My fiance has schizophrenia

I love him very much...but for months now, the detachment has made me detach myself as some sort of self-defense. I don't want to let him go. I don't want him to be alone, but he thinks it may be better for him to be by himself. How much of his feeling is the illness and how much of this feeling is him?

I tell him that it's ok and that I will work through this with him. I have been with him for almost 5 years and as far as I know, he's only had 2 breakdowns. The first one was quite frightening. He wasn't on medication. He didn't leave his room and he definitely was hallucinating a lot, but I wouldn't leave him because I was so worried about what might happen to him if I did (as he tried to commit suicide twice before I met him). Then, it went away. He was wonderful, loving, kind, perfect and he was"there". This current episode has been going on for 4-5 months. It doesn't seem as severe this time, meaning he understands that he is ill, now takes medicaiotn and goes to a doctor. As far as I know, there are no hallucinations, but I also am not sure he would tell me if he were having them. He leaves and stays with a friend when it's really bad and locks himself away in the guest bedroom...but the problem is that I want to take care of him when he's feeling this way. He is so sad and down and me being worried about him makes him feel guilty and worse, so I try to hide it. But between his bouts of guilt, he can often be short with me and just do the staring off into space thing...but it's not 24-7. He wants me to ignore his illness and pretend that he's ok. I don;t understand. I do not judge him...I accept the illness. But he carries a lot of shame constantly saying he is weak...and can't feel.

I know he is freaking out about getting married. I think he fears having children...so do I as I have my own brain problem--epilepsy and schizophrenia actually runs in my family on both sides (though I seem to be the first with epilepsy and so far no schizophrenia, though I saw a terrible article linking of the two in an article and have actually often wondered if they are connected b/c I do have vivid and frightening, though somehow exhilarating, auditory and visual hallucinations (people actually talk to me and threaten me and I imagine reposnding to them, although I don;t think I talk back to them out loud--and they end after the seizure ends) during seizures--though this is somewhat common in epilepsy). I just see his misery. It is palpable and I want to protect him...I just don't know what to do? Do I risk it? I love him so much that it hurts, but is it better for him to not have to worry about feeling detached from me and from himself or is it better to stick by him between these breaks?

Also, I'm the only person who knows. He has never told his family b/c he knows it would break his mother's heart. But this is a very heavy burden to bear. I know I should go see a dr about this, and I take anxiety medication because I feel so out of control myself and his condition is affecting my work life and well being...I don't know what to do? I don't want to give up. Because he is a truly extraordinary person who is capable of making me very happy, but when he feels this way, all he can say is that nothing will ever make him happy...It hurts. And then I say "it's the illness." But what if it's just him? Where does one end and the other begin?

I have both schizophrenai and epilepsy. It hasn't stopped me having kids; and even though I do fear for them at times, I never regret that decision.

Anyway... what you describe about detachment is part of teh illness. Over the last ten years (I've been with my bloke for twelve) I've become more and more detached. He complains that I am unemotional now, that I don't show feelings, and worries constantly that I don't love him. In fact I do; more than he'll ever know. And I do feel things too; that depth of feeling just seems to get lost somehow between me feeling it and actually vocalising it. I'm not sure how or why it happens.

I'm told by health workers that this is part of the negative symptoms, and that it can improve over time with medication (not getting into the pro and anti taking medication arguments here. That is personal choice, and for me is dictated by circumstances) - we're talking long-term here, not weeks. I don't know; I've managed without taking neuroleptics long-term until recently and all I can tell you is that my problems with withdrawel from social situations and detachment have got slowly worse over time.

There are ways round it though. One thing I've started doing is writing and drawing what I feel; lots of people who are detached and find it hard to communicate through speech will actually find they can draw or write thoughts, feelings, fears and so on much more easily. I certainly can. I also find it near imp[ossible at times to explain things without wandering way off subject and forgetting what I was saying. Often I find I don't have the words for what I want to say, or that their meanings have changed; sitting down with a piece of writing or a drawing and going through it with my husband has really helped both of us; me to explain things better, and him to understand things more.

There is a tendency to try and put distance between us. I don't know why I do that even. I actually feel very vulnerable when I let him close to me. Can't even begin to tell you why... I don't know. Perhaps we'll work on that over the next few months.

Does your bloke have a keyworker that he sees regularly? If so, ask both if they'd be happy for you to take part in the meetings say, once a month. That's something else we're trying; I really hated the idea to start with but it has been a big help.

One thing with your feeling of wanting to protect him... I know my husband feels very similar. But for lots of reasons I hate that. Partly because I hate feeling dependant on other people for that protection. Partly because I don't want him to be in danger (as I sometimes feel I am). Partly because I have, in a way, just become self-sufficient and it's very hard to start sharing things again.

As for the question of where he ends and schizophrenia begins... I'm not sure that's the way to think about it. For me, the two are inextricably entwined. It is a part of me, and I, in a way, create it. It's very possible to make it the least important part of me; that's what I'm working towards now.

