Why does nobody believe me? One of the main thrusts across cyberspace at the moment is the concept of invisible illness. As a sufferer of MS, my symptoms are life changing yet vague. Who believes me when I have to groan and grimace when trying the simple act of sitting down or getting up? Does anyone know that my legs are aflame with the fires of hell and damnation? When I’m lying in bed late into the morning, who can acknowledge that the great beast of fatigue has come calling to lean its great heavy carcass on my shoulders?
Who knows about the mental strain of understanding that you are failing as a physical being? I get looks of suspicion and disbelief. I am just making this up because I’m lazy and disrespectful. Your house and your living room is a prison. Your sofa is a cell.
Those around you may be ranting and raving about the pressure and burden of care. Soon it becomes a major obsession and more important than the care. Let’s gripe and grimace about the things I have to do because you are unwilling to do them.
Yet I sit in my chair wanting to help and make peace. But the barrage continues. Does anyone understand about sharp noises? The living room is my world. I like a peaceful world. You can be focused, hard working and peaceful. Why do you have to be so angry? Why do people who are meant to understand talk about me in the third person when I’m in the same room?
Why do they never ask me where the tomato sauce is or which shelf in the fridge do we keep the mayonnaise? Do I not know because I’m stuck on the sofa? And why am I stuck on the sofa? Because there’s a bloody great table in front of me and to move it would be like shifting the axis of the earth.
How about letting me go to the dining table so I can prepare some vegetables and help with the cooking? Is it so important that I make more mess than it’s worth as opposed to giving me some sense of usefulness? Just sit there and blog because because that’s all I can do. Keep me believing that I’m useless. The ranting really helps to confirm it.
The house I’ve provided from the fruits of my labour is not a shithole. It’s the best I could do. The best from a career dogged by MS yet I’ve had the prudence to prepare for early retirement and cater for those around me.
What can be denied? The indignity of being called “him” or “he”? The pains of my illness? Broken promises? Being dismissed, ignored or ridiculed? Being mocked for asking for anti-depressants when 90% of people with a chronic illness get depressed? Welcome to multiple sclerosis and a host of other invisible illnesses. Why don’t people believe me?
Thank-you for reading.