Well Meaning Family Members

Coping
#1

Yesterday I was out with a family and the topic of how I’m doing and how therapy is going at the time came up. Honestly things are starting to look up but I also had undiagnosed health issues before all of this that even outside of it are starting to return to their old ways of inflicting endless neuro-psychiatric torment upon me on top of PTSD. Things are very rough right now still and life doesn’t seem to care either as the world rages on dragging me along with it.

They aren’t a bad person by any means and didn’t make it all about how they feel but they were upset about not being able to truely help me. There are things I can’t talk about with them at the moment I have issues with because I’m just not ready to and the rest of the situation is so complex that I couldn’t possibly break it down for them into anything simple that they’d be able to understand (they don’t have chronic illness or anything mentally crippling them, just a average healthy person for their age). So they have a very low understanding of the intersection of mental health and chronic illness where they think it can just be talked through and entirely solved. They key word is chronic, I can do things to live a more normal life but I have hard limits and progress moves very slowly. Yes therapy helps a bit but when I expressed that I’m largely doing well on my own in between he was upset because he thinks this maze can be navigated entirely by talking to someone and just working harder. He’s also upset that it’s moving so slow for me, not in selfish way like I said but still hurts to hear. The progress I made over the past however many months it’s been with this condition (the PFS part) has been massive (but you can’t really see that fro the outside or just by talking with me entirely) but now I have other elements too and I need to rebuild my life again from the ground up. This is probably going to take months before I’m even able to start being a lot more social and active again. I have so much on my plate and life will not stop piling on more with work and the other usual things life throws down the pipe for us to deal with. The pressure is enormous and I currently need a lot more alone time in between therapy to deal with it and get my life back on track more.

How do you people deal with situations like this with the family that do know about what you’re going through on the surface but can’t really wrap their head around it all leading sometimes accidentally harmful misconceptions about it? You can explain all day but in the end it’s like to talking to a wall with a motivational poster on it unfortunately when it comes to this. You’re doing all you can but it never feels like it’s enough.

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#2

I provided my family with what I think was the best information available on the subject within a few months of my crash. Writeups that explain it better than I ever could have. They’re free to read up and ask me anything they want based on that or they can look into it via traditional sources and gaslight me which is the path I think they decided to take. No judgment on them, I’d probably have done the same in their shoes.

In the meantime if they ask how I’m doing I tell them in the simplest terms that I think they can understand which is to say ‘tired’. If they ask why I say I don’t know. If they get frustrated then they can stop asking and read the material I sent them. I don’t complain to them or initiate these conversations.

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#3

That’s a good idea, I should actually have some things in writing for them especially since speech impairment is a big issue with me at times. One side I actually don’t even interact with much besides seeing on major holidays because it can get bad with the gas lighting with them if I bring up anything I’m up to at the time. My answer to everything with that side is just “alright” and other simple answers on what’s going on, and I do everything to make sure I’m in the most normal state of health I can be every time I go over. They’re the kind of people that if another person is going through a health crisis they will get mad at the person having it. I’ll never forget the time I had to help my grandmother with one other person to the hospital who was having an emergency one time and one of them didn’t even call for help and just screamed/mocked them on the phone. Then they had the nerve after to get mad at them for having a problem with one of their meds they were switched to that caused it because they thought they were being too dramatic. Now that’s what I call evil. If my arm was falling off I’d try in some way to hide it from them.

The other side I am more open with, I just say it like it is but in the lightest way I can. I hate complaining myself or being like this which only fuels my isolation often. I need to start regularly going for walks again but where this isn’t too many people to run into and get myself used to that again. I think once I get a bunch of baseline routines back I’ll feel a lot more stable but right now all I got is the breakfast, coffee and music time, and consistently enough keeping up on house work one’s up again. Last thing I want to do is be a burden to any of them, sometimes I hate even asking for a ride on a worse day but I appreciate them doing what they do for me without judgement.

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#4

For me it was mostly OK I had pfs for 17 years without ever making the connection. I knew something was seriously wrong with all of these developing health issues but managed to push through because Drs could never find anything wrong I just shouldered it mostly keeping the stuff to myself. I would confide in one of my sisters who was very supportive and worried As things became worse it became more difficult and then finally I found out about pfs. I told everyone, met with mixed reactions. Because its not medically recognised and because the symptom list is so unreal an increasing number of people started to question and gaslight me, it became more humiliating. Despite furnishing them with literature evidence their mind was made up from the get go. Even now I’m so obviously very ill yet they still question validity and put a lot of it down to me and things like my diet challenging the food/allergic reactions and see what I say as impossible. Some closed the door on me a few years ago, including close friends and relatives while the rest have since disappeared over time. The excuses have been very demeaning always making me feel at fault like I’m a weak person wtf Now I’m left with a begging bowl picking up available scraps and still having everything I say diluted down. Despite being highly functioning and a joker pre severe state people would seek me out for advice and help and I’d always enter their world to see it from their perspective, never challenging and would meet their needs where i could. To see none of this from people around me has been a real leveler and has added another layer to the suffering. I know If by some miracle I recovered everyone of them would be as before. they’d rush to have me back in their lives. I miss me more than any of them possibly could.

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#5

“I miss me more than any of them possibly could.”

Boy do I feel this last one! Hoping for a miracle at some point for you! Things like this do have a way of showing you who your real friends are too, I didn’t have a big circle even before this but lost some connections anyways because they got sick of me being sick all the time. I realized what was going on around the third month when I seriously looked into this and PSSD. I definitely worked on my gut but it’s just not the cause of this, Even before this when my gut was worse my nervous system was also completely out of whack for sure. if it was alone we would see a lot more people complaining about numb genitals and getting anhedonia from eating too my cheese burgers but there is no post cheese burger syndrome so I think we can rule that out. I have after this happened had foods that made it worse though. I’ve definitely through this have some radically different perspectives on life and ways I go about things. It’s amazing how if just one crucial process in the body is thrown off then the entire thing just comes crashing down like a Jenga tower. Everyone likes to think they’re so strong but in the end we’re all fragile.

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