Monday, 24 March 2014

DESCRIBING AN INVISBLE ILLNESS



When deciding what to write about in this blog, I've tried to think about what would've helped me when I first fell ill. Although there were plenty of practical things that I would've liked advice about, one of my biggest (and perhaps most irrational) concerns was how to respond when anyone asked what was wrong.


A harmless, well-intentioned enquiry about what exactly my illness is would send me into a state of panic. I had no idea how to quickly summarise the extensive list of symptoms, all of which were 'invisible' to the person asking. I was so conscious that I didn't appear sick or in pain that I was convinced they'd think I was making a fuss over nothing. In my panic, I would rarely manage much more than "I'm just so exhausted" in response. This would leave me feeling extremely unsatisfied and embarrassed. It barely scratched the surface and in no way reflected how difficult it had become to function on a day-to-day basis.


As time has gone on and I've got to know my illness better I've slowly built up a sort of script for answering the 'What is ME like?' question in a way that I am comfortable with and leaves me feeling satisfied. Having just a few sentences in the back of my mind that I can roll off has done wonders for my confidence when talking about ME and saves that horrible panicky feeling.


I always start by being honest and saying:

'It's quite difficult to sum up because there are so many different symptoms but a lot of the time it feels like I have the flu and a horrendous hangover combined'

This means that however far I get with my explanation, I cannot come away feeling that I have done myself the disservice of dismissing it as 'just being tired'.


I may then add:

'I have very limited physical and mental energy supplies which makes it very difficult to do a lot of normal everyday things like having a bath or reading a book.'

Stating 'physical and mental', helps me to feel that I have covered the breadth of symptoms and reinforces that it is a physical illness.


And then, if the person is still with me and appearing interested I might add:

'If I do too much, I often pay for it later and will have to spend lots of time in bed until I recover'

Post-exertional malaise, or payback, is such a significant part of ME that it only feels right to mention it.


I know most people are after just a very quick description and so I am always conscious to not go on for too long. How much or how little detail I go into varies from person to person but these few sentences have provided me with a nice framework to start me off and cover what is important to me. I now find it much easier to talk about my condition and am far less often struck dumb when asked to describe it. These are sentences that work for me as they cover the aspects of my illness which I would like to get across. I'm sure other people with the same diagnosis have other go-to phrases which work for them.


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4 comments

  1. I've been in that panic moment too many times, like you I now have a sort of script which covers everything but even still after so long I can easily forget things. I'm sure this post will be so helpful for anyone still unsure on how to explain things :) x Hayley-Eszti

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    1. Sorry to hear you've been in that panic moment too... It really is a horrid feeling! I forget bits all the time too. Sometimes I think it would be much easier if it were socially acceptable to just hand over a little information leaflet! Fingers crossed this might help somebody new to the illness before that day comes :)

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