It's heart-wrenching to experience the loneliness living with a chronic illness brings. It's difficult, if not impossible, to fully explain what it is and how it feels. When the illness is not understood, or worse -- not believed it even exists, an accurate description of how that feels, defies words.
Sometimes, we take on too much and end up crashed because of it. We're then left to our own devices to pick up the pieces.
From my own experience, I've found the whole living with / explaining / finding balance goes through its own life cycle. When I first became ill, I started off with the idea of educating everyone, whether that was my family, friends, co-workers or acquaintances. Their lack of knowledge about the illness had to be the only reason for their lack of understanding and seemingly cold shoulder.... right? I figured as soon as I educated them and explained it, they would surely get it and be much more understanding.
I set out on this quest armed with the best information I could find along with great intentions. My arsenal included websites, brochures and a well rehearsed blurb about it. I shared links, repeated the blurb, shared more links, handed out brochures and repeated the blurb -- over and over and over again. All these things seem to produce the same results, none of which were my desired results. It left me scratching my head on just how my audience could not grasp what I was saying, not even a little bit. It seemed akin to saying to someone on a bright sunny day, "The sun is really bright today" and having the response, "Sun? what sun? there's no sun today!" Something that seems so obvious, isn't.
Then I moved on to realizing it was a waste of my precious energy trying to educate people. They never seemed interested or able to understand it anyway, so why bother? I then compensated by spending time (and energy!) trying to fly under the radar. This was a huge balancing act accomplished by tweaking things in order to work around my illnesses, while still trying to fit into society by finding a balance and compromise between the two. This was not easy.
It gets worse though. Once this "skill" has been (seemingly) "mastered", it appears to the outside world that we're ok, that we've been healed or that we never had the illness to begin with. We push on ahead only to suffer a personal loss in the form of a crash.
We then revert back to the educating phase. With the same results. Round and round and round it goes.
Frustrating it is.
We cannot make people listen, be interested in what we're saying or understand us. I've found the best way to avoid the frustration of it all is to set boundaries...and then keep them. This is an easier process for some but with a bit of practice it becomes much easier.
The process involves:
We teach people how to treat us by what we allow and how we allow them to treat us. If we continue to allow them to not listen, to sweep our illnesses under the rug and ignore the seriousness of it all, then they'll continue to treat us in that manner.
Be prepared though as sometimes when we're exercising our new-found skill of staying within our boundaries (usually in the form of saying "no" to some request), we're accused of using our illness as a convenient excuse for getting out of doing something.
Stand firm.
WE have all the pieces of the puzzle and see the big picture. They do not. What is nothing to a healthy person can be monumental to us. Staying within our energy envelope today could mean the difference between a crash or having enough energy for tomorrow.
Setting boundaries in order to keep the balance despite the chaos!
Sometimes, we take on too much and end up crashed because of it. We're then left to our own devices to pick up the pieces.
From my own experience, I've found the whole living with / explaining / finding balance goes through its own life cycle. When I first became ill, I started off with the idea of educating everyone, whether that was my family, friends, co-workers or acquaintances. Their lack of knowledge about the illness had to be the only reason for their lack of understanding and seemingly cold shoulder.... right? I figured as soon as I educated them and explained it, they would surely get it and be much more understanding.
I set out on this quest armed with the best information I could find along with great intentions. My arsenal included websites, brochures and a well rehearsed blurb about it. I shared links, repeated the blurb, shared more links, handed out brochures and repeated the blurb -- over and over and over again. All these things seem to produce the same results, none of which were my desired results. It left me scratching my head on just how my audience could not grasp what I was saying, not even a little bit. It seemed akin to saying to someone on a bright sunny day, "The sun is really bright today" and having the response, "Sun? what sun? there's no sun today!" Something that seems so obvious, isn't.
Then I moved on to realizing it was a waste of my precious energy trying to educate people. They never seemed interested or able to understand it anyway, so why bother? I then compensated by spending time (and energy!) trying to fly under the radar. This was a huge balancing act accomplished by tweaking things in order to work around my illnesses, while still trying to fit into society by finding a balance and compromise between the two. This was not easy.
It gets worse though. Once this "skill" has been (seemingly) "mastered", it appears to the outside world that we're ok, that we've been healed or that we never had the illness to begin with. We push on ahead only to suffer a personal loss in the form of a crash.
We then revert back to the educating phase. With the same results. Round and round and round it goes.
Frustrating it is.
We cannot make people listen, be interested in what we're saying or understand us. I've found the best way to avoid the frustration of it all is to set boundaries...and then keep them. This is an easier process for some but with a bit of practice it becomes much easier.
The process involves:
- Educate -- Explain briefly what it is, but explain only once (unless they ask questions and generally want to learn about it).
- Offer no more explanations. You've explained once and if the other party did not understand or listen, it's up to them to ask for clarification etc. We are not responsible for their listening skills (or lack thereof)
- Listen to what your body is telling you and act accordingly. If the thing you were able to do yesterday will be too much today, then say so.
- Learn to say no
- Learn to not feel guilty about it
- Stick to your decision
We teach people how to treat us by what we allow and how we allow them to treat us. If we continue to allow them to not listen, to sweep our illnesses under the rug and ignore the seriousness of it all, then they'll continue to treat us in that manner.
Be prepared though as sometimes when we're exercising our new-found skill of staying within our boundaries (usually in the form of saying "no" to some request), we're accused of using our illness as a convenient excuse for getting out of doing something.
Stand firm.
WE have all the pieces of the puzzle and see the big picture. They do not. What is nothing to a healthy person can be monumental to us. Staying within our energy envelope today could mean the difference between a crash or having enough energy for tomorrow.
Setting boundaries in order to keep the balance despite the chaos!
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