It is never not baffling that there are people who still imply, even unintentionally, that I am choosing to live my life restricted by illness.
I cannot tell you how insulting it is that some people still assume I have a choice over the severity of my illness.
If I am too upbeat, my reality is disbelieved. Too maudlin and my physical health gets attributed to a low mood, or it’s suggested I’m focusing too much on my symptoms and manifesting them.
I can’t win.
And so, because I can’t win, I’m learning to care less about trying to get others to see the truth of my reality.
It IS insulting for people to imply I have any choice over my M.E. Incredibly so. In-fact their comments do damage. But I have no control over how others perceive me. It’s been freeing to realise that.
If they decide that the version of me that was able to hold a 10 minute conversation with them, is the version I am all the time, so be it. Similarly, if someone wants to make assumptions based on a photo on social media, so be it.
I have spent years and countless amounts of time and energy trying to add a disclaimer to social interactions or activity. It’s time for me to stop with the internal battle, and the constant desire to make sure others understand that behind the scenes there is a very different story.
I’m learning that it’s so often a pointless exercise. No-one without lived experience of my chronic illness (and my particular case) can ever truly understand. That’s the way it is. The only way for them to truly comprehend this life is for them to live it, and I wouldn’t wish this on them, even if it’d save me from ignorant comments and constant misinterpretation.
I know the truth. That has to be enough. I can’t battle with the misinterpretations indefinitely. I have to try to find some peace.
Of course it gets trickier when applying this to medical professionals. We do have something to prove to them. I personally avoid seeing a doctor as much as possible. Their neglect has helped heaps with me being able to do that!