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Why I Still Hate Schizophrenia

Let me be clear, I love my son Ben with all my heart. That will never change. If you’ve followed this blog or read my book, you already know that about me. If you, too, love someone who has a mental illness, you share that feeling or you wouldn’t be here on this site looking for support.

But, let’s admit it. These illnesses suck.

Love my son, hate his schizophrenia.

Not Fun in real life

Why this post, today? Because, once again, the game of Chute and Ladders that is “recovery” has made a move down the chute – and I don’t even remember throwing the dice to land on that fateful spot.

Spotting Relapse Symptoms in Schizophrenia

Family members of those with mental illness get extremely good at spotting signs of relapse. In our case, phase one is when Ben gets overly talkative, but in a very forced way.  “MOMMY, HOW WAS YOUR DAY? TELL ME, I CAN’T WAIT TO HEAR!”.  Too cheery, too loud, too forced. Almost as though he is trying to drown out increased noise in his head by imitating social graces.

That is how Ben was acting yesterday – and also argumentative, childish, and distracted.  If we aren’t careful, phase two will come on its heels – distracted almost beyond engagement, depressed, uninterested in the things that have come to give him so much pleasure and meaning when his mind is balanced: friends, school, his job, cooking, family time, board games, video games, bike rides and walks.  He will plug in his ipod and headphones and tune us all out.

I hate that phase. But if gone untreated, the next phase is even worse: psychosis. The

Artwork by a Teen with Mental Illness

wait for him to be “sick enough” to be hospitalized. And, even then, the difficulties of getting him to take the meds that work. The law is NOT on our side, even when he gets a bed in a psych unit. This we know from experience: he can languish there for too long, taking ineffective meds at best or none at worst, while we hope and pray and plan for a way to “get him back on the right path.”

So we try to nip relapse in the bud before in blossoms once again into chaos.

Can We Find Reasons and Solutions for Relapse?

First question: Why might this be happening? And right now, we have no clear idea.

  • Could Ben be tampering with his liquid meds again, diluting them despite the lockbox that holds them? Did he get hold of the combination somehow? So we have changed the combination, and fortunately his refills are due so we will have a new bottle tomorrow.
  • Is it the fact that right now Ben has no structure? Spring semester hasn’t begun, he is still in seasonal-layoff from his job, his “room-mate” (a friend that currently lives with us, and is Ben’s best friend) was away this week,  and I haven’t been home much this week due to work. So – stress? loneliness? lack of structure/purpose?
  • Did he somehow smoke marijuana, or drink? Ben goes to meetings to stay clean/sober, and has been for years. But – well, you never know.
  • Did he purge this week after taking his meds? He used to do that but had stopped, and we require “sitting time” after he takes his meds. But were we too lax? Does he need to be watched for more minutes?

This morning Ben is still asleep, at nearly noon. This is often a good sign that his meds are effective, but I don’t know. Right now, we’re just enjoying the peace and quiet of Ben, asleep.  Then, it’s all serenity prayer stuff: do what we can (call the psychiatrist, get new meds, etc), let go of what we can’t do right now (cure schizophrenia), and try to stay with the idea that we have handles this before, and will handle it again.

Why Hate Schizophrenia?

Parenting is not about perfection, as we all learn very quickly when parenthood is real. Hopes and dreams must change as life happens. Why hate schizophrenia?  Because we don’t hate Ben. We love him – but that damn illness sure gets in the way of so much possibility.

I often think about my friends who have raised a beautiful son with Downs Syndrome. Their son Eddie is now 40, and is doing quite well – loves music, works part-time, enjoys photography. But my friends’ job as parents is quite different from what it would have been without the Downs. Caregiving lasts longer, vacations always include Eddie, medical issues come up frequently. Yes, they love him and will always care for him. But it isn’t always easy – nor is it “fair”, if there was such a thing in life.

I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities.

Schizophrenia has stolen joy from his eyes, clarity from his mind, possibilities from his future, depth from his relationships, money from his wallet. He wishes for a car of his own, a job above minimum wage, a life that includes progress – but he seldom complains. His old high school buddy is now the dentist that fills his cavities. His little sister has accomplishments he may never see. Yet he is one of the nicest people you’ll ever meet.

Today, though, it may be hard to be around him. Today, Ben may spend his day sitting at the local Starbucks, the “weird kid always singing to the music in his headphones” sitting in the corner with one cup of coffee for hours (though he does tip well). I hate this. I hate the ticking time bomb, always in danger of being re-set, that is schizophrenia.

30 thoughts on “Why I Still Hate Schizophrenia”

  1. That sucks. My mental illness stole my life and my mind too. 🙁 its stolen everything from me… my future, my potential… I’m bounded by it

  2. That’s real. That is how people feel when close family realizes they have schizophrenia. You probably realized that before they did. And didn’t share that with them. You talked to trusted family members. Trusted friends. Maybe even pastors or fathers or reverands. But you tried to deny that your family member had schizophrenia.

    Whatever. Odds are they don’t give a **** what you think. The person with schizophrenia probably thought of some deep **** that you refuse to acknowledge.

