Often I refer to having a hidden illness or an invisible one. To be fair, to some extent it is accurate, there aren’t many signs of illness if you were to look at me. I have dark circles under my eyes and I am always pale, those are some of the more easily noticeable signs that I have ME. It’s not like having a cast on a broken limb, if you don’t see it, to most it doesn’t exist. I was thinking about the fact that a lot of people with ME are housebound if not bedbound and that they aren’t invisible they just can’t be heard. It made me think that maybe by calling it invisible it diminishes the severity of it to the wider public. That might be how we end up with the just tired slogan most of us hate.
My illness is apparent by the things missing day to day. My independence, my lack of job or education, my lack of energy and spontaneity, my level of cognitive function and reliance on many for everything. Lastly, my use of a wheelchair and other aides. If you look at the full picture there is so much to be seen there is so much to notice. There are only a few instances where my need for help is visible, as the wheelchair for example.
I have an illness that hides in my body that isn’t like a tumour, it isn’t just tethered to me encroaching on areas of my body. It runs through my veins and all systems in the body. It isn’t a separate entity, my ME and Me are entwined within. Until they know exactly what ME/CFS is then I assume it is throughout my body based on my symptoms.
You might not be able to see it from the outside nor from the inside to the untrained eye but it is visible. You just have to look a little closer.
Leave me a comment and tell me what you think on this topic I’d love to hear your point of view.