they just don't get it

[asdis]

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.

[Blueberry]

I'm sorry asdis that your FOO is putting you through this! Those FOO shenanigans My FOO doesn't get it either although your and my stories are different, the underlying FOO nonsense sounds similar.

I'm sorry, I feel speechless about it but I feel for you, I really do. Sending compassion. And to ward off bad FOO stuff: 

[Kizzie]

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.

I am so sorry Asdis.  I have some understanding of how it feels as many here likely do. If we are the scapegoats then our families do not have to look at themselves, they can just focus on us and what's "wrong" with us.  I was the overly sensitive, ungrateful daughter in my family (I often cried or got angry when treated like you are), and that lasted until I grew up got a Bachelors, then Masters And finally a doctorate. They then switched to seeing me as the Golden Child because they could no longer claim I was a mess. It wasn't all that much better because they weren't actually proud of me, they liked the status it brought them.  Unfortunately our families are IMO broken and we will never get what we need or deserve.  Once we know that and move on, life does get better although there is for me at least a sense of sadness that I don't think will ever go away.

At least you see it isn't you, it really is them. You may not be able to step away right now but in two years as you say, you will not be as tied to them.  For right now it may be that some emotional distance from them might help - it's called gray rock and is a technique those who have to deal with narcissists use.  I used it and it really did help. It's here at our sister site Out of the FOG - https://outofthefog.website/what-to-do-2/grey-rock-safe-detachment.

Sending lots of support your way 

[NarcKiddo]

I am really sorry to learn that your health has deteriorated, and that you are forced to interact with FOO because of the health insurance. I also have experience of medics saying things are "fine" when they are not. It is exhausting. And I know what it is like not to feel able to advocate because the fight has been abused out of us. It is not necessary to be annoying about it but I have personally had validating and satisfying results when I have advocated for myself. It takes a lot of energy which you may not have, but if you can make even a very small step to protect yourself when dealing with medics it can be very validating. Mostly because their position of apparent authority may make them appear like FOO but they are not FOO and they know you have rights. So when they are called out or get pushback they have to respond appropriately. Of course in an ideal world they would treat all their patients with respect and not force us to stand up for ourselves when we are weak and unwell. It's good to read that you have access to at least some doctors who care and are trying to connect you to the right caregivers.

[Blueberry]

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".

I'm a bit better sorted today, so can write a bit more.

The above paragraph really resonates with me. The difference is marginal - just that I tried to be heard about how I was suffering emotionally in FOO (not that I used those words or even had the concept as a child or teen) rather than physical health-wise. I heard a lot about weak and lazy too, tho that was probably part of my severe depression nobody thought about dealing with.

What really resonates is your sentence "she abused that fight out of us". Oh yeah   I'm sorry that was done to you too.

[asdis]

Thank you all for responding, we're sorry you guys understand as much as you do.    Sending support and compassion back to all of you

We're able to be a bit less emotional about it now. We've been grey-rocking them to some extent since about 13 years old, and were grey-rocking them fully while we were in college and when we initially moved cities. If we were still able to work we think we'd still be able to grey-rock them, it's just since our body gave out that we've been having to talk with them/disclose more to them. They still know very little about our mental health and we plan on keeping it that way. They've also made it clear that letting them visit us is a condition for remaining on insurance/financial help; they visited on Sunday. We've been in limbo between being the golden child and the scapegoat for forever now, it's just that they've realized it no longer helps their image to treat us poorly now that we're out in the world without them.

We've been working on getting the fight back so we can advocate for ourself better and it's slow going. We can advocate for ourself decently with one doctor and okay-ish with another two, but new doctors and ER doctors are still kind of a no-go. Maybe we need to have our therapist work with us more on not defaulting to the fawn state. Maybe once we're actually getting treated for the pain we'll be able to be more present as well. It's been very overwhelming and we often feel like we're asking too much when we see our doctors, but since they seem to remain concerned we've been doing our best to keep up with it all.

We got the MRIs done last Friday (yay) and found out that our PCP had to call and fight with insurance twice; the day before and the very morning of our appointment because insurance kept trying to say the tests weren't necessary. Because of insurance issues FOO got some of our mail relating to the MRIs and that meant an extra-in-depth conversation about it all. It's weird to navigate because they can come off as genuinely concerned for a bit and then switch up so randomly, it's honestly more hurtful than if they hadn't changed at all.

[Kizzie]

Navigating the healthcare system is no easy thing at the best of times, but add in CPTSD and it can seem like an endless battle.  You seem to be doing a good job of it though I must say! I and likely many others here know how tiring and frustrating that can be.

Your experience is the reason I just finished up a project with a team of healthcare professionals and trauma survivors called "Complex Relational Trauma & CPTSD: Closing the Gap in Healthcare - A Guide for Healthcare Professionals" in an effort to prompt healthcare institutions and professionals to do better by us. I will be posting the guide here at OOTS in the next few days so you can have a look. One take away for survivors who read it is that you are not alone in having difficulties with healthcare and there are some things you can do to improve things.

In any event, good on you for your efforts to manage your health and doing what you can to get providers on your side.