What is it like to be Schizophrenic?

I spend a lot of time online. Probably more time than I spend on anything else. One of the places I "hang out" is http://www.schizophrenia.com/. There is a lot of information there including a forum for people with this disease. There I have met a whole community of people with whom I've become friendly. (There are also forums for parents, spouses, professionals and anyone else who may be interested as well.)

I have learned a bunch of stuff at this site... For one thing, all of us with this disease, although we have individual stories and struggles, are very very much alike in the ways that we suffer. One of the biggest problems we have is with finding energy or the motivation to do really ANYTHING at all. This includes showering, brushing teeth, picking up after yourself and really anything other than sitting online all day.

It is very hard for "normals" to understand this. Years ago, I would not have understood it either...but now these things pose a great struggle for me. I used to be a very neat person, but now my personal space is chaotic and messy. (I try to keep the main areas of the house neat though, out of respect for my family). The strangest part of this is that it doesn't even bother me. I feel more comfortable with it this way. Maybe because my mind is chaotic also.

I would not really say this is laziness. Laziness is something you can help. This lack of motivation and energy is a "negative symptom" of schizophrenia (sz) and is worsened often, by the medication for the disease. Similarly, another negative symptom of sz is a "lack of affect"- or in other words - lack of expression of emotion. It's like the disease sucks the very life out of you and leaves you flat and dry.

On the forum, in the area for spouses, one husband asked "Is it possible for schizophrenics to truly love?" I was gratified by the answers he received. While sz's have trouble expressing affection or love, their inner experience of love is just as strong as it would be for a normal. Of course, this varies with the individual....just as it does in normal people. I so much wish my family could understand this. They think because I appear cool and disinterested, that I do not truly love them and, as a result, they have withdrawn their love from me. This is endlessly frustrating for me.

Of course, I am uncomfortable with overt displays of affection, even hugs are hard to take at times....yet my inner self is pleased with gestures of love. It's very hard to explain, this schism between your mind and emotions and body....how your mind can be pleased with a hug and your body wants to run from it, but that is the life of someone with sz.

Another thing that I found from these new friends is that we all tend to be very isolated....more comfortable alone in a room than with other people. That the noise and confusion of public places is overwhelming and upsetting, and that in such arenas, paranoia becomes a serious difficulty. As a result, we tend to spend almost all of our time at home by ourselves.

Paranoia is something that embarrasses me. And it's something I really struggle with greatly. Even during my years of remission, I often had problems with this type of thinking, but mostly was able to hide it. When I go out, I am often plagued by the idea that policemen and security guards are following me and about to catch me for some imaginary evil thing that I've done. When I am actively psychotic, I am so terrified of people that I think they are really going to harm me and this causes me to take measures to try to protect myself. These measures can be construed as violence, but truly they are evasive, self-defensive actions. Please note, that most sz's are quiet and mild mannered and wouldn't ever think of hurting anyone. The idea that we are sociopaths is wrong and greatly distressing to us.

These are just some of my personal experiences with this destructive brain disease. I thought maybe they may help some of you to understand us a little bit better.

illustration by Cynthia Lott Vogel...copyrighted by the artist.