So I have this thing called a touch phobia…

Touch phobia is also rather unhelpfully known by the following names: haphephobia, aphephobia, haphophobia, hapnophobia, haptephobia, haptophobia, thixophobia and just ‘fear of being touched.’ I call it a ‘touch phobia,’ and that works for me.

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Well, the name works for me, not the phobia. The phobia is a son of a bitch. And anyone who has it probably knows just how awful it can be.

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I’m lucky, I don’t have a truly severe version. My phobia has never made me throw up. I can sit in the passenger seat in the front of a car when someone else is driving (though it makes me feel trapped, and sometimes I’ve had to get out of cars or ask that they stop). I can shop in shopping centres, and I can even handle hugging some people hello and goodbye.

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The list of things I can’t do, right now, because of the phobia, is long and winding. From not being able to stand next to people on a crowded bus, to not being able to handle people walking behind me when I’m sitting down.

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For many of us, and certainly me, touch burns like fire, is intensely aggravating, or – as I like to describe it – ‘feels like sandpaper vigorously rubbing against the *inside* of my skin.’ You would think, because of that, I hate touch and don’t want it in my life, but you’d be wrong. I like the idea of touch (though I can’t imagine it too explicitly, or I trigger the phobia even when no one’s around). I crave touch. Pre-touch phobia, I used to be a physically affectionate person.

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I’ve tried different ways of dealing with this. I’ve talked to several therapists, I’ve even seen a sex therapist in the hopes that she’d come across a case like mine before (she hadn’t; the downside to finding experienced therapists in a small town). I’ve done research online and come across a whole bunch of bogus, generic, ‘I can fix your X phobia with this video/tape/cassette/aluminium hat, for X amount of dollars!’

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I’ve been drawn to media representations of people with touch phobia for some time now, from Ciel Phantomhive in Kuroshitsuji (Black Butler), to little Cindy in the two-part Press Gang episode written by the wonderful Steven Moffat.

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Ciel from Kuroshitsuji

Ciel from Kuroshitsuji

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Of course, it’s not a coincidence that I was also drawn to both of these characters; they have experienced childhood sexual abuse. That said, not everyone with a touch phobia has been sexually abused. But a lot of us have.

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Cindy from Press Gang

Cindy from Press Gang

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I’d list a lot more media examples, but we’re not really well-represented in the media. Which is a shame, because there’s not one way to have a touch phobia, and it manifests so differently that it would be you know – nice for me as someone who studies mass media – to see more representations of touch phobia out there.

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Some people are specifically scared of being touched by the opposite sex, some people are specifically scared of being touched by people, but not animals. Some people are specifically scared of sexual touch, but not any other kind of touch. Some people are specifically scared of intimate touch, but other forms of touch are fine. It affects people of all genders and sexes and walks of life. But not many people have heard of it, or know that such a thing exists. A lot of people don’t talk about it, even if they have it.

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There’s no guaranteed way to recover from a touch phobia. And everyone responds differently to different methods. Some people have a natural remission over time. Others need to put in a ridiculous amount of effort for a tiny amount of progress. Others find that they don’t want to recover from their touch phobia, because they don’t miss intimate touch of any kind, and don’t find they need it. There’s no one psychological technique that will work for everyone, and it’s important not to let other people try and convince you this is true. Because if you do, and then the technique fails you, you’ll end up blaming yourself, instead of the circumstances, environment, technique, or just ‘it not being the right time yet.’

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I’m writing about this again because it is actually the most common search topic on my WordPress journal. And I’m writing about this again, because I still have it. It’s still there. It’s still a son of a bitch. And because I’m not alone in trying to figure it out; but I feel that way, because not many people write about it. And because if you’re one of those people who feels alone in trying to figure it out, I want you to know you’re not. There are a lot of us out there, trying to wrap our heads around it, some of us wondering and hoping it could be different one day. And most of us are putting phenomenal amounts of energy into stopping it from getting worse, and even trying to heal from it.

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We’re out there. Cringing away from people who walk too close to us. Swallowing down nausea when a family member kisses us in neutral greeting on the cheek. Loving our partners endlessly and then struggling to understand why we can’t lie in the same bed with them, or cuddle. Letting the buses pass until there’s one empty enough for us to enter. Shopping online to avoid the crowds, and trying to count to 10 so we can survive waiting in a line at the bank. In whatever ways it manifests, we’re out there. And there’s probably more of us than we think.

