31 replies to this topic

[Wonderful.Cheese]

Lack of validation is one of my fears also.

Same here. OP, do you feel this way too? I get a sense that you do. Not having a diagnosis can feel like you are not being validated in having an MI at all. I can so relate to that feeling.

[kitkatt91]

Lack of validation is one of my fears also.

Same here. OP, do you feel this way too? I get a sense that you do. Not having a diagnosis can feel like you are not being validated in having an MI at all. I can so relate to that feeling.

 

Very much so, although I know fear of being invalidated is mostly a problem i have between myself and my family. My family is always asking why I don't work or go out or have friends and i don't know why or what to tell them. Even little things like why I don't pick up the phone...I tend to come off as rude and aloof when its not really the case, its not my intention. I seem to have no real grasp of social cues either, maybe its just a personality thing, but its hard to be around people because I know they'll think I am rude and I don't know how to explain it to them.

 

My parents are even more of a challenge because they have their own issues. They don't want to think that they might have messed up at parenting and they don't want to have a magnifying glass over themselves and their own psyche; there are so many similarities between my parents and I, so whatever is "wrong" with me they are afraid might be "wrong" with them. Its been an insecurity of theirs for so long that they've opted to stay in denial instead. They didn't "believe" I had an eating disorder until I went into organ failure, and they seem to have trouble "believing" that anything out of my control is happening now. They are worried for the first time because they see I've become kinda incapacitated, but they cling to the idea that I just have to start meditating or watching my breath or "releasing energy". My dad tells me to study Buddhism, or practice kundalini, things that helped my parents but that I don't want to follow because they aren't sane themselves! I don't trust their suggestions because I feel like its a part of the same problem. My mom is not mentally healthy and neither is my dad, which makes them minimize or become competitive, too.

 

For example, hallucinations. My parents never bat an eye at my hallucinations because they had them too. They're into that whole New Age thing so they try to tell me that psychosis is enlightenment and I don't want to believe that because enlightenment shouldn't be so scary. if they're not trying to lecture on their metaphysical idea of psychology, then they are getting too caught up on their own traumas to think that anyone else has any. Certain people in my family tend to feel like they have been through such harrowing lives that no one else's experience can be as valid or real. When my parents thought I had bipolar...they left me alone. They didn't prod or poke or harass me. They didn't put me down. They didn't tell me that my chakras are clogged up and to start chanting. Now they're back to getting in my face about it though and giving their opinion on magical cures for me. They didn't want to send me to witch doctors for bipolar but now they do again. I know that they have good intentions, but for some reason it just feels really invalidating to hear that people know what will cure me and that it all depends on me meditating or breathing or finding religion. Things that sound so...obvious. If the cure is that obvious, then why can't I manage it?

 

I feel like something just snuck up in the night and ruined me. Something has ruined my life and I've been fighting it for so long. If I were to believe that all I had to do was breath, then what is wrong with me? I don't know why but if that was all I had to do and I have wasted so much of life on something as simple as misdirected energy, I would feel terrible. I do feel terrible. This has all has been so hard and so terrifying, if all I had to do was find my spiritual path, I would feel like shit. Total useless stupid shit. Why didn't I think of that ten years ago if it was so easy? It also plays on this long-standing paranoia/doubt of mine that I have been brainwashed to be sick. I am making all of this up.

 

Does anyone else get this fear? I think its from growing up and being told that I was making things up or that I was lazy or had "no right" to be problematic because my life wasn't that bad. Now, as an adult, I worry that those things are correct. What if I made myself sick and now I don't even know it? Some days I think to myself, "this is stupid, why do I do this? there is no reason, I can wake up tomorrow and decide not to be this way anymore. it will all go away one day". It doesn't go away, and I start to feel crazy, because I want to snap myself out of it but I can't. I always go back and forth between feeling helpless and not in control/not in my own head, but then another day I will think with full confidence that nothing is wrong and I am just making everything up. Even after I speak sometimes I will be so alienated from what I am describing that I worry that I am lying as I go. Its really confusing, and when I am stuck thinking that I have made myself sick, I just beat myself up for it. I never know what to think. I feel like if I were to wake up one day and hear that all of this was fake or that I had brainwashed myself sick, I would believe it, but I would have to die. I would have to die because it would be too painful to know I wasted my entire life on...nothing.

