When explaining my invisible illnesses to someone, I usually get a lukewarm response from the person I’m talking to. They are seldom dismayed, they are skeptical at times, and almost always offer advice on how to treat the illnesses because their Aunt Gertrude had it and was healed by drinking vinegar, or eating raisins soaked in gin. I’ve heard all sorts of remedies, none of which hold any merit.
I think if they could see me in a full-blown flare they would take a different approach towards my illnesses, but like most people with invisible illnesses, I hide away at home, in bed, or in a recliner, trying to cope with the pain and agony of what is tormenting me at the moment.
I’ve missed my grandkids’ ball games, band recitals, and school functions. I don’t like missing these things, but I don’t get told about them often either. Mostly because my family assumes I’m too sick to attend. They do not know that I have good days and want to attend. But I can see their point of view too, as I have had to cancel my plans of going due to illness and or decline altogether, so I’m sure they just assume I will decline again. I no longer get my feelings hurt about it. That is a waste of emotion. I just go with the flow.
I try very hard not to wear my heart on my sleeve. It has taken practice, but it is a great idea for us with invisible illnesses to try not to take things people say or do too seriously. They are usually trying to help us in their only little warped way. Unfortunately, they do not have a clue as to how to help us. It takes a great amount of time for us to figure out how to help ourselves and expecting others to understand what helps us is asking way too much of them. They have their own lives to live. And though we crave understanding, it is most likely not going to completely happen. I have multiple invisible illnesses, but only one stands out to my family and friends, IC (interstitial cystitis). I am grateful that they have learned as much as they have about this disease.
Be grateful that someone has taken the time to learn as much as possible and has tried to help you. Whatever you invisible illness is, someone who loves you is probably struggling to understand the illness. Give them credit for trying.