Medical Returning Member With Things to Say

[GemstoneParadise]

Once some years ago I joined this website, hoping to find support and understanding. At the time I was undiagnosed, trying to go it independent with my healing thinking I could rely on the understanding and support of others while I figured out the details myself. That had worked for me for a long time, but at one point shit really hit the fan for me. I am diagnosed now, but I never forgot that experience.

My PTSD comes primarily from my experience with having brain surgery and the amnesia it resulted in. I'd spent years dealing with the damage the amnesia had caused, only to not realize how badly I needed to deal with the fear of brain surgery that had developed from that experience. When I say "shit hit the fan", I'm referring to a specific point where my bottling up a lot more than I'd realized and adding more stress onto my life by trying to go to college caused me to start having seizures. Having seizures again had been my worst fear - the entire reason I'd needed brain surgery in the first place had been because I'd spent the first half of my life steadily dying to a brain tumor that had been causing me seizures. Especially because the brain surgery had taken away my memories and with it my entire sense of self, I was actually more afraid of going through brain surgery again than I was of dying which meant that I'd held within myself for so long, the knowledge that if my seizures ever returned, if I was going to die slowly again, I was going to have to kill myself to prevent that slow death because there was no way I was going through surgery again.

So naturally, when I started having seizures again I was extremely terrified. The only hope I was able to hold on to at the time was the possibility that my new seizures could be different, that they could be caused by stress, not the return of my brain tumor. I was still freaking out though, that thought only gave me so much comfort and I needed support.

I came here, thinking that if anyone could understand what I was going through it'd be other people with PTSD. What I got instead were comments telling me that I needed to stop kidding myself, that it was probably the brain tumor returning. Basically, in that circumstance, comments telling me to kill myself. From this very community.

Many more years have passed since then but to be honest, I never got over that. It's probable that I shouldn't even be here anymore, how dare I even give this place another thought. But the truth is that I'm back here because it still bothers me so much. That experience and similar comments from other communities and people I thought I could trust at the time ruined my ability to trust other people. I've not let myself feel it much until these past few days, where those feelings of distrust have overwhelmed me so much I can barely even sleep.

I feel betrayed. A part of me really believes now that it doesn't matter how nice people pretend to be on the surface, that most of them will run off and vanish as soon as I actually need them. I hate feeling this way, it's not in my nature and I'm looking for a way to change that. I guess I'm here hoping for some kind of closure. I don't know if I can even find it here, and I still think this is probably a terrible idea, but I can't well do nothing if I want to get past this.

 

[joeylittle]

Hi @GemstoneParadise - I've moved your thread out of the Introductions area and into medical trauma, for a better fit.

What I got instead were comments telling me that I needed to stop kidding myself, that it was probably the brain tumor returning. Basically, in that circumstance, comments telling me to kill myself...the truth is that I'm back here because it still bothers me so much. That experience and similar comments from other communities and people I thought I could trust at the time ruined my ability to trust other people.

I've read back over your older posts from previous accounts.

First, I want to say - I'm sorry you're struggling with this. Things that hang over our lives from things that happened in the past are often so hard to deal with. In some ways, that's the very essence of PTSD.

What's important to remember: People living with mental health problems nearly always share a few kinds of symptoms, regardless of their respective diagnoses. One of the most common is called Cognitive Distortion.

The comments that you read, way back at the time of your first posting, where you hear people telling you to give up - it's very possible that your heightened (upset, triggered) state at the time of posting influenced how you were reading what people wrote. You may have experienced cognitive distortion. Or, those people posting could have been going through whatever their own upset was at the time, and they could have been responding like assholes. Or, something in-between...

I'm bringing this up because you mention "similar comments from other communities and people I thought I could trust at the time" - which tells me it's possible you were distorting what you were being told. Or, more people were being assholes. Or, something in-between...

My point is - there's very little we (humans) can control, in life. We certainly can't control what other people say and do. We can control/learn to control (manage, regulate, whatever word one wants to use for it) our own responses and actions.

This site is full of struggling people, and they have good days and bad days. Some people aren't able or willing to work on their own reactivity, and eventually we can figure that out and take them off the site. But more often, people just are in different places, have differing communication skills, are from different countries....it goes on and on. We don't require that support be 'nice', and that's not always everyone's cup of tea, either.

All you can take responsibility for is your own thoughts, feelings, and reactions. It usually takes some time to work through those, especially when they are highly emotional. I hope coming back here lets you use this space to get some distance on the things that happened in the past, and maybe find a way to understand that you can always have the option to trust or rely on another person.

You may have encountered a real string of individuals (here or elsewhere) that aren't the sort you want to trust or connect with, but that doesn't mean that connection itself is an impossible thing - it can be learned, and part of that involves climbing inside your own head and seeing how it's working, in that moment.