 

Because I have felt this way for so long, I take it more personally I guess. I don't want to think that I ruined my life and wasted my youth because I forgot to breath or didn't pick up religion, or worse yet because I got carried away in a lie. I guess I just need black and white and a boxx and a diagnosis to act as an anchor to stabilize my idea of...well...my head...so I can stop going back and forth between thinking I'm crazy or that I'm crazy and have made everything up and the last years have all been a lie. When I go downhill that thought gets louder and I get very scared because I can't tell if I am lying and have fooled myself and everyone around me. I even still wonder if I made my eating disorder up. I don't know if I did. I could have, I suppose. People don't know it of course, but when they start to speculate about what is wrong or what I need, that fear gets revved back up and I get scared that I have made everything up. People always have an idea about what is "going on", always a new one. I can never have certainty because someone always has another idea about what the problem is. It puts me in a rut and it hurts and I can't reconcile it and I spend so long trying to figure out if this is fake or not that I eventually just snap and get sad and want to hurt myself and punish myself and retreat into my head more. Its like a conundrum. An equation that I can't solve so it just repeats in my head and fail over and over and over again until I just short-circuit and crash. Is it real? Is it in my head? I don't know. Eh...I'm rambling again now. I guess I really do have more issues with validation than I thought. Its a way to get people off of my back and a way to prove to myself that I'm not crazy, even though that very logic is a contradiction of itself. 

[kitkatt91]

^{Oh god haha sometimes I really don't realize how much I write. Sorry about that}

[Parapluie]

Does anyone else get this fear? I think its from growing up and being told that I was making things up or that I was lazy or had "no right" to be problematic because my life wasn't that bad. Now, as an adult, I worry that those things are correct. What if I made myself sick and now I don't even know it? Some days I think to myself, "this is stupid, why do I do this? there is no reason, I can wake up tomorrow and decide not to be this way anymore. it will all go away one day". It doesn't go away, and I start to feel crazy, because I want to snap myself out of it but I can't. I always go back and forth between feeling helpless and not in control/not in my own head, but then another day I will think with full confidence that nothing is wrong and I am just making everything up. Even after I speak sometimes I will be so alienated from what I am describing that I worry that I am lying as I go. Its really confusing, and when I am stuck thinking that I have made myself sick, I just beat myself up for it. I never know what to think. I feel like if I were to wake up one day and hear that all of this was fake or that I had brainwashed myself sick, I would believe it, but I would have to die. I would have to die because it would be too painful to know I wasted my entire life on...nothing.

 

I know exactly how you feel. Especially when I was depressed, I would tell myself "Stop it, right now." I would go over and over in my head all the reasons why I'm just a huge faker and none of this is real. I even question my psychosis sometimes. Do I just want attention? I told myself I was a fraud for being depressed and that if I just tried hard enough, I'd feel better. It never happened, lo and behold. I worry that I'm lying too, I feel so alienated from what I'm saying. I feel like I'm describing someone else's psychosis. 

 

This was kind of rambly, sorry. I just want you to know that I completely understand.

[kitkatt91]

Oh that' a relief--I didn't know if i would be alone in that feeling. I always see the fact that I even have this thought a proof of its validity. If I weren't making everything up then I wouldn't have thee thought, why ele would I doubt them? Its like those moment of paranoia are actually moments of clarity. I was talking to my pdoc about everything and while I was talking I just suddenly heard myself speaking as if I was outside of my own head, and I became self conscious and doubtful. I didn't know what I was talking about and the thought emerged that I should just shut up and stop it because maybe I'm lying because I don't feel like what I'm saying is true anymore. When I left his office (I with my boyfriend) he told me that I was really inaccurate. I minimized everything and left out not just details but whole events. he said that when I talk to people, I tend to give the impression of being far more functional than I am, but in my own head I felt like a raving lunatic an that what I was saying was so outlandish it had to be a lie. It only feels real in the moment, when its gone or if I happen to wake up and feel clearer-headed I start to doubt the veracity of what I thought I was experiencing. so when I talk to a doctor and am anxious I will doubt myself and start to seriously curtail my symptoms around them. Its certainly not the best thing for ego to constantly think I am a liar. I really stop helping myself when that thought settles in or I stop taking my medication. I really do feel that I have manipulated my own doctors into thinking I am something I am not and thus my medication is not really needed, it was prescribed for something that I made them believe. But then sometimes I sit back an look at that whole thought process and sometimes think that is just as freaking crazy!

