I liked a page on Facebook for the Treatment Advocacy Center, and I have often felt a little uncomfortable with the articles that pop up in my newsfeed that are posted by them. Most of their articles are about people with schizophrenia who after being unable to get treatment become violent or have some other negative outcome. The position they take and promote about schizophrenia seems to me to support all the myths. I feel badly for the people sharing their stories, but the people sharing their stories are parents or relatives not people who suffer from the actual illness.
This is the first sentence of an article that popped up in my newsfeed last week: “There are 3.5 million people in the United States with schizophrenia alone, a fate often worse than death.”
That sentence is so stunning to me, that I almost don’t even want to comment on it. Psychosis is terrifying. Psychosis is the most frightening thing I can imagine, because inside psychosis my worst fears often play themselves out. For example, I am afraid of being tortured, and I can’t even watch someone being tortured in a movie or on television. The thought of it is so horrendous and terrifying to me. But, when I was psychotic there was one point when I thought my husband was going to run my hand through a table saw to torture me. That is an example of the nature of psychosis.
Yes, it is terrible, but even after spending six months being actively psychotic, I didn’t want to die. When the voices eventually told me to kill myself something broke through in my mind (at the time I thought it was Jesus) and I ended up calling my husband and asking him to take me to the hospital. That trip to the hospital saved my life.
“a fate often worse than death.”
That someone who doesn’t suffer from paranoid schizophrenia would write that our fate is often worse than death is shocking to me. I don’t know anyone with schizophrenia who would prefer to die, or to not have lived. How can someone who has never walked in our shoes make that determination for those of us who battle this illness every day?
Schizophrenia is no walk in the park. The people who have it are probably stronger in some ways than most of the people who don’t have it – they have walked through fire, I guarantee you, but saying that having schizophrenia is “often a fate worse than death” is extreme and offensive.
What would you give to fall in love?
What would you give to see a sunset over the Pacific?
What would you give to taste food that is so good your whole body feels it?
What would you give to laugh so hard that no sound comes out?
People with schizophrenia are capable of all the things I just listed, and every one of those things is worth being alive for even if it means you have to suffer. Suffering is a part of the human condition. We all suffer. Just because I have to fight every day for reality and for my sanity doesn’t make me wish I was dead, or that I was never born.
Having my husband kiss me before he goes to work every morning, and putting my head on his chest before I fall asleep, makes me want to live well past one hundred.
Don’t tell me I have a fate that is often worse than death. If you think that is true, you know nothing about life and truly living. I have paranoid schizophrenia and if that is your attitude, I wouldn’t swap places with you for anything.