Me: “What if what they see doesn’t equate to what I’ve been telling them I’ve been experiencing?”
Also me: “Pfft. I know my truth. Anyone who thinks the version of Anna they see for the next half an hour is the normal and standard version is…”
Me: “But waaaaaaah. What if they suggest I could get a part-time office job again because I look fine.”
Also me: “Take it as a compliment when people say “Well you LOOK okay!” I have no desire to look as ill as I feel! And even my parents and husband won’t employ me so good luck getting that part-time office job!”
Me: “But I posted a photo of me standing on the garden again! I should go back and edit in a ‘Disclaimer’ because otherwise everyone will think…”
Also me: rolls eyes at self “Give. Me. A. Break!”
Anyone else the same?
It’s a constant process. I care far less now than I once did but like most things, it comes and goes. On the days I’m not feeling so sure of myself, it can feel like people are implying I’m not as unwell as I claim to be when they state “You look okay though.” But in my experience, so few people over the past decade have said those words in a way that wasn’t meant as a compliment.
The way my M.E. so often presents itself is not invisible at all. My legs buckle a lot, my eyes seem to actually change colour, there are blotchy rashes on my skin, my hands curl in on themselves as there’s no energy/strength to stretch out my fingers, my speech slurs, my face looks grey/pasty, my breathing is laboured, my posture changes…
But there are times when it is invisible, particularly to the very few new people I might be introduced to.
It’s hardest when it comes to medical professionals and benefit assessments. But let’s not even go there!