The trouble with being a spoonie

There is one persistent problem all spoonies have: people not believing the hardships on a daily basis that we go through. They think of it like a headache – it will go away with some Advil or Tylenol. No. Sorry buddy. Sorry our friendship was not worth enough for you to understand or even try to appreciate what I’m going through. Instead you constantly forget I’m in constant – sometimes unrelenting pain – yet you still go on with yourself telling me I can’t leave poker when I need to when my neck can’t stand up on it’s own anymore and I still have to drive home.

I dare you to walk 10 feet in my shoes. If you were able to do so you would feel like death incarnate. You are utter douchebags when it comes to how you treat others who don’t align with your every day feelings which also include a wife who is a spoonie but doesn’t identify as one merely because she’s never heard of the term or theory.

Obviously I’m using one ex friend as an example here. It got to the final straw with him and his friends where I had to wipe my hands of him and them due to their ignorance and constant berating claiming things like “oh it’s just a headache, stretch, walk it off or take some Advil”. Your ignorance adds to the stigma.

Ignorance adds to the stigma. That is a powerful statement because of how we all go through it as spoonies and how we have grown to both ignore it and move on beyond and above it.

We are stronger than they are and they will ever be. We incorporate stigma into everything we do as to try and hide our disabilities or super abilities as I like to refer to them. Super because we deal with them constantly and 5 minutes in our shoes would knock the hell out of anyone leaving a lasting impression which would probably end up with less stigma and more understanding of what we as a group go through 24/7.

Live like that for a while and let that sink in. We are able to do everything you do just either a little slower, with a little more care and caution but with lasting effects that could go on for hours even days.

Don’t pigeonhole me. Don’t stigmatize me. Don’t count me out. I’m stronger than you will ever be.




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