Saturday, 27 May 2017

Disability: Appropriate offers of help

Friends and family often struggle to know when to offer help. Especially when it comes to variable and hidden aspects of disability - such as fatigue, pain, brain fog, or depression.

To me, as a person living with some of these symptoms, it feels obvious.

If I'm doing okay and managing a task (even if I'm doing it differently) then it's pretty obvious I don't need help. Being repeatedly offered help (or worse, given help without being asked) when I'm so clearly okay is SO frustrating! It takes away my enjoyment in being able to do it, it takes away my independence, and it makes me feel worthless. Plus I waste precious energy fighting off the offers of help instead of using it to do what I'm actually trying to do!

If I'm struggling, trying to push through nearly unbearable pain, unable to think straight, close to tears - then quite clearly an offer of help would be appropriate. And when people don't offer, it is like the seriously don't care that I'm struggling. Totally selfish. Like my needs are just not important at all.

But here's the thing I forget:

They are 'hidden' symptoms.

The foggly eyes and lightening strikes of pain so obvious in stickman are not visible in human. They are obvious to me. They might be so obvious it's hard to see anything else. But they are hidden from someone looking at me.

So if we translated those two scenarios into what it looks like to others instead of what it feels like for me, we get 2 scenarios that look nearly identical - a person preparing food. But in one the other person gets their head bitten off for offering help, and in the other they get their head bitten off for NOT offering help! This can result in the other person feeling like they always get it wrong, that their help isn't wanted, that they are worthless, that nothing they do is good enough - etc.  Is it any wonder that they can get frustrated and demoralized and stop offering help?

Realising this has helped me a lot. 

You see, remembering that it's not automatically visible makes me realise I need to communicate how I'm doing in order to get offers of help that are more appropriate - and acceptable.

Communication involves both people being on the same page - so having a conversation about the symptoms (and need for help) being variable and not obvious might be a good start. Or writing a 'dear loved one' letter or similar (see my earlier blog on types of communication)

And then find ways of communicating 'in the moment' where help is needed (or not) that work for both of you. Codewords can be very useful ("out of spoons" "Level 9 zombie" etc.). 

Personally I like things that 'Make the invisible, visible' - like flashcards or wristbands.



The important thing is that together you come up with a way for the 'foggly eyes' of stickmen to be accurately conveyed in Human - working together towards a future where offers of help are appropriate and constructive instead of a cause of friction and distress.

1 comment:

  1. You have just explained and helped me with the reason why I used to have so ,any rows with my bloke. He would often just pull the thing out of my hand and just take over what I was doing leaving utterly gob smacked. But from his point of view he might have seen me struggle with that exact thing several times before on bad days. Now he only helps if I ask or if he can see an accident waiting to happen. I have to remind myself that he can't see all of the tiny ways I struggle so it easy for him to even forget I struggle with certain things, which seem totally obvious to me. It really is all about communication isn't it!

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