A few weeks ago I had a treatment that finally allowed the horrid flare I'd been in to calm. Since I more or less went from healthy to hell - flare in the blink of an eye, certain members of my family are unsure how to handle me being diagnosed but not flaring. Any thoughts on how I explain to them that the condition is chronic and is not something that will go away? (They've read the literature and been to the doctor's appointments... they STILL function as though "flare is gone = cured = diagnosis may as well have never been on my medical chart".)
I am open to any hints because I sound like a broken record. "My diagnosis is chronic and is something I will live with for the rest of my life but this particular flare finally calmed". It doesn't sink in. Ever.
My family doesn't get it either. Even mu hubby who lives with me often loses empathy. I am mostly ignored by my family. Sometimes i just cry because i know they dont want to hear about my chronic pain. I don't have answers. I have lived with this forever and family just don't understand still. They think i have choices regarding what i can do, and if they understood they would be helping me.
My family & hubby also forget that my issues are chronic and will worsen. I shared the links above to help you. But even sharing them with family to read doesn't sink in. It's very very hard for those who aren't walking in our shoes daily to comprehend the depth of our illnesses. My doctor's have even scolded my hubby for thinking there is a cure. And a family member thinks my upcoming neck surgery is going to be a magical "cure-all, back to normal" change for me. Granted the cervical disc could be causing several symptoms, symptoms are not diagnoses and they won't go away. My hubby use to go to every appt with me & because of hearing it from the docs he is my biggest & best support. But he actually refuses to go to my rheumy doc anymore because she's scolded him for making dumb remarks basically. Lol it hurt his ego. I'm really afraid this is just another burden we must bear, to constantly re-educate them. Hugs & prayers! 🙂💕🙏🌼