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That very first story…

Did you know I used to draw a webcomic? And it was mostly awful. But the concept remains and is actually the new novel that I’m plotting out now. Anyway, you can see one of my really different long ago frankly crap illustrations of the main character.

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(Disclaimer, I drew this on the 887 bus route on the way to ECU one day, which, as anyone knows, does not lend itself to smooth lines).

Jess by Ravenari

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Well, anyway, it’s come up because the webcomic originally started as my ‘first ever novel’ when I was 12 years old. Then about 150 pages was irrevocably lost during a move to Alexander Heights and I only had the first three chapters left in hard copy. Gutted, I left it alone and moved onto other things (namely: highschool). One day though, I looked back and realised I still liked the basics of the story. And, shockingly, I looked back only to realise I’d been writing a main character who had PTSD and alexithymia before I knew I had PTSD or alexithymia. It was – and still is – like my 12 year old self had a snapshot of the kind of person I’d be at the age of 18, and wrote a character about that in a science fiction world on another planet.

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That was…incredibly disturbing, and it still is. Reading back on it now, I find myself thinking; ‘how did I know?’ Of course, some things aren’t the same. I’m not, for example, a gun-toting mercenary strategist who inherits a major spy syndicate.

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Anyway, then I wrote it out as a NaNoWriMo novel. And then I drew it as a 24 page webcomic. And then I shelved it again, and finally I’ve come back to it and I think this time I’m ready to write it ‘for real.’ It might only ever be ‘for myself,’ but I’m certainly ready to write it for real.

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In the meantime, I made a salmon macaroni pasta salad (with wholegrain mustard and celery and other things) this weekend, which was a hit (i.e. there’s none left). Tomorrow night I’m making a spaghetti with roasted garlic, onions, tomatoes, mushrooms and cabanossi. I was going to make that the other night but changed my mind. This paragraph is in tribute to Putu, who probably doesn’t have much access to cabanossi pasta right now (but I could go some umeboshi onigiri if you want to swap!)

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Tomorrow is Valentine’s Day, but I don’t actually celebrate it. Is that bad? I prefer spontaneous romance over ‘scheduled commercial romance.’ And while I know I could still turn it into a lovely, sweet day… I’d just prefer not to do so on that day. Do you celebrate Valentine’s Day? Do you do anything special for yourself when you’re single?

So I have this thing called a ‘touch phobia.’

Imagine your favourite food in the whole entire world was chocolate. It wasn’t just your favourite food, it made you feel better to eat it, it improved your mood, and nothing else really compared to it. It’s more than just a food. It’s something that you’re dependent on. You love having it, sharing it with others, experiencing it. It’s great.

Then – one day, for reasons that aren’t entirely clear – it makes you throw up, and feel itchy and scared and aggravated all at once. It’s horrible. For a year – because you love chocolate so much – you make yourself eat it sometimes thinking ‘maybe it’s the type of chocolate, maybe it’s the brand, maybe it’s the ingredients, maybe I just need to stand upside down while eating it,’ every crazy thing you are thinking of. You are that desperate to get back the ‘feeing better’ and improvements of eating it. You try other foods. You try lateral thinking. You try crazy stuff that makes you feel more sick while eating it, and you try scientifically prescribed stuff that doesn’t make a difference.

Nothing else makes you feel as good, nothing compares to it; one day you remember that humans are biologically designed to need chocolate. Tests show that without nourishing, healing chocolate, human babies are more prone to die, to get sickness, to wither, to be emotionally stunted later in life. Damn, you think, I need this stuff. Not because of science, or my biology, but it just made me feel good. I was more human with it. It was part of my shared collective experience of what it was to be a human.

Then, one day, after thousands of dollars and years of painful therapy and problems with your friends and family members who don’t really understand it, you are considered ‘recovered.’ But your recovery is that simply – you can eat chocolate without throwing up or feeling itchy, most of the time – but you’ll probably never be able to taste it again. It will never make you feel better again. Or improve your mood. And people tell you that this is reasonable and okay and even think that this is a Good Thing (TM). You can functionally eat chocolate without being sick, so…goal achieved?

They are wrong.

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Now, substitute ‘chocolate’ for ‘touch’, and you have haphephobia (aphephobia, or touch phobia). This is what I have. And this is what I’ve had for almost five years now (along with PTSD).

