It came to me today as I have been reflecting on how frustrated and worn out I have been lately with this multi-decade battle with illness that I am at war every moment of my life….with myself.
THIS is the essence of an autoimmune disease….with chronic invisible illness, being in an internal battle every day of your life with your body. This is what is hard for others to understand when they observe you from the outside when looking at you or talking to you. You seem normal, you are “functioning”, besides the fact that you tell them that you are horribly fatigued, or in pain, or can’t eat most foods, or can’t climb those stairs, or can’t hang out this weekend….
What they don’t see is that you and yourself really don’t get along that well and it feels that you are an alien to your very body and can’t escape the constant pain or inflammation or discomfort and your very waking existence is a trap inside a contraption that causes unending suffering.
How do you explain this to people? How do healthy people who have only occasionally been sick with the seasonal stuff even begin to contemplate a myriad of systemic symptoms that don’t just run their course and stop? Maybe if we played the Groundhog Day game and asked them to imagine the worst day they can remember with something like the flu and then picturing they had to live that day over and over for year after year.
I hope posts like this can help teach those who know people who are suffering inside in what we go through and how it feels.
Sigh. Can you tell I have been a bit frustrated lately?
Yes I have made progress. Yes the Lyme and Coinfections are getting better. But I still have a lot of things to pursue with why certain things aren’t getting better. But I am on a good track with finding a new ND clinic that works with genetics, food allergies, gut disorders, and autoimmune conditions. They will work on the pieces that my Lyme doctor cannot and I am having a ton of tests.
There is always hope isn’t there?
(Pic of my pup because she makes me happy)