Does no one else feel the way I feel?


#1

I have been editing this text a little bit at a time over the past week, just trying to make sure that my description of my thoughts and feelings is reasonably complete, accurate, and internally consistent, and that I am not making a big deal out of failing to understand something that I should be able to work out just by reviewing the information on www.schizophrenia.com and the whole internet. Those seem like reasonable things to expect of myself before posting, but I think that my main obstacle to achieving those goals is social isolation which I can combat by just posting whatever I have written. No matter whether I really am accurately reporting how I feel, hopefully your reactions will give me some perspective and help me understand myself.

My mom has had what, to me, seem like psychotic symptoms, since she was a child. She was molested as a child, so I guess that is probably why. Because of her lack of respect for psychologists and psychiatrists, it is hard to know exactly what is the deal, but my dad believes that she has Borderline Personality Disorder. When I got assessed to find out if I am at risk of developing schizophrenia, I talked about my mom and I was told it sounds like she has Borderline Personality Disorder or maybe just trauma; I got that reaction without even mentioning Borderline Personality Disorder, which suggests to me that my dad is right, but I still cannot be absolutely certain.

I grew up with my mom and my stepdad, and a court-ordered visitation schedule with my dad. So these three people had a strong influence on how I thought about my mom and mental illness as I was growing up. For the most part, the attitude imposed on me was that my mom’s psychotic symptoms—referred to not as psychotic symptoms, but as The Voices or whatever—can be safely ignored, and it is best to just not worry, meaning do not think about it.

It seems like an avoidant coping strategy on their part, which follows logically because they each grew up in a family full of mental illness and had some sort of traumatic experience therein; for example, my dad grew up with a bipolar father who committed suicide when my dad was in his early twenties. I must admit it seems totally true that my mom’s psychotic symptoms can be safely ignored; however, I grew up with my mom and she therefore has been a big part of my life, and I think it is meaningful to understand her psychotic symptoms, or whatever they are (they sure do seem like psychotic symptoms to me!), even if there is actually no problem. And I think that to really understand, I need to be educated about schizophrenia and I need to compare her condition to schizophrenia, even if schizophrenia is not exactly it.

Consider the comments on the following YouTube video (warning: I suppose some of you could find this video a bit triggering):

Well, really I was looking at the comments years ago, and now it is pretty difficult to dig up the ones I remember, but the more recent comments are somewhat similar anyway. There are people commenting that they have schizophrenia and that they can attest that the video portrays it accurately, or that they have an experience that differs from the video in some very specific way. There are people who do not have schizophrenia, who are saying that it looks fun; some of them are even going so far as to say that they would like to actually have schizophrenia, as in “I want this. It would certainly cure my boredom.” To those people, the people with schizophrenia reply that it is not fun when you are experiencing it.

Thus, I get the impression that people who do not have schizophrenia, and who have no family member with schizophrenia, and no other connection with schizophrenia, sometimes think schizophrenia would be fun and exciting, in the same way that such things as a haunted house can be fun (and people actually pay to go through a haunted house). To the question of why a haunted house (as an example), which portrays things that clearly would not be desirable if they were real, is fun, you could answer that it has something to do with being dissociated from the content. Those who have schizophrenia, or who have a close family member with schizophrenia, or any other connection with schizophrenia, would never think of schizophrenia being fun; if you accept that a haunted house is enjoyable for reasons related to being dissociated from the content, figure you cannot be dissociated from thoughts of schizophrenia if schizophrenia is really relevant to you.

Actually, I think it is more that a video is a terrible way to convey what it is like to have schizophrenia. You can see what the main character experiences physically, but what he/she thinks of it is mostly left to the viewer’s imagination. A little bit about the main character’s thoughts/feelings is conveyed by behaviors such as pushing the pizza off the table, but what some of the comments on the video demonstrate is that every viewer gets his or her own ideas about what the experience is really like. To me, the video really does make schizophrenia look like a lot of fun, but the post “I just saw it all of a sudden” by @pansdisease gives me a mental image of schizophrenia as something extremely awful (although I reckon his psychotic symptoms came from PANS disease, not schizophrenia), so it is not that I cannot understand that; it is just that the video does not do it, because it is so hard to look past how much fun it is to watch the video.

Even still, there is a difference between what is fun to experience and what is fun to imagine. As an example, the main character in Nineteen Eighty-Four is pretty unhappy, and there is no happy ending, but there are many people who are far more normal than me, who totally agree with my opinion that it is an extremely enjoyable book. In that manner, I have been indulging in a daydream about schizophrenia, with scenes that portray myself crying over the consequences of very bad things that I did while hallucinating/delusional, a scene that portrays myself having a psychotic episode in front of many of my peers and then feeling very embarrassed and worrying what they will think of me after that, a scene that portrays myself looking up information about in which states it is illegal for individuals with schizophrenia to drive (including states where I may have been thinking of working after finishing my Ph.D. in Computer Science) and information about what it takes to get involuntarily committed in various foreign countries (including countries where I may have been thinking of attending conferences), etc. A daydream is like a song: it can convey any emotion, positive or negative, and still be very enjoyable.