Anyway - this isn't some "please, stay on the site" message...stay or go, it's your choice, and you're welcome either way.

 

[EveHarrington]

Were you “luminous lotus” the last time you were here? That’s the only one I can figure out who could possibly be you.....also meaning this is your third account, and second time coming back to vent with a new account. I oftentimes try to read people’s backstories in order to understand more. (I figured searching “brain surgery seizures” would find your past posts, and there were only a handful of posts with those search terms anyway. Yes it’s 6am and I’m up early and bored.) I’m concerned that you’re so hooked on what people have said that you’ve made two new accounts in order to try and resolve the issue......but also that you were were self diagnosing and then claiming to have overcome PTSD which in addition to saying you hated this website, was part of the issue? We are very much a site that doesn’t support self diagnosis as it doesn’t help anyone, especially the person suffering. I hope that you can find a way to let go, as there will always be people online who say things that you don’t like. I am concerned that not receiving validation for a self diagnosis (at the time) has caused you to not be able to trust. I didn’t see anywhere in those posts where anyone said that you should go kill yourself (or anything close). I think it would be a good idea to work through this issue with your therapist, AND show her all of the posts so that she can help work through the cognitive distortions. I think you’ve internalized things that weren’t actually said.

 

[Neverthesame]

I don't recall your story, so you're likely from before my time here.

I'm just not understanding what you are hoping to achieve here?
Honestly it is a little disconcerting that you keep returning to a place that you feel is harmful to you.
Once, I could understand. You said what you felt you needed too, unfortunately got another negative reaction, left again, discovered you and the community have irreconcilable differences, lesson learned.

But you're back again? Why?
What are you looking for?

Imagine doing this at a restaurant.
What will the goal be? To tell a new batch of kitchen staff and customers you don't like the food? What will that accomplish?
Do you think nobody is aware of this but you? Does everyone have to feel the same about their interactions with other people as you?

Do you feel as though people here have continued to discuss you and dissect your interactions long after you've left, feeling you need to "set the record straight"?
I've been here for years, this is the first I've heard of you, and only because you've put yourself here again.
Overall, I don't have an opinion of you. I don't know you.
You don't like the forum? That's fine. You're allowed to not like things.

There's lots of things in life I don't like, that's ok. I'm allowed to not like things. So are you. That doesn't make either of us wrong, just different.

What I don't understand is deliberately and repeatedly putting yourself into something you know you don't like. What are you hoping to get out of this?

 

[GemstoneParadise]

Oh, jeezus, I did not realize I'd be so easy to find. I was hoping things would go into archive after so long and people would have easy access to the old stuff. That second account I'd made isn't exactly something I'm proud of. And this time isn't just to vent. I want to make a change.

And yes, at one point I thought I'd gotten over PTSD. I was wrong, I admit that. The only thing I'd gotten over was the effect amnesia had had on me, at the time I still had the belief that my few of my seizures returning was just something that would have to go away on its own with time.

I'd like to point out that you're bringing up all of the reasons I'd made a new account. All of the things I'd hoped would just be buried. If I was comfortable with my history here I'd have stuck to my first account. As for why all of this is still bothering me after this long, it's because I never took the time to properly process any of it. Quite frankly I was terrified to - it turned out I was right about my seizures being caused by stress but it didn't stop them from, well, terrifying me. I haven't been able to live my life because any amount of stress and I start freaking out that I'm going to have a seizure, I've been doing my best to learn better coping skills and to actually acknowledge and properly deal with my emotions and it's meant that a lot of stuff I'd hoped I'd moved past is coming up again.

I realize this community hates self-diagnosis, but I do still think it seems a little strange to be more concerned with a label than with the actual experiences a person is having. Diagnosis or not I'd hoped people in a PTSD support community would have understood what it felt like to experience fear that was completely consuming you. I did turn out to be right that my seizures were a new kind caused by stress, but at the time I was just trying to battle that voice inside my head (not literal) that just kept telling me over and over again that I needed to kill myself before the seizures could kill me slowly again. I didn't trust myself, I didn't feel like I could trust myself, to be honest more than validation at the time I was just looking for comfort. I understand if I didn't communicate that well. What I remember getting was more specifically "Don't kid yourself." No, no one straight up told me to kill myself which is why I'd said "essentially", because to me at the time the options were that either the seizures are caused by stress or I'm dead. End of story. I wasn't exactly eager to think it could be the second option, but everyone else had seemed eager for me to think so.

I don't recall your story, so you're likely from before my time here.

I'm just not understanding what you are hoping to achieve here?
Honestly it is a little disconcerting that you keep returning to a place that you feel is harmful to you.
Once, I could understand. You said what you felt you needed too, unfortunately got another negative reaction, left again, discovered you and the community have irreconcilable differences, lesson learned.