All the best. I hope there's something in there that helps.

Both of you should learn all you can about the word 'schizophrenia'. I'm starting to believe it is only a symptom, not an actual disease. A damage brain can be more susceptible to it, as well as people how are highly emotional or have a nervous breakdown. Also, people who are malnourished. The psychiatrist will only be guessing what you both have. If possible, it can take many years. If i were you guys, i wouldn't take those dangerous medications (psychiatric drugs) without first knowing what it does to the brain and body. I will give you a hint. Very Bad. I believe since it is your body, you have the choice in taking the drugs or not. Psychiatrist has no right to damage your brain without telling you first. This may sound silly but it is the truth. Let me take you out of the 'matrix' you are living in. The world of psychiatry is corrupt. The system has many flaws. Their past is barbaric. At present, they give dangerous drugs that causes destruction to nerve cells and they are liars. If you ask, 'is it safe?', they say 'yes'.
They introduce medication way too early. How can they fix their flaws?

Isme--

Thank you so much. I was just really upset last night...My guy is just very private, yet he can communicate with people but in a very shallow kind of way--I am really the only one who sees it and I think that both comforts him and scares him. He hides behind jokes and most people just think he's sort of this charming, slightly wacky, guy...and can talk to people but only briefly and then escapes...I guess, from what you're saying, that makes it hard to be around me because I want him to be honest with me...I'm always probing, but I've stopped doing this lately because it bothers him so much, but b/c I've stopped I feel like we're not communicating anymore...I'll try the drawing idea (although I bet he'lll be opposed to it as some sort of psychiatric trick).

I have always been an advocate of medication and try to compare my epilepsy to his schizophrenia. I would never go off of my anticonvulsants because then I would have seizures...I am concerned about the kinds of medication he takes though--he's only on an anti-depressant. He hates anti-psychotics and I understand as so many epilepsy meds make you feel like you're walking through a haze...

He has also been very resistant to me knowing what he talks about with the doctor. I have suggested couples counseling and he wants no part of that. But at the same time, he's going to the doctor, which is fantastic, b/c I know he doesn't like it (though he has grown to like it ) and it really shuts him down when he does go.

I know I shouldn't fear having children...I didn't really. I figured I'd just load my body up with folic acid and hope for the best. He's more hesitant though. He doesn't like how he acts around others and is afraid of how children might affect him and that he might screw them up, etc.

I am trying to work on not being so emotional...the problem is is that I am a REALLY emotional person and, oddly enough, he is very perceptive about my emotions as I try to hide them, even though that's all he ever does (maybe that's why he's so good at it). I know that that kind of emotion can be frightening for a schizophrenic, so now when he leaves to be alone, I try not to get upset and this has helped somewhat. I suppose that's why I'm taking anti-depressant/anti-anxiety pills now. I took them once before and was incapable of crying.

I'm just wondering if this is normal. Here's a typical conversation:

Me: Hi. How was work? I missed you.
Him: Don't say that. You're pressuring me.
Me: What?I'm not trying to pressure you. I just missed you and wanted you to know that I love you.
Him: I know. I'm so sorry about all of this. I am.
Both of us will then sit down, watch a little tv. The whole time he's surfing the internet, his leg is violently shaking. Then he'll go in the bedroom and play video games for hours. I'll occasionally go in to check on him. He'll give me monosyllabic responses (or none at all, like he can't hear me) and I'll go back in the living room, cry silently to myself because he's not talking to me (although lately, I realize he's just working to keep it together and respect that). I'll go back in. He'll ask if I'm upset. I say no (and I think in a rather convincing way). And then he just talks about his guilt...ugh.

Of course, the worst part of it is this behavior just makes me feel insanely guilty. When he does try to talk to me, it is his forced shallow chatter that he uses with others. That's what's hard for me. I feel like we're both lying to each other about how we feel in order to avoid an outburst of emotion. Perhaps he's fighting with a breakdown...I just wish he could talk to me about it. In fact, that must be what's going on here. I suppose patience is key here and I will definitely see if he's cool with the drawing idea (however, he may be the worst artist ever, so I'm not sure that will work!).

Things have gotten better. He now no longer says that he associates the panic and fear with me (for awhile I think he may have been a bit paranoid about me trying to control him or doing something to him--I think that's why he had to leave for awhile) and recognizes that the panic and fear are created from himself and his own "real" life where he has to connect emotionally. Unfortunately, I'm a big part of that "real" life.

Well, we'll see how things go. Lots of big stressful events are coming up. He's starting law school (which I'm currently in and it is incredibly stressful) and, well, the wedding is not certain at this point. I'm not sure that we'll ever be getting married, although he insists that we're still engaged and "not to ever take the ring off." If we do get married, we will elope, b/c I don't think he (or I, for that matter) could handle the stress of prying eyes of our families. But life is full of stress...I don't know where his breaking point is. I only hope for the best (and I'm a bit of an optimist when it comes to others!) and hope that with careful monitoring and attention to how he's feeling we can work through it all.

