Do you ever feel living with a chronic illness means also having a 'secret' life?
One life which is 'acceptable' and the other which is not?
The acceptable life you're allowed to share with others and the other one, well it must be kept almost secret?
I sure do and find it extremely frustrating !!!
Unfortunately, the acceptable life, the one I can share the events and happenings of, the one people are willing to accept, is the not the real one. It is the one made up of carefully planned events -- one next week, another the week after that, etc. These are not large events either -- perhaps a family gathering or even just a trip to the grocery store. Things most people do without any thought or even on their way home from work. I, on the other hand, must carefully and purposefully plan these events and then plan for these. This acceptable life, is the one I must give the absolute best version of me that I am able to give (and sometimes even then, it doesn't pass as acceptable). In order for this to happen, in the days leading up to the event, I must conserve my energy, I must be on top of my diet and supplements and I must schedule lots of rests, especially the day before.
I must work throughout the event too, continuing to conserve my energy while there -- not moving around too much and staying well within my energy envelope, at all costs. It doesn't end there either because I need to plan a complete day of rest after the event, to recover from the event and to ward off a complete crash that could land me in bed for days or weeks. This is when I return to my bed and begin entry back into my secret life.
The secret life is my real life and the real me. This is the one my immediate family gets to see. It's secret because, it's the one that nobody else sees or more accurately, the one they don't want to see, the one they refuse to see, the one they refuse to acknowledge exists.
If it were only a few people, groups etc., it would be easy to circumnavigate around them. It's not though, it spans across all groups of people -- friends, extended family, co-workers, neighbours -- the list goes on. I can't even get a Dr. to see the real life I live. Their outright refusal to learn about, understand or care what I go through speaks volumes. (This goes for a lot of us with chronic illness).
Did I mention this is frustrating? If I wasn't so ill and in so much pain, I may try to make it bearable by getting into my "secret life". Perhaps I'd have a cape and a mask and go through all sorts of exciting adventures....
... But I don't.
There is no cape, no mask, no exciting adventures -- only getting through each day the best I can. Even on the good days, the one I've planned for and feel I've had success with, quite often seem to look different to others, like they actually belong in that secret life, rather than the acceptable one.
I had one such day recently. I was giving my very best "performance", being the best version of me I could that day, one that I'd prepared for the very best I could. It obviously wasn't up to their standard though. I wasn't doing as much as some of them thought I should and I came under their harsh judgement for not doing enough. They saw me sitting in the chair (what I was really doing, was saving and stretching my energy). They complained I wasn't doing enough, that I should be up helping, doing more. They did not care what I had gone through just to get to that point. No, *that* part is for my secret life, the one they refuse to acknowledge or discuss.
I know I am not alone as everyone who lives with chronic illness lives through these things. It's a way of life for us and we do the best we can do with it all.
I do have a message for these folks though, the folks who have chronically ill people in their life but for whatever reason can't or refuse to see what they go through.
It's time to wake up folks!!! It's time to pull your head
out of the sand!!! It's time to look around and truly see
the 'secret lives' your loved ones are living. Please know,
we are NOT lazy. We do the absolute best we can do
and then some. Please take a few moments to really
understand our whole life and what we go through daily.
Hopefully none of you ever have to endure what we
do -- we wouldn't wish that on our worst enemies -- but
a little understanding goes a long way!!
Working hard to keep the
Balance.....Despite the Chaos!