[puddle of fire]

hi kittkatt. I think my doc was keeping my dx from me while she was consulting with other docs.

 

I agree that not knowing your dx is annoying. I was also bipolar with psychotic features at one time.

 

I hope your dx gets cleared up like mine has. I feel a comfort in having a label.

 

dx: schizotypal personality disorder, ptsd, GAD

meds: risperdal 3mg, klonopin 1-2mg

[WinglessFaery]

Kitkat youve described pretty perfectly why an actual diagnosis is important too me and I think alot of people. Your parents sound alot like my dad except hes a fundamentilist christian so I just need more faith in god.

I just switched pyschiatrist who is still getting too know me and it is the cause of so much anxiety. I dont want my diagnosis taken away from me its a really scary thought so I really feel for you having too go through that.

Im kinda the same way with doctors. I have a horrible fear that my symptoms will be minimized by them so I minimze them myself. It makes no sense.

I get very anxious about talking about past delusions with him because I feel like hes not gonna care cause its over now..but I dont tell him at the time cause well..I dont think there delusions..


Ill stop now so I dont steal your thread lol

Edited by WinglessFaery, 05 February 2013 - 11:12 PM.

[kitkatt91]

hehe I don't mind at all if you hijack the thread Steal away! Its really nice hearing from other people, I don't have many friends and I don't know anyone else with MI issues so its nice to not feel so isolated. Good lick with the new pdoc, just try to be honest and open so they can help you!

 

I'm finally switching to a new pdoc myself and I'm getting nervous about it. I'm making a list of all of my symptoms so I can give that to them that way I can't frget o leae anything out. I need to get on some kind of public assistance because I've been homeless for the last few years, so knowing a dx is even more important. I think it will calm my nerves too, because right now I am just spinning in circles about this. I literally can't stop thinking about it, trying to dissect what my doctor said, and trying to figure out why I am on my medication blah blah blah. 

 

I am really scared that my pdoc might think I am in the early stages of some kind of psychotic disorder and just wasn't telling me. I started having psychotic episodes and really strong emotional outbursts that he was tracking for about a year until he decided it was time to be an an AAP long-term (as opposed to prn sublingual tablets). I'm scared about what that means. I'm still really weirded out about the idea that I have been psychotic. I don't really know when I am psychotic, if I still am, when I was, etc. Its all very new to me, I am still figuring out what that even means. A lot of the time I think I am totally fine and I just want to stop taking the meds. I don't know how people even diagnose that stuff, no one told me I had a psychotic experience until i was in the hospital when they mistakenly told me I was bipolar, too. Before that I was told that I had PTSD and that was where all of my symptoms were coming from. Now I'm just confused; if its not bipolar and not PTSD, then what is going on? I'm either losing my mind or making it up! That's the only conclusion I can come to right now. Hopefully a new doctor can clear it up because I am starting to feel like my obsessing over it is going to drive me crazy. I literally cannot stop thinking about or get it out of my head or focus on anything other than what I think my doctor is hiding from me!

[Parapluie]

I have been where you are, obsessing over what my diagnosis was. It's hell. I have obsessive ruminations as part of my GAD, so I tend to fixate on something (like a diagnosis) and go over and over and over it in my head. It's exhausting. I'm sorry you're having such a rough time with this. To calm yourself down, try to remember that treating the symptoms is more important than the diagnosis. But as we've all discussed in this thread, diagnosis can be very important some people, myself included. I mean, wouldn't you want a diagnosis for a physical illness too? I think it's the same concept and feelings. 

 

Anyway.

 

I was recently told by my pdoc that I'll be on anti-psychotics for the rest of my life. That was a huge blow to hear. I'm only 22, the rest of my life is a long time! So, I understand your hesitancy to accept being on AAP's long term. It's hard to swallow. But, I'm learning to accept the fact that I have a psychotic illness and it needs to be treated, just like any other illness. There is no shame in having a psychotic illness.  

 

I also was jarred to realize that I was psychotic. I was talking to my tdoc about my symptoms and suddenly she became very serious and asked me questions like "Do you ever smell things other people don't smell?" and "Do you ever mistake sounds for voices?" I was dismayed to learn that other people don't have these experiences. I knew something funny was up, because I was living in fear of the sun and my thoughts felt like they were leaking out of the top of my head. I knew that was weird. But I didn't think I was psychotic. My tdoc referred me to my pdoc, who told me I was psychotic. That devastated me, honestly. 

