meds, lactation activates. Another, more complicated thing I suffer with is: my meds cause me hyperhidrosis, or excessive sweating. I’m embarrassed when I noticeably sweat onto any surface, and generally tend to feel like a dick for being a walking, dripping biohazard, even though realistically my sweat shouldn’t harbour any weird pathogens. More than that, though, I then have to deal with a symptom other people would consider gross, but which I mostly consider fucking painful: sweat rashes.

White, curvy Morgan human shows off their gross broken skin

This is going to maybe sound gross to y’all, but especially if I sleep or nap, I will wake up with a stinging either where my thigh meets my pubic area or underneath a boob (or both). If I just gently touch these areas, it seems as though my sweat has disintegrated the skin entirely, and said skin forms a sweaty sludge which I have to very gently wash away from the intact skin. These sweat rashes are made worse by my collagen-deficient skin being very prone to breaking (or seemingly just… melting away), which is not my fault, and by the fact that I only manage two showers a week at a maximum, which kinda is my fault. Showers are an incredible challenge for my autism, so I usually slather the cracked skin in Sudocrem and hope for the best.

The location of these sweat rashes is all the more cringe-inducing because I’m a sex blogger and a slut, and the presence of cracked, raw and melting skin makes me fear that interacting with my vulva or tits will be unpleasant. The irony is that I tend to shower more often when I’m more sexually active, so if I could get over myself and my melty skin enough to engage in some sex or kink with my long-term partners, at least, I could end up ameliorating the issue purely by accident. My Logic Brain seems to know that my partners will not be repulsed by my few patches of broken skin, but societal shame about sweating and not washing enough holds me back from feeling sexy, which in turn holds me back from engaging in play.

Another thing isn’t so much my body as it is my brain, but it manifests on my body – picking. Ripping skin from the soles of my feet, plucking and plucking at my mons pubis and chewing the inside of my mouth are only three ways that I seem to be constantly trying to whittle down my body, and they all leave red marks, broken skin, swelling and a general feeling of unsexiness. But, again, discussion of these things helps to take the stigma out of them, especially reasoned discussion with risk awareness in mind. People’s skin sheds naturally as they traverse the world, so to me skin-picking seems like less of biohazard than sneezing in a public space. (Correct me in the comments if I’m wrong – I am not a scientist of any kind.) Biting my mouth literally only affects me, so I think the main “gross”/unappealing factor of that one is that it induces a kind of sympathy pain reaction. (People might also be grossed out by me swallowing my own skin, but we eat the skins of mammals all the time.) Either way, here’s how it looks:

Regardless of why these things are seen as gross, the irony here is that feeling embarrassed, ashamed, guilty and anxious about your skin-picking is only going to prompt more picking, quickly turning into a vicious cycle.

There are other symptoms which I don’t experience, or only experience rarely, that are considered to be gross. I do struggle on the odd occasion with hyperfixating to the point that it affects my continence (specifically, my ability to notice I need to pee and get to the bathroom in time), but I don’t have a lot of experience with digestive symptoms – some people do, though, and are sharing their experiences in a neutral and shame-free way, which is exactly what’s needed to start shedding the shame and stigma attached to one’s body acting outside of one’s control. From there, we can focus more on making life with these symptoms comfortable and dignified.

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 💙