It baffles me that no matter how much I speak and write about chronic illnesses and my experience that my loved ones still don’t understand the meaning of incurable.
I was at the hospital yesterday for another blood tests. I’ve been having blood test regularly for over a year now. I even have my a specialized nurse that does the blood tests for all my doctors. Both my parents and my best friend were surprised I was still getting them. I tried once again to explain that I have an incurable chronic illness. Yes, it can be managed with medication, but I constantly have to be monitored to make sure that my levels are correct and adjust my prescriptions as needed. I have multiple doctors who follow me and we haven’t successful stabilize my levels yet. It takes time. Some bodies are more difficult than others.
Some people question my husband about my health and he doesn’t know what to answer. He finds the overwhelming amount of doctor appointments and information confusing to follow. I find it confusing and it’s happening to me.
If I would have one piece of advice to give is stop asking if we are all better now. We will never be cured. It will never be perfect. We just get better at living with it.