 

The word "psychotic" has so much stigma attached to it. I hear that you're worried you might have a psychotic disorder. Maybe that worry is rooted in stigma? People associate the word "psychotic" with "psycho" and batshit crazy murderers. Many people don't even know what it truly means. All it means to have a psychotic disorder is that you experience reality differently than other people and you will probably need to take AP's long term. 

 

I often don't know when I'm psychotic either, until I start having delusions. But you don't sound psychotic right now, you sound perfectly normal. In regards to your psychotic episodes... Hate to break it to you, but you're losing your marbles. But hey, so are the rest of us. You're not making it up. Why would you put yourself through that?

 

No matter what your diagnosis turns out to be, you'll still be you. Psychotic disorders can be tough to manage, but it's doable. I know you want to be a normal adult, and with the right treatment, you will be. I have a psychotic disorder and one of the most normal people you'd ever meet. So try not to worry too much. You're still you, just a little crazier. 

Edited by Parapluie, 06 February 2013 - 09:27 PM.

[enlightened_plutonian]

I hope you get answers from your new pdoc.

 

I agree with Parapluie. It sucks to have a psychotic disorder, and I don't think that this is something anyone would want to make up. I was accused of making up my experiences for a long time which is one of the reasons it took so long to get help. But I am mostly doing a lot better since getting on the right meds. The stigma certainly sucks, and most of it comes from ignorance. You are still you, whatever your diagnosis.

[scatty]

You have been presenting well.  I've been told I do that too, and I'm thinking in my head "If you only fucking knew!"  It seems as if we've been told we're fine all our life, we feel like we are frauds and begin to doubt our own craziness.  Now, that is insanity!

[kitkatt91]

thank you...online i think I really do. I put a lot of effort into composing myself and I was a psych student so i try to understand and ground myself rather than be carried away. I don't talk much in person and have trouble fluently articulating myself when i speak, but I am always told by doctors that they are impressed by how smart I am and how much insight I have. I think a lot of people seem to think that being mentally unwell also means being intellectually deficient and that if you can string together a senence then you are "fine". My boyfriend calls it "theatre face" because I used to act so I sometimes involuntarily begin to "act" and in that mode is when I tend to lie and leave things out in order to support whatever role I am trying to do. Theatre Face loses steam though and I will eventually run out of lines with a person. That i when I will be quiet and hide instead. People also tend to think crazy people are always in hysterics, and that my being quiet imeans i am well. I didn't cry as a baby either, it was my stupor, but people liked that. 

 

I don't know whhhat doctors think of me (so I ruminate obsessively about what they say--being unglued or referencing people 'as bad as me or worse' etc etc... will 'get worse before better'), and people's ideas o me are always different. That's why I get confuse...I don't know who to believe. some people think i am very introverted and that it is normal. other people think i am pathetic...i have had old classmates send me hateful mail about how i'm not the same person anymore and that i'm wasted potential and i should be embarrassed, my problem is that i lapse into doing stupid things...i lose control and cry mid-sentence, i injure myself, i crawl around the floor and drop into fetal position (all i have done at work and been fired for..), bang my head into tables and walls, start fights, stop eating, become afraid of being watched or killed....but conveniently very few people have to see that. i don't go outside much anymore and when i do i am usually so scared and would be so embarassed if they thought less of me that i really do maintain y composure. if i didn't talk, no one would notice anything. i guess that is where my confusion comes from...everyone thinks something different and my doctors won't tell me WHAT they think. several have even rejected me saying that i need to go to hospital first for my behaviors before they'll see me. One dropped me and told me to be evaluated by someone else. Its usually people who see me under the pretense that i am just bulimic, then it comes out that i am no just bulimic but a tangle of things. even the hospital said this! but then a lot of people think i am very well. just as a lot of people look at me and think my face is depressed when i am not. everyone thinks differently, projects differently. so i just stay indoors and write instead. some days i believe the people who think i am fine, some days i get scared that the people who think i am crazy are right. all i know is that for whatever reason, i can' function...for whtever reason i try to hold together and bottle up but withut warning i crack and do bad things again. i don't know why. its hard when people tell you such conflicting things...being told you're demented and then being told you're just shy. It would be cnfusing for anyone i think...