Chronic illness is forever.
Symptoms may come and go, energy and mood and abilities can and do fluctuate and it can often feel like the only people who really do understand what you are feeling is other people who have chronic illness.
The model we have for illness in our society is pretty basic. You get sick and you recover or you get sick and you die. Unless you have an obvious, visible disability or sign of the illness, it becomes invisible. As the people living in our bodies, we know how it feels, we know how much it can change day to day or even, moment to moment and we need to make many compromises, changes and adaptations to continue to live and function as best and happily as we can.
I recently asked my wonderful Facebook community to share what they believe people should really know and understand about life with chronic illness and the response was amazing. I am sharing all the responses here and I know that they come from the heart.
Life with chronic illness is that much harder when the people around you just don’t seem to understand or even want to understand.
So if you have someone with chronic illness in your life, a partner, friend, family member or co-worker, here is what we really think you should know.
So many things, but starting basic: that it’s CHRONIC. No tricks, just the actual definition of long-lasting or recurring, perpetual, continuing indefinitely. No matter how many times I try to say or explain that I have a chronic illness, there is still an attitude of, “oh, you’re still sick? You should be better by now.”
It’s not a choice, I’m not being lazy.
Oi – so many things. For me, it changes everything! What you eat, where you go, how you plan and most importantly, who you are.
Our ‘normal’ is not the same as your ‘normal’.
That you miss who you used to be. The person that was carefree. The person that could travel the world, have dinner with friends and just smile and enjoy the flow. It would be great if I didn’t have to plan every event, to make sure that I can eat something when I get there, or make sure I have enough energy to get through the outing. That hearing you need to “toughen up and think positive” doesn’t change the fatigue or pain or illness. As we are trying, that every time we dream up a new plan for curing ourselves with lifestyle choices. It takes positive thinking and hope to dream up the next plan. For me I must be up to plan 212 by now.