Non-verbal communication

So this is a new topic for me but I think it’s probably going to help a lot of people.

Communication is something we all do, usually without much thought but there are some times when communication can be a bit harder. The most obvious types of communication are talking and listening but actually, a lot of communications is non-verbal. Non-verbals like body language, facial expressions and physical contact with others often give us a lot of information about how people are feeling or the tone of the conversation. A smile, a wave, a hug or a pat on the shoulder all convey positive feelings. A frown, a fist, stamping your feet or pushing people away indicate negative emotions.

For me, when my autonomic system goes a little wonky and my heart rate gets too fast I sometimes lose the ability to communicate verbally… Words that usually come to me easily seem to slip away like water through a sieve. If you imagine someone who’s drunk but also has heat stroke and a mouth full of marshmallows you’d probably have a rough picture of me when my PoTS flares up.

fatigue can also massively impact communication. Ever been so tired you simply cannot speak or even think? Well I have and it makes asking for help very difficult.

Unfortunately for many people the times when you need most help are also the times when you cannot ask for it!

So how can we communicate when words aren’t an option? Here are a few suggestions for non-verbal communication.

Communication cards – These are usually short pre-prepared cards with frequently used messages on. My favourites are by Hannah Ensor of Stickman Communications. Hannah has a wide range of cards, some condition specific ones for HMS/EDS, CFS/ME, Autistic Spectrum disorders, Diabetes, Dyspraxia and Postural Tachycardia etc. Other cards are generic and cover simple things like needing to lay down or not being able to speak at the moment.  I have a stack of these on a lanyard that go everywhere with me, they communicate the nature of my condition and what I need from others, they also usually generate a few laughs and help to educate people even when I can’t explain things.

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Stickman Communications Keyring Cards

I do know lots of people who have made their own cards, some thick craft card and a little creativity should be a good start.

Smart Phones – these days most of us have a smart phone, when you’re not up to speaking it can sometimes be easier to text or even just add a memo.  Fancy phone apps these days can even read out what you’ve typed. You can also use phone reminders to prompt things like medication and appointments. Sometimes I wonder how I remembered anything at all before getting a smart phone!

For emergencies I do have my phone pre-loaded with my emergency information. There are lots of first aid / ICE / emergency apps available and many of them are free. My current app is ‘ICE: In case of emergency’ and it contains all my contact info, my medications, a brief medical history, allergies, instructions for how to move me safely and two emergency contact numbers. On my medic-alert bracelet, the last line says ‘Details on phone ICE app’ so people know to look.

BSL / Makiton – I recently spoke to a friend who uses sign language to communicate with her mum, brilliant right?! but this might not be the easiest method if you don’t already know how to sign! Makiton is a similar principle but a little easier to learn, a lot of it looks a bit like the thing it’s supposed to be.

On a more simple note, with people you know well it is often possible to get the message across with arm waving, mime and interpretive dance. Don’t be afraid to do this, it can feel a little silly to start with but in all honesty it’s become part of my normal communication and I don’t even think twice about acting out things I need help with. We (humans) often use our hands when we speak anyway, a lot of extreme sports rely partly on hand signals too. Next time someone asks if you’re ok just give a thumbs up as supposed to wasting energy speaking.

Picture books / charts – These are often used for people with learning disabilities or speech problems but there’s no reason why other people can’t use them too. They work on a similar principle to communication cards, they have a variety of pictures or words on velcro so you can velcro them to the front page in any order to create sentences.

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Communication books

Along similar lines, picture charts can be used to plan your week. This can be especially useful if you have a number of different people helping out at different times. Having a picture chart means you all know where to look for the plan and you don’t need to explain things every time someone new pops up.


When trying to communicate it is often wise to combine communication methods. You could mime writing to ask for a pen, then write down what you need. You can combine miming writing with a panicked facial expression and a thumbs down in order to give across a little urgency.  A communication card to ask for medical assistance and a phone memo with your medical needs.

When trying to communicate it’s important to remember that it’s a two-way process, the other person(s) need to be able to understand you and vice versa so please bear in mind you might not be the ony one struggling. It can be incredibly frustrating trying to communicate, especially if you’re in pain or feeling anxious. If things aren’t going as planned then take a deep breath and try another method.

I do hope this is useful to some of you. Please feel free to suggest alternative methods, I’d love to hear from.

Take care all, JBOT

9 thoughts on “Non-verbal communication

  1. Great ideas! I do sign, and my spouse, who doesn’t, much, has learned the signs for ‘pain’, ‘tired’, ‘meds’, drink’, etc – stuff I may need & can’t find the words for! I wanted to address a flip side of non-verbal communication, one we started to notice and then my doc really put into perspective. As someone who isn’t capable of keeping my body all on straight all (most) of the time, I sit/stand/walk funny, but it’s NOT an emotional comment, it’s me holding it, literally, together.
    I sit with my arms wrapped in various ways to support ribs or shoulder or hips. I hold my hands over my face to mitigate the info coming in, lean oddly to support or ease something that’s subluxed, rock in a whole lot of different directions to provide soothing motion to my spine, to get the right temp against my back from my hot pad, etc.
    All of this is totally spontaneous – it’s what i need when I need it. And a lot (who knew?) can send the wrong message. I’m not folding my arms because I’m mad or not listening – it’s to support that one joint. I’m not turned away because I’m not paying attention, it feels better that way – until I need to turn the opposite way. And I fidget like crazy – because I’m constantly trying not to put too much pressure on any one body part or in any one direction. All of it is only communication that I’m kinda stretchy & displaced, not anything to do with our relationship.
    I need to tell this to people who get close to me, so that they know that my body-language dialect is EDs!

    1. All very good points! You’re totally right about others perceptions of EDS mannerisms. I have a tendency to look blank but actually it’s because I’m concentrating on not falling over!

      1. Wonder what people would think you meant if you were very expressive – from a vantage of sideways on the floor?

  2. These are all fab communication ideas. I’ve actually been looking on Stickman Communications today, having seen the red, orange & green wristbands on the HMSA YouTube channel. I really want to make communication easy for when we have a child. It’s hard enough for a child having to learn & understand language, without having one parent ill. I think the bands would be really helpful both me & our child to show when I’m having a difficult day. Looking through the website I’ve been really impressed & plan to pick up the ‘reasons to need a wheelchair’ card, to have visible when I have my chair so that people don’t freak out or accuse me of ‘faking’ if I stand up. There are so many others that I think would be really helpful for a child to be able to use to tell people what’s happening if I become unwell. Xx

    Tania |

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