We are taught from a young age that if we work hard, if we do what is expected of us and even go 'the extra mile', everything will work out.
If you train hard enough, you win.
If you work hard enough, you're successful.
If you want something enough to focus only on that one goal, you'll eventually reach it.
In a religious perspective, we are taught that if we are good, kind, and follow the Commandments, that we will be rewarded in the afterlife.
But here's the problem: that line of thinking doesn't work with chronic illness. It doesn't work with autoimmunity.
A person can do every single thing right, be strict and stringent on every mandated measure, follow intricate diet plans, doctor's orders, and natural remedies, listen to what they are told - never cheating, never wavering - and that person could want and strive for good health with every breath that they take and still never reach that goal. It isn't like magic where if you hope for something long enough it appears, or if you work hard enough you will succeed.
Some people get better, some don't. There is no magic formula. Working harder than anyone else does not guarantee you a positive outcome. Following all of the rules does not guarantee you a positive outcome. Putting 100% of your focus into being 'healthy' does not ever guarantee you a positive outcome. Disease doesn't care. (I love those Shingles commercials because of that message).
I have witnessed some of the most heartbreaking comments on what are supposed to be 'support groups' for various chronic illnesses. These comments can range from:
"if you're still ill while on such-and-such diet, then you're obviously cheating or doing it wrong", to
"you're not trying hard enough",
"you're being too negative",
"it worked for me so it has to work for you"....
The list goes on. And on. And on.
Modern healthcare has given us the illusion of control. The truth is that, as advanced as we are in treating and managing our ever-changing bodies, we cannot control every single cell or strand of DNA. We will likely never be able to fully understand every single part of our own human systems and all its variations, so full control is impossible.
Conversations, advice, and support should not revolve around an undertone of judgement; of blame.
Yes, there are certain things that we collectively know currently, like the fact that smoking causes cancer, or that over-eating causes weight gain. It is possible to reduce your chances of developing certain illnesses, and even preventing them, but there is no complete answer for any chronic illness. There is no one-size-fits-all remedy (and really, when does OS ever actually work?).
Yet, after living our entire lives believing in these mantras of working hard and wanting something enough and having determination that will get us everything we want in life - it is no wonder why chronic illness is such a baffling concept. We can't seem to accept the fact that you don't have to have done anything wrong in order to be ill. Mistakes don't have to be made to be diagnosed with something horrifying. You don't have to be a bad person to suffer. And no matter how hard you try or how much you want it, good health is never a guarantee, nor is it permanent.
Sometimes, ill health is simply a malfunction that cannot be fixed, tamed, or 'positive thought'-ed into submission. It just is. So you ride it and do your best with what you have and do everything right that you can and hope for the best while trying to enjoy some joyous parts of right now.
No one knows all of the answers.
No one.
Those who pretend to know every right decision to make are either lying or have been particularly fortunate in their current state. It does not mean that they wanted it more, tried harder, were more positive, or followed the rules better. It means that whatever has happened to them, personally, has worked up to that moment for their own bodies and their own highly subjective experience.
It also does not mean that they have suffered less on the way.
All this means is that their experience is entirely different from yours - and we should support one another through these different realities. Tips and strategies are best given and taken when judgement has been removed.
When have you felt unnecessarily judged?
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