You say: “You look fine” =I know you are just trying to be nice, but honestly for someone with a chronic illness this is not a compliment. This is what we hear: “I disregard anything that you have gone through and are going through/ you are a liar or it is all in your head/ since you look fine you must not be that sick…” See I know that people who did not know what I used to look like don’t know how much weight I have gained from inflammation and toxicity, they don’t see that I feel like I am living in an alien body that has betrayed me in every way, they can’t “see” all the pain and discomfort.
You say: “You should just get out and do something/ move more/ just go to that event…activity..or what have you”. What you don’t know is that this is not like having a cold, a flu, or any other illness. Do you know what it is like to have fatigue that seems to seep into your very bones? Remember that moment at the end of the night when you are about to fall asleep and your brain is shutting down? Imagine feeling that every waking moment. Do you know that feeling when you haven’t used a muscle in a very long time and then work it out hard? The aching throbbing pain the next day every time you move, or even just sit? Imagine feeling that every moment of every day.
And yes we are sorry that we flake out on you when we have made plans, or the fact that you just never see us socially anymore. Because you see if we are working, that is using 100% of everything that we have, physically, mentally and emotionally. And fortunately/unfortunately for those of us that have reached the stage when we have both good and bad days, we don’t know how we will feel a day from now, or sometimes an hour from now.
It is hard when the general public seems to understand someone who is going through say…something like cancer, but cannot comprehend someone who has a long term chronic illness like Lyme, when we simply don’t “look” how we should look.
Maybe someday when there is more awareness it will be easier. For today I am just grateful that I am able to push through and function, which is a huge improvement from even about 3 months ago, and thankfully I “look” fine 😉