But you're back again? Why?
What are you looking for?

Imagine doing this at a restaurant.
What will the goal be? To tell a new batch of kitchen staff and customers you don't like the food? What will that accomplish?
Do you think nobody is aware of this but you? Does everyone have to feel the same about their interactions with other people as you?

Do you feel as though people here have continued to discuss you and dissect your interactions long after you've left, feeling you need to "set the record straight"?
I've been here for years, this is the first I've heard of you, and only because you've put yourself here again.
Overall, I don't have an opinion of you. I don't know you.
You don't like the forum? That's fine. You're allowed to not like things.

There's lots of things in life I don't like, that's ok. I'm allowed to not like things. So are you. That doesn't make either of us wrong, just different.

What I don't understand is deliberately and repeatedly putting yourself into something you know you don't like. What are you hoping to get out of this?

I guess I'm here again to prove to myself that the people here really aren't as terrible as my memory wants to make them out to be. No one here needs to be my friend, or fix me, or any of that, I know full well that isn't happening, and frankly I signed up for this place again on a bit of a whim and frankly kept telling myself it was probably a stupid idea the whole time, but I can't stand holding onto these feelings I've ended up with and wasn't really sure what else to do about them. I'm here because I decided that trying to do something was better than doing nothing, even if I'm not sure if that something is right. I might find out that I was right and this was a horrible idea, or I could be completely mistaken and maybe I'll find that people here really are a lot more reasonable than I give credit for which quite frankly is probably the case. I know the state I was in before. I know I wasn't seeing things the way I would under more normal circumstances. I'm just trying to find some way to help myself process so I can finally move on.

No, I really didn't expect anyone to be continuing to talk about me after all this time. People have their own lives, their own problems, I probably pissed some people off a time or two regrettably and maybe if I'm unlucky they remember that, but outside of that I probably barely even made a blip on the radar.

I guess I really should make that more clear though: I'm not here to prove to myself that everyone is nice and understanding and cares a lot or whatever, that was an unrealistic belief I'd had once before because of the naivety that came with amnesia. The experiences I'd had when I started having seizures again were a shock and a wake-up call that happened to be quite a bit too shocking, and I've gone from one extreme to the other. I'm just trying to get this to balance out.

 

[scout86]

Now we're getting somewhere, I think. Your last post was, at least in my opinion, the best so far. You sounded a little like you were trying to pick a fight earlier. At least to me.

For the record, I don't remember your story and wouldn't have attached anything to it if you'd just started over.

I realize this community hates self-dia

I'm not sure that's accurate. My guess is the majority of members think it's a bad idea. I have to admit, I've seen some conversations go sideways because people can get hung up on labels. (I don't really get that, but it seems to happen.) Anyway, now you have an official diagnosis. Welcome back. I hope this time the experience is more useful!

 

[grit]

Welcome back and welcome! Have no idea about your past and it does nt matter. You sound interesting and intelligent enough to me. Hope you share your story. This a public site so you just have to learn how to not respond those who may display aggression all part of the beast of ptsd.
Take care you have a lot on your plate.

 

[Sideways]

A lot of people come here to engage with others. You might find that dropping in on the threads in the Social forum a great place to start:)

 

[joeylittle]

I was hoping things would go into archive after so long and people would have easy access to the old stuff.

Yeah...no, sorry. Members who are curious might search, sure. And I'm the admin, so it's my job to access 'the old stuff'

I'd like to point out that you're bringing up all of the reasons I'd made a new account. All of the things I'd hoped would just be buried. If I was comfortable with my history here I'd have stuck to my first account.

And if we allowed multiple accounts, that would have been no problem. Since it's against our rules, I had to determine whether it was necessary to merge your old account into this one, or just let it lie. I decided to let the old one be the old one.

Lots of people want to bury things from the past. If it helps at all - remember, everyone worries most about themselves, ultimately. That's not a bad thing, it's just the way things work. I don't think you've got anything to fear from past posts.

And this time isn't just to vent. I want to make a change.

That's fantastic. Really, you can use this site however it's helpful for you. The best way to understand what we mean by "community" is, a large group of people with things in common, working on ourselves in front of each other. We do that because we believe there's therapeutic value in putting the stuff out there and letting others with similar experiences see yours. It's good for them, it's good for you, it helps. That's the point.

And, like sideways said - also, distractions are nice. Social is great for non-mental health focused places to hang out, which we all need as well. Anyway, welcome, again.

 

[TruthSeeker]

Oh, jeezus, I did not realize I'd be so easy to find. I was hoping things would go into archive after so long and people would have easy access to the old stuff. That second account I'd made isn't exactly something I'm proud of. And this time isn't just to vent. I want to make a change.

