Invisible Illness Week
Invisible Illness Week (which was last week – I write slowly) promotes an awareness of invisible illnesses; the ones that not many people notice or understand, the ones that don’t attract a lot of funding, the ones that have a decimating impact on lives, but don’t have an obvious sign. Nothing seems missing; there are no gaping wounds, no signal to alert onlookers that life for this person is different.
A lack of awareness of these illnesses has a serious impact on those affected. This goes beyond friends and family not providing sympathy, help or understanding (sometimes even dismissing a serious illness as ‘faking it for the attention’) but extends to community members making assumptions about the apparently able bodied person using the disabled parking spot, or the person in a wheelchair who can stand up to reach the items on the top shelf. Critically, the low profile of these illnesses can lead to slow or missed diagnoses when health professionals are not aware of these condition, and this is exacerbated by limited funding for research, which slows down improvements in diagnosis and testing, and most importantly finding a cure.
To highlight awareness of my struggle with Chronic Fatigue Syndrome, Multiple Chemical Sensitivity and Neurally Mediated Hypotension I wrote a diary for each day of Invisible Illness Week. Few people understand what my life with a chronic illness is like. I am fortunate in that I don’t a have a great deal of physical pain, and most of all that my condition is improving (extremely slowly). I don’t have a bad life per se. I have loving parents and a dedicated boyfriend. My condition has improved enough for me to have my mobility back and I enjoy the small things in life. But… I am missing out on so much – I am so limited in what I can do and achieve. I can’t work, I can’t cook. I can’t go out with friends, I can’t go shopping, I can’t walk to the library, I can’t run. And when I do too much I pay a terrible penalty.
It is my hope that my friends and family will read this diary. I want you to know about my life. I want you to see how I am; how my energy levels go up and down, how I am capable and almost normal for a few hours but then I come crashing down after I do too much. I want you to see how long it takes me to recover from a day or two of mild activity. I want you to see how frustrated and angry I am at how limited and constrained my life is. I want you to see the good things too. My wonderful Guy who supports me and loves me unconditionally. The joy I get from seeing friends, even when I am punished for it the next day. The simple pleasures that I am so grateful for; our dog Nelson, sunshine, growing herbs, a luxurious bath, breathing.