The trouble with 'hidden' or 'invisible' disabilities and symptoms is that they can't be seen.
But this also applies to 'visible' disabilities where there are symptoms that aren't visible. Effects that are hidden to the casual observer.
Like pain or fatigue.
They can't be seen.
"Ah," my thoughts say "but it is visible on my face - you can see from my expression that I'm in pain."
Really? How does an observer know whether it's physical pain, mental distress, stress, feeling down, angry or even just concentrating?
These things can be so obvious to the person experiencing them that it's hard to remember that they aren't so obvious to others.
But there's something that makes it even worse.
And that is 'Actions speak louder than words' - trite but true.
Who else has done this:
You are asked/invited to do something. You say no. They pressure you. You cave in and do it. Then once you are alone in the safety of your own home you crumple - the symptoms you've been struggling to hide and ignore all day overwhelm you as your defences come down and the energy required to 'pretend' runs out. It then takes days to get back to your normal level of symptoms.
When this happens to me, not only am I left struggling to recover and unable to go about my daily life because I pushed too far, but the other person then seems to get even more pushy, ignores my symptoms, insists I can do more if I push myself, and even hints that if I changed my attitude I wouldn't be disabled.
The trouble is that actions speak louder than words. The 'foggly eyes' of a stickman aren't visible in humans. What I communicated was that I could do what I said I couldn't. They didn't get to see the effects. They saw me coping when I said I couldn't. They didn't see me crumple - they saw me upright and functioning. I might have tried to explain my symptoms - but I also hid them. So because actions speak louder than words, without meaning to, I 'told' them I had done it, and was OK.
I can't expect people to understand my normal if I don't let them see them my normal.
I don't mean I think I should go round trying to make every symptom constantly visible - that would just be weird and kinda depressing.
But I do mean I pace and take breaks when I'm with friends - go and sit in a quiet corner, I lie down randomly. I tell visitors it's time to leave when my symptoms are escalating. And it's very rare that I say 'I'm fine' to someone if I want them to understand my normal. I can't blame them for not understanding things that I've hidden from them.
Yes, this can be tough to start with - as the people around us have to go through a learning process. There might be awkward questions. There will be 'being different in public'. But my experience is that this 'allowing people to see my normal' has over time enabled me to do SO much more with fewer symptoms - because the people around me make allowances for my normal and don't pressure me into doing things that won't help me.
This is why I started to draw stickmen.
To show my normal in a way that wasn't negative or complaining, so that others could learn my normal, and my quirks that help me to live well with my conditions.
And now it's why I run Stickman Communications.
Because stickmen can make the invisible symptoms visible. They help me explain my normal in ways that are understood and are not seen as being 'negative'- and as a result also help me to stand my ground when something will be too much, and when I choose to do something that I know will push my limits, I'm not afraid to let people see bits of exhaustion, or pain coping techniques.
True, they don't magically solve all issues, but for me they've been a great help.
But this also applies to 'visible' disabilities where there are symptoms that aren't visible. Effects that are hidden to the casual observer.
Like pain or fatigue.
They can't be seen.
"Ah," my thoughts say "but it is visible on my face - you can see from my expression that I'm in pain."
Really? How does an observer know whether it's physical pain, mental distress, stress, feeling down, angry or even just concentrating?
These things can be so obvious to the person experiencing them that it's hard to remember that they aren't so obvious to others.
But there's something that makes it even worse.
And that is 'Actions speak louder than words' - trite but true.
Who else has done this:
You are asked/invited to do something. You say no. They pressure you. You cave in and do it. Then once you are alone in the safety of your own home you crumple - the symptoms you've been struggling to hide and ignore all day overwhelm you as your defences come down and the energy required to 'pretend' runs out. It then takes days to get back to your normal level of symptoms.
When this happens to me, not only am I left struggling to recover and unable to go about my daily life because I pushed too far, but the other person then seems to get even more pushy, ignores my symptoms, insists I can do more if I push myself, and even hints that if I changed my attitude I wouldn't be disabled.
The trouble is that actions speak louder than words. The 'foggly eyes' of a stickman aren't visible in humans. What I communicated was that I could do what I said I couldn't. They didn't get to see the effects. They saw me coping when I said I couldn't. They didn't see me crumple - they saw me upright and functioning. I might have tried to explain my symptoms - but I also hid them. So because actions speak louder than words, without meaning to, I 'told' them I had done it, and was OK.
I can't expect people to understand my normal if I don't let them see them my normal.
I don't mean I think I should go round trying to make every symptom constantly visible - that would just be weird and kinda depressing.
But I do mean I pace and take breaks when I'm with friends - go and sit in a quiet corner, I lie down randomly. I tell visitors it's time to leave when my symptoms are escalating. And it's very rare that I say 'I'm fine' to someone if I want them to understand my normal. I can't blame them for not understanding things that I've hidden from them.
Yes, this can be tough to start with - as the people around us have to go through a learning process. There might be awkward questions. There will be 'being different in public'. But my experience is that this 'allowing people to see my normal' has over time enabled me to do SO much more with fewer symptoms - because the people around me make allowances for my normal and don't pressure me into doing things that won't help me.
This is why I started to draw stickmen.
To show my normal in a way that wasn't negative or complaining, so that others could learn my normal, and my quirks that help me to live well with my conditions.
And now it's why I run Stickman Communications.
Because stickmen can make the invisible symptoms visible. They help me explain my normal in ways that are understood and are not seen as being 'negative'- and as a result also help me to stand my ground when something will be too much, and when I choose to do something that I know will push my limits, I'm not afraid to let people see bits of exhaustion, or pain coping techniques.
True, they don't magically solve all issues, but for me they've been a great help.
my son has noonan syndrome and struggles daily with chronic pain and fatigue his school would push him to do more then complain when he falls asleep in class these are great and informative to show the school i ordered the pacing pack for David and will order some of these cards , thank you these explain everything without going into too much detail .
ReplyDeleteThank you! This is such an important thing but it can be easy to forget.
ReplyDeleteThis post, and the one where you said along the lines of 'If I can't do it without unacceptable consequences, then I shouldn't be doung it' helped me to recognise and address a situation that had gradually - and completely unintentionally - developed at work. And thanks to these two posts, I understand why it developed, so I can be on guard against anything similar arising in future. So, thank you for writing such useful and important posts!
""Ah," my thoughts say "but it is visible on my face - you can see from my expression that I'm in pain."
ReplyDeleteReally? How does an observer know whether it's physical pain, mental distress, stress, feeling down, angry or even just concentrating?"
Ha! A recent interchange with a colleague illustrated the truth of this: she asked if someone had done something it upset me. I stood bemused for a moment because I was perfectly happy, then realised my brows were furrowed because I was exhausted and feeling pretty horrible (but nevertheless perfectly happy to have got to work and still be upright). So I replied, "No, not at all, this is just my 'staying upright' face"
[Rereading some of your particularly helpful blog posts because I'm kind of struggling this week - they make me feel less alone and confident that I am indeed trying my best. Thanks!]