And yes, at one point I thought I'd gotten over PTSD. I was wrong, I admit that. The only thing I'd gotten over was the effect amnesia had had on me, at the time I still had the belief that my few of my seizures returning was just something that would have to go away on its own with time.

I'd like to point out that you're bringing up all of the reasons I'd made a new account. All of the things I'd hoped would just be buried. If I was comfortable with my history here I'd have stuck to my first account. As for why all of this is still bothering me after this long, it's because I never took the time to properly process any of it. Quite frankly I was terrified to - it turned out I was right about my seizures being caused by stress but it didn't stop them from, well, terrifying me. I haven't been able to live my life because any amount of stress and I start freaking out that I'm going to have a seizure, I've been doing my best to learn better coping skills and to actually acknowledge and properly deal with my emotions and it's meant that a lot of stuff I'd hoped I'd moved past is coming up again.

I realize this community hates self-diagnosis, but I do still think it seems a little strange to be more concerned with a label than with the actual experiences a person is having. Diagnosis or not I'd hoped people in a PTSD support community would have understood what it felt like to experience fear that was completely consuming you. I did turn out to be right that my seizures were a new kind caused by stress, but at the time I was just trying to battle that voice inside my head (not literal) that just kept telling me over and over again that I needed to kill myself before the seizures could kill me slowly again. I didn't trust myself, I didn't feel like I could trust myself, to be honest more than validation at the time I was just looking for comfort. I understand if I didn't communicate that well. What I remember getting was more specifically "Don't kid yourself." No, no one straight up told me to kill myself which is why I'd said "essentially", because to me at the time the options were that either the seizures are caused by stress or I'm dead. End of story. I wasn't exactly eager to think it could be the second option, but everyone else had seemed eager for me to think so.




I guess I'm here again to prove to myself that the people here really aren't as terrible as my memory wants to make them out to be. No one here needs to be my friend, or fix me, or any of that, I know full well that isn't happening, and frankly I signed up for this place again on a bit of a whim and frankly kept telling myself it was probably a stupid idea the whole time, but I can't stand holding onto these feelings I've ended up with and wasn't really sure what else to do about them. I'm here because I decided that trying to do something was better than doing nothing, even if I'm not sure if that something is right. I might find out that I was right and this was a horrible idea, or I could be completely mistaken and maybe I'll find that people here really are a lot more reasonable than I give credit for which quite frankly is probably the case. I know the state I was in before. I know I wasn't seeing things the way I would under more normal circumstances. I'm just trying to find some way to help myself process so I can finally move on.

No, I really didn't expect anyone to be continuing to talk about me after all this time. People have their own lives, their own problems, I probably pissed some people off a time or two regrettably and maybe if I'm unlucky they remember that, but outside of that I probably barely even made a blip on the radar.

I guess I really should make that more clear though: I'm not here to prove to myself that everyone is nice and understanding and cares a lot or whatever, that was an unrealistic belief I'd had once before because of the naivety that came with amnesia. The experiences I'd had when I started having seizures again were a shock and a wake-up call that happened to be quite a bit too shocking, and I've gone from one extreme to the other. I'm just trying to get this to balance out.

@GemstoneParadise I too have had a prior account. At the time I left this site, I was being actively hurt and I just needed to find someone who understood. I had trouble connecting and I really needed a place to fit in- I had no one. Couldn’t deal with what I interpreted as negative responses from some folks at the time and I was being stalked in real life so I was super no trusting and lost.

I stepped back, left because My phone was hacked and a few people disagreed with me boldly. I came back w a different account, returned w a different perspective- still here for the same reason- to connect w others w similar situation, get ideas to progress, find understanding. The second time, when I did, it was with “take what I like or can use - and leave the rest”- and “consider the source-realizing everyone has good/bad days which can be reflected in their posts- and by then I had begun to understand my own cognitive distortions.

I think changing usernames can give us an opportunity to start over. I’m Glad I did GLAD YOU DID! There is value in anonymity.

 

[DharmaGirl]

Welcome! I'm glad you decided to make a new start and I look forward to getting to know you!

 

[frogthroat]

I'm not trying to be rude. I have no idea who you are but this is an internet forum and the internet is the wild west. There are people on here I can't stand so I blocked them. Thankfully, it's been a relative few. Most people I've encountered here generally mean well and if I don't understand what they're implying I'll post back and ask just to make sure I'm not taking it wrong. I've also had some inconsiderate comments fly my way when I was in a bad state mentally. I don't judge this whole community based on those few people.
In that vein, I don't comment on trauma I know nothing about like military or in your case - medical trauma. I have no idea how to approach that and I feel it's not my place to assume.
This forum is a mixed bag. There's lots of of different people with various traumas. Have you specifically looked for a forum for people dealing with medical trauma? I think that would be a great option for you if you don't feel safe or understood here.