Human of Queen’s: Interview on Synaesthesia

This week I was approached by colleagues from Queen’s University Belfast to give an interview on my experience of living with the neurological condition, synaesthesia.

I’m really grateful to the Social Media Team at QUB for giving me the chance to share my story and raise awareness about this incredible condition. You can read the short form version on QUB social media accounts. I’ve included a longer version below. Hope you enjoy and feel free to get in touch if you have questions!

BIOGRAPHY: Dr Eilís Phillips is a musician, writer and researcher working in the Faculty of Arts, Humanities and Social Sciences at Queen’s University Belfast. She holds a PhD in Monster Theory & Nineteenth-Century History. In 2020, her 8 album musical catalogue was chosen for inclusion in the British Library Sound Archive. Her favourite part of working for Queen’s is helping students and local creatives connect with inspiring career mentors as part of the AHSS Student Alumni Mentoring Programme, and Future Screens NI.

What is synaesthesia?

Synaesthesia is a neurological condition that involves a connection between two or more of the senses, e.g. taste and sight.  It’s a spectrum of experience that can range from someone seeing words as colours when they think about them, or maybe experiencing a taste in their mouth when they hear certain words, to a more pronounced form of the condition where all the senses are connected and constantly overlapping, which is what I have.

Is everyone on the spectrum?

This seems to be one of the main areas of debate: is synaesthesia inherent in everyone to a small degree? How can synaesthesia be enhanced or acquired? Is synaesthesia the next step in human evolution? I’m not a neuroscientist, so I don’t know, but I’ve heard about some exciting research studies in the last couple of years. Still, the fact that we are asking these questions suggests there’s a lot we don’t understand about the condition. I’m sure there are so many people who have it but have no idea what it is.

People who don’t have synaesthesia (or maybe haven’t realised they do) often get it wrong. What do people assume synaesthesia is?

There are quite a few articles online about musicians and artists using their synaesthetic ability to ‘see sounds’ to enhance the art they create. That’s a wonderful facet of synaesthesia, but it only tells a tiny sliver of the story. Synaesthetes are often depicted in the press as whimsical oddities. That kind of rhetoric sets us apart and places a burden on us to be exceptional or performative without acknowledging how overwhelming it can be to have the condition.

What does your synaesthesia include?

I’ve sort of lost track of all the different types because for me, everything is linked, and multi-layered. All smells have colours, I feel every movement around me – such as someone scratching their arm – like a touch on my skin. Emotions surround me like clouds. I can ‘hear’ moving objects and sound flows around my body in coloured waves. Some words can be physically painful or disgusting to say, and some can have a really pleasant effect.

I talk about ‘seeing’ all my senses because everything gets translated as patterns to me, like a computer readout in my field of vision.  If I want to remember who sang a particular song, the smell of a perfume I used to wear, or the personality of someone I’ve met, I’ll look for the memory of the pattern. For me, synaesthesia is like a card library, with everything I experience translated into code and placed in a slot in my memory.

What was life like before you realised you have synaesthesia?

I don’t know, confusing I suppose. I’ve always had synaesthesia. I just thought everyone was like me. The older I got, the more I started to think ‘uh oh, I’m not normal’ but I didn’t know why and no one else did either.

What was it like when you were diagnosed and how has it helped you?

When I was a teenager I remember my mother listening to a radio show about synaesthesia. She came out of the kitchen and said ‘What colour is the word shop?’ I said ‘well it’s yellow’ she agreed and that was that, we realised we both had it.  After that I started to realise that I saw the world differently to other people.

I have spoken to doctors about my experience and I’ve given my DNA to researchers. I totally understand that people need our help to grasp the condition, but there are times when I think, I wish someone would actually do something for us. I wish there was practical help available given by people who have really studied the condition.

Recently I wanted to know if I would be considered safe to drive, or safe to go under general anaesthetic, things like that, but no one could tell me. There just doesn’t seem to be a legal or medical frame of reference for people like me who have an extreme form of synaesthesia, or the knowledge certainly isn’t widely available.