Anyway, once again, thank you.

Sara23,

you should go and find some people that have constantly been on anti schizophrenia drugs that are now in their 40's.

you'll see just how much damage these meds do.

Well, he's only on an anti-depressant, not an anti-psychotic, ok? And as I am on a medication commonly used for bipolar, but I am taking for epilepsy, and it has fewer side effects and no liver damage, Keppra to be exact, I do have hope in medicatiions.

Keppra has been great for me--the best epilepsy med I have ever been on--and I have been on a few as I have had been diagnosed with epilepsy for 13 years or so (although I believe I have had it my whole life in retorspect)...first Tegretol, which made me constantly tired and I had to have my blood levels checked, then Trileptal which was a bit better than Tegretol, but still a lot of exhaustion, and finally, Keppra--no side effects at all!

I know when I am not on meds, I am susceptible to seizures and they are not pleasant, so don't talk to me about medication, ok? I understand. On both Tegretol and Trileptal, I didn;t think that the side effects were worth the decreased seizures (as I don't have that many "big" ones to begin with), but Keppra has been a lifesaver. Although, it's interesting that my partial seizures never became threatening and paranoid until I was on Keppra. Before that, I got more of a euphoric aura, so I do realize these drugs are definitely interfering with the way the mind works (and I think my memory is not as good while I take them, but I'm still a smarty, so I'll cope). However, having a seizure restricts my driving and generally scares the hell out of me whenever I have them, as I lose control. So, to find a nice medication is good for me.

I don't mean to be hostile. I was you. I didn't take my medicine. I thought it will be fine and I stopped taking them. And then I had a seizure-- a big seizure at work as a teacher in front of my class and I woke up unaware of anything with a giant bang on my head (I fell straitgh back to the floor from a standing position and banged it on the podium) and I could have really hurt myself and possibly have emotionally damaged my students...and ever since then, I take my medicine religiously....and I don't have the big seizures like I did. The small ones (hallucination auras) are also very rare, and those were quite common. The hallucinations may be the scariest as I am conscious. I find that the benefits for me outweigh the costs. So, whatever. We'll just have to agree to disagree.


As an epileptic, I never truly understood why people were so upset by my epilepsy until I saw someone have a seizure. It is scary and the person looks like they're dying and you think to yourself, oh my god, this is what happens to me? It can really open your eyes and make you realize the seriousness of the situation.

Oh and certainly, the seizures kill tons of brain cells, particularly if you fall and hit your head and the fear of status epilepticus which is life-threatening???? I don't know how it works for schizophrenia, but I know that seizures are serious business and just the way I have described my partial seizures to my SZ fiance, I have a feeling they come from a common place in the brain--a similar misfiring of electric impulses.

A sense of euphoria or paranoid fright perfectly describes what I feel. I see and hear whole scenes in my head (and it's always the same scene and same people--deja vu) and I see people talking in my field of vision while I have these seizures. I know they are not real, but I communicate with them as they happen. And this seems very similar to SZ hallucinations. Fortunately for me, they end when the seizure ends. And I can go back to the way I was, but, on a sympathetic note, these hallucinations that I have only in the moment of a seizure scare me so much. I usually feel like I am going to die. There is a sense of impending doom....and to have that all of the time. I am so sorry everyone. It is rough for me, when I just have them every once in awhile and feel so scared....I end up shaking and need so much comfort. So, I am sorry. I wish everyone could get rid of these things because they don't feel good.

I am sorry. I am amazed everyday by my fiance. He is so strong. I wish he knew that.

Just a thought...but I am able to will my grand mal seizures away sometimes. If I really focus, I can make the hallucination stop and sometimes stop from having a full on tonic-clonic seizure. If the hallucination wins and I don't will it away, I always have a big seizure. I kind of wonder if the same thing is possible in SZ?

And when I am trying to stop it, I often tell people around me (And I am unaware that I am doing this actually (b/c I am inwardly busy communicating with my hallucinations)), but apparently it has happened more than once) to "shut up, shut up. I need to concentrate"...

Epilepsy and schizophrenia seem really similar to me... does anyone have any thoughts on this?

Thanks.

You know my great grandma was schizophrenic (and sadly received shock treatment and was hospitalized for a time, but it's this weird family hush hush) and I think maybe, if I described these things and hadn't ever had a tonic-clonic seizure, then people would think I'm schizophrenic. Even my neurologist gave me a bit of an odd look when I described what I'm telling you now, but finally said, it sounds like you have temporal lobe epilepsy...though he was confounded by the vividness of my hallucinations.

I wonder what do you guys think? It's just a thought. Is the difference that I know that the hallucinations were part of a seizure (and they instantly end and I can feel the weirdness and otherwordliness of the seizure occur when it happens) and that people with schizophrenia don't always know it's part of their illness and it doesn't feel weird, but natural?

Sorry if this is offensive. It just seems too similar to ignore. And I'm very curious about the connection. Because I feel totally out of my mind when I'm having a seizure, so I' d just like to know.

Thanks.