Chronic Illness Makes You Feel Like a Liar

I always feel like a liar. Not because I'm lying, but because chronic illness is so variable, unpredictable, and always changing. 

For instance: 

Example A

Some mornings I would be so ill that I would cancel classes or meetings or appointments for that day.... but then 5 hours later I would feel better. So, not wanting to waste some suddenly-decent hours, I would go out and do something I enjoy - because those good hours were few and far between. 

Lookin' like a liar. 

Example B

My dietary restrictions constantly change. For a LONG time I had to stay away from various foods - like carbonated beverages, red meat, white flour, spicy foods, alcohol, even things like drinking through straws. But these restrictions come and go based on how active my disease is at the time. So maybe a few years ago (or even a few months ago) I couldn't have any alcohol, or couldn't eat anything spicy, or could have been sent to the ER from just a few bites of pizza, and lately I've been able to enjoy those foods. 

Lookin' like a liar. 

Example C

A few years ago I was so ill that I was an ambulatory wheelchair user basically whenever I left the house. That means that it is more for transportation, based on pain, weakness, and utter exhaustion. Now, because of some medication changes and some incredibly painful procedures, I have been using the wheelchair much less, and have even worn heels a few times. 

Lookin' like a liar. 

Chronic illness is this massively complicated, entirely subjective human experience that can look, very literally, unbelievable. One day using a wheelchair, three days later walking in heels, one day unable to eat anything but soft foods, a week later going out for a steak dinner, or even unable to force myself out of bed in the morning, to then be dancing and baking up a storm in my kitchen only hours later. 

How do you get people to understand that there is no faking happening, there is no using illnesses as excuses, there is simply going with the flow? I don't get to decide how my body will react to anything, so I let my body kind of lead the way and take advantage of as many of the good moments as I can. And things change very rapidly with any inflammatory-based disease. We have to have backup plans for our backup plans and every plan is tentative. We watch our language so that nothing is expected - so that if our body changes whatever course we're on, we're disappointing as few people as possible. 

I promise - I'm not lying, everything is just a constant ebb and flow that I can't always keep up with. 

❤