Please forgive this angry blog in advance but here goes. An issue I cannot grasp is when some people, even after having been told several times of a condition’s INCUREABLITY, (not sure that’s even a real word but if not it should be), still expect you to ‘improve’. Without mentioning any names or places or specific occasions (*DISCLAIMER*) – let me give you a few examples of what I mean by this. Although I’m all too well aware you will likely have your own for reference.
In my case there is often an expectation I will be able to ‘perform better’ (and I’m not talking about within the bedroom here so draw your own conclusions). This is an impossibility as I already carry out every task to the best of my ability. Including piss poor rhyming it would seem. I try with all the patience I can muster, to express just how damaging and frustrating it can be to tell someone with a disability they should ‘try harder’. Mainly because we already are. We are trying harder than you. We have gotten out of bed and are completing the same tasks as you WITH a chronic illness. We are already better than you in so many ways. So why do you make us feel worthless?
When you offhandedly mention that we could try harder, you make us question ourselves. Maybe we are coming off as lazy? Maybe we could make more of an effort? That is a tough situation to put someone in. Not to mention dangerous. How much further should we be pushing ourselves in your opinion? So far we end up in the back of an ambulance? Maybe a morgue? Yes I am being dramatic here I grant you, but when your best isn’t deemed good-enough it’s completely and utterly soul-destroying. ESPECIALLY when this apparent lack of ability is caused by something totally out-with your control.
When you tell us we should/could try harder, you are basically asking us to ‘improve’ our disability. Perform an impossible feat. This may sound dramatic to those of you without an incurable illness, but the invisibility of a chronic illness like Crohn’s allows for a startling amount of ignorance. Would you ask someone who was paralysed from the waist down to ‘just have a go’ at walking? Didn’t think so. So why then is it deemed acceptable for someone to query why my intestines don’t work as they should?
Let me finish with this: I have a full time job. I work long hours in a stressful environment. My condition(s) mean I struggle with pain mainly in my stomach, legs, arms, and hands, I experience almost weekly migraines, my medication means my head is often fuzzy and I suffer memory loss, extreme fatigue means I struggle to stay awake around 2pm each day and I am constantly and consistently exhausted. Did I mention that I can’t tolerate food and am either on the toilet or throwing up in it? Oh and that along with anemia and low blood pressure means I’m dizzy almost all day long.
I’m not mentioning all of this for sympathy – I know I am lucky as there are people who face much worse every day, but I mention it to reiterate the point. On top of all of that, what exactly would you like me to improve? I’d say I’m doing pretty well just remaining conscious to be honest.