What is the best thing about having synaesthesia?

The colours! I hallucinate constantly, it’s totally normal for me. It’s like living inside a kaleidoscope, everything is so vibrant and alive. In my world, I guess you could say magic is real – because I can see things that are otherwise intangible. Hope is something I can put my hand on and touch. I can smell everything on the television. I can empathise with people quite deeply because if they cut their hand, or experience heartbreak I will ‘see’ and feel it physically on my body too, and all around me.

I’m so grateful to have this. I know that what I experience every second of every day – even when I’m asleep – is something most people may never experience, or only experience briefly through meditation or medication. For someone it might be the moment that changes the course of their life whereas for me it’s just, oh there’s another sunset in the key of C Major, it must be Tuesday.

What is the most difficult thing about having synaesthesia?

How overwhelming it is, and how lonely it can feel. It’s like seeing something incredibly beautiful, or experiencing something really poignant and having no one else you can turn to who will understand. Instead, people just laugh it off or think you’re talking nonsense. It can be heart-breaking. I wish more people knew how painful some types of synaesthesia are.

I worry that people think I’m too sensitive. I once worked in a place where they played loud music all day long and so often I just had to go into the toilets to cry. It was like being repeatedly punched in the face by geometric shapes. But how do you explain that to someone with no frame of reference for what synaesthesia is?

How has it helped you in your music career?

Having synaesthesia is brilliant for creativity, inspiration is all around you. I’ll be writing a song and think, ‘what this needs is the colour violet’, which could be a chord change, and suddenly the song sounds better. Synaesthesia can sometimes give you a way to describe what seems inexpressible.

It’s a shame that the condition is only usually referenced in relation to the Arts but not Technology. I’ve been thinking recently about how you might be able to teach AI [Artificial Intelligence] to be more genuinely creative, or to better recognise and replicate human emotions by modelling the system synaesthetes like me (if there are others like me) use for interpreting sensory data. It isn’t purely intuitive, everything is pattern recognition and replicable. My parents are computer programmers so I grew up surrounded by conversations about code and algorithms and I wonder if that shaped how my synaesthesia developed.

Image: Kris Telford @SilentCanvasMedia

Would you give up your synaesthesia if you could?

No. Absolutely not, it’s integral to who I am. I don’t know how to understand the world without it. I’m always amazed at how people ‘hear’ music without seeing it. That to me is the real magic.

As much as it can be unbearable at times it’s still the most precious thing I have.

My dream is that one day synaesthetes will be better recognised for the value we bring to society, not just as a kind of artistic gimmick. I would love synaesthesia awareness to reach the stage where someone could list synaesthesia skills on a CV and have an employer see that as a huge benefit, not as a red flag.

If someone is wondering if they have synaesthesia, what signs/symptoms should they look out for?

I’m not qualified to diagnose, and experiences of synaesthesia can vary wildly, but I think most online tests for synaesthesia revolve around the very basic questions of ‘Do words and numbers have colours when you think about them’ or ‘When you hear sound, what does it look like? Do words have flavours? Can you physically ‘feel’ sounds on your skin?’

People with more pronounced forms of synaesthesia are more likely to be sensitive to loud noises and lights. There are lots of support group on social media platforms; sometimes those are the best places to look if you want to read the actual lived experiences of synaesthetes as opposed to only seeing what is reported on in the press.

What would be your advice to someone who discovers they have synaesthesia?

I guess I would just say – you’re not alone, you’re not ‘weird’ and you shouldn’t need to hide or lie about your experiences to minimise them and appear ‘normal’. Take your time to understand the types of synaesthesia you have, and embrace them. People may struggle to understand what it is you’re experiencing, and all you can do is be patient, but you don’t owe your experiences to anyone. The people who really care about you will accept you exactly as you are.

Image: Kris Telford @SilentCanvasMedia