Misconceptions

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