I have been thinking about how difficult it is having an invisible illness.  For a lot of people, unless they can see something obviously & physically wrong with someone, then they don't understand how you can be ill or disabled.

For example, I have had many a dirty look from people when I park in a disabled parking space without having my wheelchair (but with my disabled badge!) & get out the car.  I can walk a tiny bit.. so I must be a fraud!!! It winds me up & I have been known to lose my temper when I've experienced tutting or eyes rolling from ignorant people.  I have also been known to say sarcastic comments too!  Interestingly, the majority of people I have seen this sort of this behaviour from have been elderly.

The problem with invisible illness is that you may look "well" yet you feel far from well.  Everything hurts.  It is an effort doing the smallest of things.  I am good at disguising my pasty white face & dark eyes. Make up is my friend!

We went out for a meal a few nights ago with some friends & I put my face on!  I tried my  best to cover my dark circles but I could still see them.

We had a really nice night but I knew I'd suffer for it.  Payback is wonderful!  Not long after getting home I started aching. Palpitations kicked in.  I took hours to get to sleep.  I woke up the next day feeling like that double decker bus had got me again.  I took a picture while I was in bed, where I spent the majority of in day.  This is my M.E face!  The 'day after the night before' face!

However, it was worth going out & actually feeling normal. We have to try living a bit rather than just existing.  I hide away in the days after when I look like a junkie!  And then I reappear when it isn't quite so bad.

So please do not judge or assume people are OK when you don't know how they are suffering.  Someone may look fine but it's what's going on on the inside that you can't see xx


  1. Great post - shows what we go through to do what most people do without thinking.

  2. Apologies for people having trouble leaving comments I am trying to fix the problem!


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