I would like to make an analogy from my experiences with oral surgery. I have had a tissue graft, an ankylosed tooth extraction, wisdom teeth extraction, a bone graft, an implant tooth added, and a little bit more which, in the interest of brevity, I will not spell out. Even though it is something about which most people experience no positive feelings at all, I have embraced having so many new experiences; every experience with oral surgery is unique and sensational. I always felt a rather intense pain when he inserted a needle in the roof of my mouth to numb me. That pain was part of the experience, and having enjoyed the whole experience for its uniqueness and depth, frankly, I would not prefer that the pain not have existed. I am calling attention to the pain not because it was my favorite part, but because it shows that something that is, in and of itself, undesirable, can still contribute to a pleasant sense of having a new experience. So could I choose to look at it that way if there were voices in my head saying I am stupid and immature, or distracting me when I am trying to concentrate on working toward my Ph.D. in Computer Science, or if I got involuntarily committed for being a threat to someone’s personal safety or for being unable to live independently?

One of my peers here at the university did a project related to the use of virtual reality to help people cope with pain. He spoke of a specialized definition of the word mindfulness, referring to a mental state where you are carefully observing everything and striving to notice every detail, but not judging things as good or bad. I do not know if I am explaining it very well, but it was something that he said has been proven to help people cope with pain. It reminds me of the way I approached oral surgery. Could the same principle be applied to coping with schizophrenia, like by meditating? I have not seen any posts on this forum talking about that, but somehow I am very inclined to believe that if I were having a hard time due to schizophrenia, I would mentally distance myself from it and try to appreciate how new and different it is. There are also some things that I think would be truly positive about schizophrenia; I think I would love to be a human subject in a study about schizophrenia, or to describe my experiences to someone who is curious about schizophrenia and has lots of very specific questions for me.

In recent years, there were times when I suspected that my mom has schizophrenia, and there were times when I suspected that I am at risk of developing schizophrenia, but as I had each of those two thoughts, I felt like it was dissonant with my feelings toward schizophrenia. As evidenced by the comments on the YouTube video about schizophrenia, my feelings about schizophrenia can only be experienced by those to whom schizophrenia has no relevance, meaning that I must not have grown up with a mom who has schizophrenia, and I must not be at risk of developing schizophrenia, and if I suspect either, then I am obviously very naïve and immature.

I started lurking on this forum years ago, when it was what is now accessible as “Old Archived Forums,” organized very differently from the current forum. I was focusing primarily on the forum for the offspring of individuals with schizophrenia, because that was what I wanted to believe is me or similar to me. It seemed like an attractive community which I imagined as people meeting in a big ballroom full of tall tables with small tabletops, bearing tablecloths and wine glasses with cloth napkins stuffed into them (but neatly folded). There could be someone wearing the shirt that says “You’re just jealous because the voices only talk to me”; I love that shirt.

Elsewhere on www.schizophrenia.com I found a note that if you are a high school student who just wants to interview people for a high school project about schizophrenia, you should satisfy yourself with the myriad of information available on the site, because the forum is for people who have schizophrenia, not people who have time to help a high school student with his/her homework. It is hard not to see myself as similar, in spirit, to such a high school student. The way in which I am drawn to schizophrenia seems like something from the mind of a young high school student who did not know that schizophrenia is a word, who then watched A Beautiful Mind and, lacking the emotional maturity to understand the dramatic scenes and the gravity, would say that it is very similar to The Matrix. Then he/she could wonder if he/she might have schizophrenia, not because of any strange experiences he/she had had or any other good reason, but just in the same way some people might say, “Could we really all be living in a massive computer simulation, just like in The Matrix? How can we possibly rule out the possibility?”

Now I still am inclined to feel like that, because really it seems to me that my desire to post here comes from my positive feelings with respect to schizophrenia, which are apparently very weird feelings, popular among those who have no connection with schizophrenia, but unpopular among people like you. I love to see things related to schizophrenia, such as Oprah Winfrey’s interview with the family of Jani (a child with schizophrenia, who was seven years old at the time). I have even had several experiences witnessing, firsthand, various people talking about or demonstrating psychotic symptoms they have, and I love that, too. I hope I am not creeping you out, but schizophrenia just has such a distinctive “ring” to it. It kind of stands out to me like a cute cartoon character, and gives me a good feeling inside, like this music video (warning: this is another video that I suppose some of you could find a bit triggering):

In the forum as I was looking at it years ago, there were plenty of posts expressing extreme anxiety over the possibility of inheriting schizophrenia from a parent, but I could not find a single post expressing the sentiment that even though that would not actually be good, it is exciting to think about. That is why I feel like my feelings about schizophrenia imply that I am naïve and immature. When I started to think seriously about whether I am likely to develop schizophrenia, I started taking fish oil—and I like to think back to it not honestly because it helped me stay calm, but because it brought me one step closer to blending in with that lovely ballroom full of people who have parents with schizophrenia. The fish oil is a symbol that would be recognized there, like a My Little Pony toy at a My Little Pony convention. It feels good to know that I really did think the fish oil was a smart move because I could develop schizophrenia, and that may have been a reasonable judgment on my part; I was not just using the fish oil as a toy to indulge in my…fantasy? What the HELL is wrong with me?

