I kept my family and my health problems separate for quite a while until it was impossible to hide. Even after, I only passed on the information that I was being seen by doctors and we were “working on it”.
Last year they knew I had been in the hospital several times, but I told them I was fine. I seem to be taking on the same attitude as doctors. It’s not life threatening, so I’m fine. April of last year I was in the hospital for two weeks, and by the end of the first week my parents decided to drive down. It was then they learned about my kidney disease over a year after my initial diagnosis. As far as they knew, I had Crohn’s disease and that was it. By the time they left, they knew everything, to include my neurological problems. Too many questions, too many check-ins. I get sick of talking about it, mostly because they think I should be better by now. No matter how many times I explain how my illnesses and the health care system works, we dance around in the same irritating circle over and over again.
I’ve had 4 diagnoses since then; POTS, osteoporosis, Autoimmune Hepatitis, and a seizure disorder. I didn’t tell them about any of them because I didn’t think they needed to know. When Manchild dropped me off, he passed the caregiver torch onto my parents. He of all people should know who takes care of who in this house most of the time. He brought my Mom up to speed and told her about the seizures and POTS, and if I need to see a neurologist or cardiologist while I’m out of town, I can call my doctor for a referral.
Never mind the mention of seizures that made her flip her lid, the POTS scares my Mom. Again, I told her it’s a benign condition, but she keeps calling it a heart problem like I’m going to have a heart attack. I frustrate her because I don’t tell her everything, and I don’t tell her everything because she can’t handle it. She doesn’t sleep because the stuff she knows makes her too anxious. It’s too much stress for her, and is more stress for me to deal with.
I heard her talking on the phone to someone and I came up in conversation. “You know, she has heart problems but she doesn’t talk about it.”
Why would I? I told her the longer I’m on my feet, the more exhausted I get. Maybe I’m oversimplifying it a bit, but I was trying to convey that I need to rest frequently, and I can’t shop for hours on end, but basically I’m okay. I’m just miserable.
I eat, sleep, and breathe illness. It’s always on my mind, whether I want it there or not. I couldn’t ignore it even if I tried. The only choice I have is when to talk about it, or when not to. I’m not avoiding talking about it because it makes me angry or upset. I’ve said all there is to say to them without being superfluous, and there’s no sense in complaining to people who already feel overwhelmed.