    Y’all know about global warming, mass extinction, how ridiculous religion is. You won’t admit it. That is the tip of an iceberg. Your family members schizophrenia may not even include the few topics I just mentioned.

    Overwhelmingly the odds are that there is an honesty being prevailed…. And your family wants to know why they have to see this truth. They want to find the fault. Be careful what you do with that fault. It really does matter. To them. To all of us. To you.

  3. I have schizophrenia and as I feel for you I have been deterred by all the professionals and those with first hand knowledge of the disease.
    I accept my diagnosis but I DO NOT accept my prognosis.
    As there are billions of individuals on the planet so are there Trillions of forms of this illness.
    My TRUE belief is that psychiatry is in the stone age. Yet necessary, they do not have grasp of the scope of individual manifestations.
    I hate the psychiatric community, I feel beyond stifled by them.
    If you take me personal success and weigh it against my psychiatrist assessments of me you will finds light years of separation.
    MASSIVE progress on the scope the world cannot yet understand is needed for psychiatry until TRUE HELP for individuals fighting this illness can truly honestly and successfully take place.

  4. You can’t expect other people to understand what your going through. I do. The last two years have been a roller coaster. My son is an adult when it struck he is 39 now. There are no locked drugs and I depend on him to “NEED” his medicines. We just had a huge fight from him answering the door to a drunk total stranger and popping him in his pickup running him home in California. Judgement is poor, he is following Christ. Most are religious the doctor tells me. I love Jesus I want him to heal my son. My life is hell it is spent doing hospitals, rehabs, and 911 calls. I have cut him down when the voice told him to prove that he loved God by hanging himself. I love my son. I have had more counseling than I can throw up at. I understand, I am alone, no other family member has to put up with this. Oh sure they visit but my life is not my own. He wants a family, a wife, and children. I think this hurts more than cutting me would. I want all those things for him I love him. People are so ignorant to just say relax enjoy….perhaps they needed to be by his side when he woke up out of his coma. Birthdays trigger awfulness. So do my vacations. I don’t take vacations anymore. I asked his father to help he remarried she is afraid of him to spend the night. They live 2 states away just a week? Please, I would love a week just to not be scared the phone is going to ring that he has amnesia. Then there are the times when he is totally normal. That isn’t today. I love you sister of fire I’ll say a prayer for you too.

  5. I don’t understand what is wrong with sayyin, Hi mom, how was your day? that seems normal to me. Why are you expecting so much from him when he is sick? Don’t get bitter yourself, take care of yourself too. The wounded soul is a great article on the internet about some possible solutions to this and don’t get me wrong, but it works for me explaining it all. I have had no caretaker ever and left to the streets. With a lot of expectations of me too. I am enough. I don’t have to work harder. I take no pills now and out of psychosis, when I had no hospitiliazation or treatment for anything, just called crazy for seeking treatment. I listen to quiet uplifting music and people who tell me positive things about myself and read positve books about how I am loved regardless of what I have. take each positive and reinforce it. You seem to be expecting perfection from an imperfect person. Maybe he didn’t have too much fun ever. I donn’t know how old he was when this started, but maybe enjoying himself is ok if it isn’t tool loud and he’s being independent. We all seek independence in a way. THat is healthy. Give yourself time for yourself too. Self care is important for caretakers. I have been sick a long time on my own. Now I like flowers that bloom and music that uplifs and enjoy peace in my brain. That peace is freedom within itself and feels great. The burden to perform has been lifted and I am loved. I didn’t like people staring at me while I was trying to get well on my own and having a panic attack and my X wanting me to fix his problems. What a crazy joke. He’s not there to make you feel better and watch all the time. That’s intimidating to me. Help him with a goal if he has one he likes. Maybe he doesn’t know what he really likes. Maybe he never had a chnce to know that. I never did. I had to grow up too soon. No I know what I like. to be accepted and listened and talked to like I am a person that matters, not just listening to others all the time tell me what to do. I am trying to rely on what God tells me what to do now. Others opinions of what I should be doing and put downs never helped a lick. I am not a clone. Whose to say what is normal in this chaotic world.? Personally, the pills made me sicker and drugged out. I dream of an opportunity to be creative and play tennis and learn to draw and things I never got to do. But nobody will provide me that opportunity. They just think I am bad and I don’t need them anymore. We don’t have to live up to the expectations of the world or others if they don’t uplift us. So, he;s a little childish. We all are in some way. Selfish. Write a list of gratitude like we are all expected to do. we all have struggles, but we can be greateful for something about our lives. Do some research, be proacitve, fight for him , not against him. He’s not there to give you peace. He’s trying to find peace. Sorry, if I seem harsh, but I found peace and I like it. It’s my right and my peace for me. My kids are workaholics with no fun and joy in their lives. Is that better? Some of my family are addicted to trips, but don’t seem to enoy them much or talk about their experiences with them, they just plan another one. That’s their business. We have to follow the rules of the Government and of places we go to, but our homes should be a place of relaxation for everyone. Relax and don’t worry so much. Worry doesn’t do anything and being content in whatever our circumstances is important too. Don’t compare yourself to others lives. They have their own issues I am sure. Envy is not so good. Accepting is surrendering and enjoy blessing that come your way.

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