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Man it would be horrible to be that dependent on chocolate! But the analogy stands, human animals are dependent on postive experiences of touch. We are social animals. Without the ability to enjoy touch, I will always be a broken human animal. I will be biologically and physiologically incorrect. But even more than that – I will suffer for it every day that this is the case, as I have suffered for it every day that I’ve had it. Not a day goes by that I am not heartbroken at my own condition. Don’t get me wrong, I think I am an extremely fortunate person in many respects. I enjoy many parts of my life. But not as much, and not in the same way. I have learnt to find the joy where I can find it; who wouldn’t? That’s what you do when you want to make the most out of life, but I’m not going to ignore the impact this condition has on me; even though I frequently try.

PTSD without a touch phobia – even when my symptoms were phenomenally worse – was ‘easier’ to deal with (I say that with a considerable amount of wryness, I mean it’s still PTSD), it was easier to cope with my life, it was easier to be resilient to all of life’s problems. I was a nicer person. I was less grumpy. I found it easier to forgive. It is amazing how the ability to touch someone’s shoulder, or embrace them, or kiss them on the forehead in a crisis makes you a nicer human being overall. Or at least, it certainly made me a nicer human being.

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After five years of concerted, applied, fatigue-inducing, dedicated therapy with different therapists and even one specialist, and self-work, I can confidently say I have improved. And by improved I mean I can sometimes hug some of my friends and not feel awful or gross or like I need to run from the room about it. Sometimes I can hug my closest friend and not shudder with disgust or feel nauseous or sick. About four times a year I can do that.

Sometimes however, the touch phobia is so severe that even putting on my own moisturiser in the morning, can trigger a strong, phobic fear reaction. A couple of years ago a GP prescribed eight sessions of massage for a muscular condition; I went to one session and the massage therapist flatly told me they couldn’t help me. The muscular condition never healed as a result. I just don’t relax unless I’m unconscious! That’s a shame, I used to love massage too. And I get a lot of muscular conditions as I work as an artist, but also have crippling nightmares four or five times a night that leave me tense and sore every morning.

Touch often feels like ‘sandpaper rubbing vigorously beneath my skin.’ It’s worse the better I know someone which makes me a delightful dating partner, close friend, family member and on and on. And yes, it’s probably tied into my experiences of childhood sexual assault; though exactly how, none of us are sure. Not even after years of meditation, thought, self-reflection, therapy, dreamwork, clinical detached examination and etcetera. It’s additionally confusing because I haven’t always had a touch phobia, and I haven’t always been repulsed by touch. As per the above analogy, I used to have a very positive relationship to chocolate touch. I craved it. I felt positive touch to be a joyous thing at times, soothing at others, a way of forging connections, showing compassion, and so on.

But no longer.

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I am sure there are people out there who have recovered faster than me, because I will frankly admit that I like to take things slow in self-work and self-improvement, even if I devote time to it every single day. And I’m sure there are people out there who haven’t. It’s hard to know, because it’s a less common phobia, and it tends to affect those of us who have already been silenced by abuse of some kind.

It seems we’re the ones least likely to write about it publically, like I’m doing right now.

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Most phobias are of things we’re not physiologically designed, behaviourally programmed to need and crave. I mean, humans aren’t really meant to experience positive growth upon encountering venomous spiders, needles, the number thirteen, germs and so forth. It’s just, on the flipside, not meant to create super dysfunction when one encounters them.

Touch is one of the exceptions to the rule. We are physiologically designed and behaviourally programmed to need it, to thrive upon it, to grow with it. It improves our immune systems, it makes us happier people, it reminds us we are part of a community, it’s a way of showing love amongst friends and lovers, and a way of forging a connection between business colleagues, and a way of being human.

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All I can do is keep working on it. Sometimes consciously, sometimes laterally by approaching other issues in therapy, sometimes by standing on my head and focusing on the basics like eating well, keeping fit and making sure I get enough rest. Sometimes I’m in a better place about it than other times. December is always a tough time because my friends like to hug, and because once upon a time so did I.

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I’m putting my own personal account of aphephobia/haphephobia out into the ether. I’m Ravenari, and I have a touch phobia. I’m working on it, I will always be working on it while I have the strength and the fortitude to keep doing so.

I can’t tell you exactly why I’m writing about this so candidly, except that I am very frustrated that there’s very few public personal accounts of aphephobia/haphephobia out there. There’s some clinical descriptions, there’s a few shorter personal accounts (boy I bet you were wishing this was shorter!), and that’s about it. So here’s some of my story. Do with it what you will.

PS: Please don’t hold my terrible chocolate analogy against me! Lol.