In my decision to post on this forum, what can I hope to achieve, other than to indulge in my incredibly weird fantasy which is reserved for those to whom schizophrenia has no meaningful relevance? It really does seem to be true that my mom’s psychotic symptoms can be safely ignored and therefore do not matter, and that I do not have schizophrenia and I never will, so why do I not just forget it and focus on working toward my Ph.D. in Computer Science and whatever else I might like to do? In the mental image of the forum as a ballroom, picture me running up to the person who is wearing the shirt that says “You’re just jealous because the voices only talk to me,” and saying, with a grin, “I like your shirt.” Is it not my only goal to entertain myself?

Even so, given who my mom is and how big a part of my life she has been, I have some suspicion that posting on this forum might actually be a legitimate behavior for me; you can let me know if you want me to go away because I am just not one of you. Could it be that my twisted view of schizophrenia has something to do with the way my dad and stepdad dealt with the whole question of what to say to a child who is growing up with a mentally ill parent? I reckon that would certainly be an appropriate topic of conversation here, if there is any truth to it. Otherwise, maybe a reply that I cannot anticipate will lead to some other appropriate topic of conversation. FYI, what I now know about myself is that I am alexithymic and I have Asperger’s Disorder.

I do not know why I cannot see things your way. I think perhaps part of what is wrong with my mental image of schizophrenia is that in reality, the hallucinations are caused by negative emotions, such as fear, being felt in the first place. You think you have a fear response to the hallucinations, but actually the cause and effect relationship is reversed. So if I like the idea of seeing blood coming out of the edges of the ceiling, then it would never happen.

On the other hand, search for the thread “Schizophrenia can be fun/interesting” in the “Old Archived Forums” and you will find several people who have schizophrenia and are expressing the sentiment that it can be enjoyable to stop and contemplate what a new and different experience it is. So maybe that really is what I would think if I developed schizophrenia. I had an unusual emotional reaction to oral surgery, so why not an equally unusual emotional reaction to schizophrenia?

I know my post raises more questions than it answers, but it is already longer than any other post I have seen on the forum. There are still some things I am tempted to add, but maybe it is better, at least for now, if I just see your reactions. If I make this post too long, then maybe no one will read it, and then when I see the lack of replies, I will wonder if that is what I get for being so weird.

P.S. @pansdisease, it occurs to me that maybe you were like me, except just with respect to psychosis, not schizophrenia. “I walked in a dream state completely happy and inwardly comfortable” sounds like me daydreaming, and “How could i have thought this was a good place? Almost twenty years i thought it was, what a delusion that is” sounds like my uncanny positive feelings associated with thoughts of schizophrenia (or just psychosis). Do I have it right, @pansdisease? I do realize that you might not read my post; if I do not hear from you, maybe I will post in your thread. I like your shirt :wink:


#2

it sounds almost like you are romanticisizing the illness - which is pretty common (well not a huge pop of people do this) but there are people who romanticize various illnesses. Not out of maliciousness, but because the idea of the illness and everything that goes with it fills a void in them…

Are you seeing a therapist, this is something that really therapy would be great for…


#3

I agree, you’re romanticising it…

I’ve lived with schizophrenia for about seven years now. At first when the symptoms started so voices and thoughts I can only describe it that it was the only thing that had ever made sense in my life. I was okay at first, it wasn’t distressing but then it gradually got insidious. My life became a living hell.

It is not something to be romanticised, it is an illness, and sometimes can not be treated with medication, it’s lifelong most of the time, it’s not like a partial illness, like an infection which can be treated with medication and goes away.

It’s also something other people fear, in my country anyway, people associate it with danger. It’s gravely misunderstood. I dread the day I may have to declare it, in a job, partners, social services if I ever have a child, here it’s like a black mark. Only people who have known someone with it or have it themselves truly understand.

So just bare that in mind before romanticising it, I’m not being critical, just honest. It’s not something to be taken likely, and I agree, maybe this is something you should talk about in therapy?

Take care,
Meg.


#4

No, pans disease = schizophrenia, it’s the same thing.

Some know it and some don’t, thats the only difference.

They can make the “symptoms” appear different but it’s the same thing.

They told me, some people they don’t tell. Confusion.

And some people they do it to but it isn’t the same way so it’s not schizophrenia.

Almost, if not all, that the mind can do they can make happen in the mind. Visuals, auditory, memory, tactile, smell, taste, choices, perceptions, thoughts, control. all of it. It doesn’t have to look the same in all cases though, some will not even know it’s happening.