The language of a bad day.

The other day a twitter user asked what phrases or descriptions people use to describe the patches where they are more symptomatic - Flare up? Exacerbation? Aggravation?

It got me thinking about what I do and why, so I thought I'd blog my answer.

(Please note that this is personal to me, my situation, my conditions, etc. Everyone will have their own approach that works for them - which will probably change over time - mine certainly has)

'Flare up' is a pretty common term in the hypermobile community. Symptoms flare up - leaving the individual incapacitated, or at least less able than usual.

When my symptoms worsen, there's almost always an identifiable cause (even if it takes me a while to work out what). To me, 'Flare up' as a term feels like it doesn't fit this 'cause and effect' thing so I don’t tend to use it.

Usually my way of describing times when I am more symptomatic is one of the following three:

Symptom descriptions (literal or metaphorical):

  • “My pelvis is particularly shouty”
  • “Can’t think or walk straight, but within my normal”
  • "There's a horse sat on my chest"

A comment to give context to an otherwise vague statement:

  • As expected, given how much I’ve been doing this week
  • Pretty rough, but not bad given *whatever factor has caused predictable symptom worsening*

Description of the coping mechanisms I need to activate:

  • It’s a recharging day (when recovering from overdoing stuff)
  • It’s a sofa day (when things beyond my control are messing with symptoms in a predictable way – e.g. hormones, weather, insomnia, illness)
  • 'No talking today' 
  • 'seriously no standing today' or 
  • 'I'll have to take it slow for the next week at least'

In answering this, I realised that my favourite approach is using a description of what I need to do to manage symptoms. 

I think this might be because:

  • By using phrases which focus on what I’m doing to help myself, I feel more in control (my symptoms are not dictating my life, I am taking steps to manage my symptoms).
  • I am less likely to have to navigate an 'extreme pity' response.
  • By using practical illustrations, I let people know the effect of the aggravated symptoms. This helps the listener to understand what might or might not be helpful, and reduces the frequency of unhelpful suggestions.
  • I don’t like focusing on symptoms. They are present, and shape my life, but it’s nice not to have to talk about them in detail with everyone.

Whatever terms you find work for you, I hope your today is OK - all things considered, and that you have some strategies to help you through any rough patches.