I have been thinking a bit about how to non poorly people (or non spoonies as we say in the chronic illness world!) that life with chronic illness/M.E might appear to be not as bad as it actually is.  For example, people sometimes suggest that because we are stuck in the house a lot & often unable to work it must be really good.  How it must be brilliant to not have to get up for work with the alarm at silly o'clock.  I possibly would even have thought the same pre illness but the truth is it is far from good.

The reality of living with chronic illness is so different to how people may imagine it. Seeing these programmes on tv where it shows people living off benefits, who have no intention of working, really doesn't help. Who in their right mind would choose to live, or not live if we are being literal, this life?

Who would want to wake up after not sleeping properly & not feeling refreshed (ever) & have to get through the day full of unpleasant symptoms?  Would anyone really?

I would do anything to be able to be "normal" (or just not poorly!) & go out to work.  To be able to spend time socially without it wiping me out for days.

Another misconception is that when we are in wheelchairs due to our bodies not being very good to us, it appears a miracle when we stand up or actually heaven forbid walk! George Takei posted a picture yesterday which went crazy on social media & alot of people were really disappointed in him. This is the picture...

It is wrong to assume because someone is in a wheelchair or using a walking aid that they cannot walk at all.  Or to look at them disapprovingly when you see them stand up to reach something!  We use wheelchairs because our legs or our bodies have basically let us down.  We are sometimes still mobile.  It's not for the fun of it trust me!  (Although my daughter thinks so, she loves getting rides on it even now age 5!)

I had a pretty distressing experience on the way home from holiday when my daughter was a baby.  I had been really poorly anyway during the week, it was the start of a massive relapse. We were at the airport in Ibiza & the special assistance lady was pushing me through security in the wheelchair, seperately to the rest of the family.  I suddenly realised that I had everyone's passports so I stood up to call them & out of nowhere all these Spanish armed police appeared & took my (own) wheelchair away, shouting at me & bascially accusing me of faking needing the wheelchair.  I got really upset & the lady who was helping me had to pretty much convince them that I did in fact need it.  It really shook me up.  Talk about ignorant.

When people are using mobilty scooters, it is almost more acceptable to onlookers when they get out of it as people expect them to be able to walk a bit etc.  It shouldn't be any different for wheelchairs though.  I would actually love a scooter as it gives me much more independence but I wouldn't be able to lift it into the car & I can't drive far anyway so not sure how often I would use it. If anyone wants to throw one my way though I won't say no ;-)

There are some extremely ignorant people out there which I have touched on previously in another post here but for every rude one there are lots of nice ones! Not all illness/disabilty is visible but it is very real & every single person living with it, for whatever reason, is amazing.  I have met some fabulous people recently which I should hopefully be able to talk more about soon as there are exciting things in the pipeline. But for now please just remember not to assume it's easy for anyone living with (chronic) illness as it most definitely is not xx


  1. I totally agree with this post, I'm mid-way through writing one similar at the moment about how some people see staying at home or not sleeping as a cool-glamorous thing. I think once it is your reality you start to see the whole world a little differently and start to appreciate even the small things a lot more.
    And that what happened to you at the airport sounds truly horrible! It is disgusting that people especially the police, people with such authority and influence over others, can be so ignorant and oblivious!

    1. Thanks Katie, so true what you say about when it becomes reality. No fun at all is it. I know still makes me judder when I think about it, thought they might shoot me!!

  2. I can so relate to this. It drives me nuts when my friends complain about how boring work is or how someone is irritating them. I know they are completely entitled to moan and rant every now and then, but it's hard not to point out that I would give almost anything to be able to work.

    As for getting up out of wheelchairs/scooters, I have been lucky in so far as not having any negative experiences. However, thanks to pics like the 'miracle' one you posted, every single time I have to get up to reach something (what do people expect when I struggle to reach while standing, as when I'm in a wheelchair I can't even see half the stuff on the shelves) I am very self-conscious and paranoid that everyone is judging me. I'm sure it's not the case, but due to the constant jokes made at the expense of disabled people (especially those with invisible illnesses) it is impossible not to worry about it.

    1. Thanks for your comments Tamara. Yes if only people realised how doing something so normal as going work is something we would give anything to do!

      People's reactions are pretty funny really when we reach/stand up to get something whilst in chair. I know it's easy saying don't worry what other people think but it's hard not to :/


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