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.

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!