Trigger Warning: medical talk, mentions of past neglect
We debated what topic to post this under for awhile, so please let us know if there's a better spot.
Our health has deteriorated more. Our tests are coming back abnormal but "fine" according to some of our doctors, while others are very concerned about our current state and symptoms, and are trying to connect us to doctors that can help. Our insurance, that we have through our birth-giver(BG), has also been dragging it's feet and making getting imaging tests done very difficult. Our BG knows this. We recently had some extended family (aunt/uncle, two cousins + spouses) visit our parents and sister's house. For weeks, our parents kept asking/rephrasing/telling us that they would pick us up and take us to their house for the visit. We said no every time, and it took explaining our difficulties riding in the car and the several appointments we had that week for them to back off. Monday was the last of that set of appointments. The appointment did not go well.
Well, our BG texted us asking about it shortly after we left the hospital. We didn't respond until today, when we were able to have our therapist support us through the response. Our BG called us after we responded. We called her back once our session was over, and we had a long conversation about our physical decline and difficulties with getting adequate/consistent care. For context, until we were living with our husband in a city two hours away from our parents, they would deny, delay, and obstruct us from receiving medical care. So these conversations are new, difficult, and scary. When talking about some suspected diagnoses, our BG said "you know, I've been wondering if you had X condition for awhile now". When we asked what "awhile" meant, she said "since middle school". That was deeply infuriating. Near the end of the call, she also said "I'm sorry for giving you a broken body". That one hurt. It still hurts. It's been hours and we can't shake it off, ignore it, or bury it. She didn't sound sorry. Her voice was steady, tinged with pity and annoyance. She didn't, or rather wouldn't, acknowledge that her medical neglect is what put us in this situation.
Despite this, we must remain in contact for survival. As maddening as it is, the slips of "oh I saw signs of that X years ago" that we occasionally get from BG are our best chance at filling in some medical history/only chance at validation that our issues are largely ongoing from childhood. We've been doing everything internally that we can to make our peace with our situation with our family, talking with our therapist about it, the works. Reminding ourself that once we can't remain on their insurance, we can let them go because they won't have anything for us at that point. Hopefully by then, two years, we'll be able to work again. But until then, we are still struggling to deal with them. Even with making peace with it, limiting contact, only giving them necessary information; they still find ways to hurt us and make us feel small.
Our left leg works at 50%. Sometimes, it loses function entirely. We are in constant pain from multiple conditions. And yet, no matter how often we remind them or how well we explain things, our family, and BG especially, seem to be under the impression that we're just not trying hard enough. They don't see how bad it really is, and as much as we are honest about how bad it is, we refuse to perform rock bottom for them. After the "sorry", BG spent another 2-3 minutes reiterating "you have to advocate for yourself" and "be annoying about it". But she can't see that she abused that fight out of us. We tried, many times as a kid to be heard and taken seriously about our health. She was the one who dismissed us and gaslit us about our concerns. She was the one who pushed us to think everything wrong with our body was "normal" and that we were just "weak" and "lazy". They just don't get it, most likely never will, and are somehow both aware and oblivious to their hand in our current state. It's exhausting. And we feel so much more alone when they do things like this.