Patty's interest in schizophrenia is due to the history of mental illness in her family. She has two children with PhDs in psychology.
Living with Schizophrenia
Living every day
I live with schizophrenia becuase my younger sister was diagnosed with the disease over four decades ago. She was in her early teens when she was diagnosed with the disease. It not only changed her life but our family's life as well. I am just thirteen months older than Kathy who started hearing voices when she was fourteen years old, an unusually early onset for schizophrenia. Schizophrenia altered our familly life, forcing mental illness to become the new norm in a family of five with two teenagers, myself and my sister, and a new baby brother. The family involvement in a fundamentalist church steered the path of her treatment when well meaning members condemned the demons that had entered her body and tried to expel them to no avail. In the 1970's, parents were blamed for the disease and the behaviors it elicited. Others in the family simply blamed my sister. She was spoiled and badly behaved, they said. She toyed with Ouija boards and therefore brought this horrible disease on herself.
Today, forty-seven years later, some things have changed with the acceptance of schizophrenia in our communities, but not a lot. I have witnessed professionals whispering among themselves about the stigma of schizophrena. They snicker behind closed doors and whisper about strange behaviors to their co-workers, outwardly showing empathy but inwardly demonstrating a different lack of acceptance.
The hardest part of any change in life, is not knowing what is happening. When you can't guess what is wrong, but know that something is different, that is the most difficult part of this journey.
As children, Kathy and I enjoyed the normal relationship of two siblings. We played together, we bickered, we teased, we played dress-up, and we walked to the school bus every morning together just like sisters should.
But at age 14, something started to change for Kathy. She became more moody. She started seeing things that I couldn't see. Objects started talking to her and she claimed to hear voices that no one else was hearing. The conversations with the voices were so real to her and it was maddening for me, because I couldn't figure out who she was talking to. I didn't hear anyone or see the people she saw but nevertheless, they were present to her.
Kathy was a well mannered student at school, but at home she turned into someone else. She blatantly opposed our parents who at that time were caught up in a new-found realization of God in their lives. Our strict home became more strict and Kathy struggled against it. Where I would quietly sneak and get away with the sin-ridden behaviors, she blatantly charged against the new set of house rules. Punishment didn't stop her; she simply found another way around. Our dad decided that our dress length had to reach below our knees to insure modesty. For 2 young girls in the 1970s whose friends were wearing micro-mini skirts, it was humiliating to show up at school in a dress that looked like something our grandmother would wear. For me, it was a simple rule to get around. I didn't argue, I wore the dress as far as the school bus and then rolled the waist up until my dress was the same length as everyone else. Kathy on the other hand, cut 12 inches off three new dresses and then showed our mother.
When Kathy talked to the bathroom wall at school and begged it to not hurt her, her classmates and teachers recognized that something was going wrong within this dark-haired young girl. But our parents blamed her friends and the Ouija boards she played with on the school bus. For nearly two years, they looked the other way, insisting that her only problem was that she was spoiled.
At age 15, a local minister recognized Kathy as she trudged along a major highway in mid-January without a coat. Delusional, she was heading out on a 2,000 mile journey to meet up with her teen idol and marry him. The minister returned her to school and finally, our parents had to recognize that Kathy needed help. Understanding that the person that has schizophrenia has little or no control over the symptoms goes a long way toward being able to live with the disease. For the family that places the blame on the person, or their friends, it will be an unnavigable road. Adding anxiety and blame into the mix will only increase the symptoms and make the living arrangement more problematic.
What should I do?
- Learn how to accept schizophrenia
- Educate yourself
- Accept help from others
- Reach out to others and have conversation about schizophrenia
- Find your sense of humor
- Speak out!
Schizophrenia is encompassed with stereotypes. Psychoanalysts in the 1940s pointed a cold finger at parents, and blamed mothers for their child's mental breakdown. Another misnomer about schizophrenia is that it is a split personality disorder when in actuality, it is the distortion of reality and how the person relates to others and expresses their emotions.
Schizophrenia is hostile and it invades the human mind, threatening to conquer sanity.
By age 15, the disease absorbed Kathy's ability to see real from false. The bedroom walls spoke to her. Snakes crawled from the wallpaper and covered the floor of her bedroom. She screamed in terror, tortured by the visions in front of her eyes that threatened to destroy her mind. She pleaded for the visions to go away. She bargained, offering unthinkable acts to find peace, to have the horrible hallucinations disappear. But the voices drove at her relentlessly. They confused her and then took advantage of her confusion to drive her into madness. Little by little, schizophrenia tore her apart and us along with her.
Over the next year and a half our home transitioned to a haunted house that I dreaded to come home to. The church deacons visited and attempted to throw out the demons that had taken up residence there but the forces weren’t leaving. These monstrous parasites continued to feed on us to the point where survival required our full attention and all other normal activities came to a halt. The quietest night was destroyed by haunting, horrific screams as Kathy battled against some unknown force inside her, whether it was threatening to kill her or to force her to do something she didn’t want to do. Her torture was unbearable for her and for us.
Quietly one day, at almost age 16, my sister was placed in a mental hospital, in a beautiful location in the heart of Amish country in Eastern Pennsylvania. Over the next 40 years, hospitals would become a place of retreat for her, as she learned to look to them for safety. They were a place that was quiet, without chaos, the voices could be silenced here, the demons kept at bay, where medication and group experiences did much to calm her for a period of time. For her, it will always be this way. The hospital and the medications offer her an avenue out. They give her a place to escape to, when she just can’t live another day facing the demons and feeling the parasites eating away at her. She takes this route to a vacation away from the darkness and away from what will kill her if she does not have help.
If you are living with schizophrenia, learn all you can about the disease. Learn how it affects the brain, how it affects the individual, and learn how it affects the family. That way, as the disease unveils, you will be prepared for what you are going to see and experience. The internet is full of information on schizophrenia and there are plenty of books available on the disease. Movies have been made on the lives of people with schizophrenia and there is a lot of truth behind the portrayals. Undoubtedly, reading on the subject will put a face on the disease but trying to shut it out, pretending it does not exist will only heap shame and discouragement on the lives of people already struggling so hard.
It is so much easier to go through a hard time when someone else walks with you. If you or someone you love, has been diagnosed with schizophrenia, accept help. This is not a disease that can be managed alone. From my own experience, the disease is highly unpredictable, especially without medications. I don't know if getting help for Kathy more quickly would have changed the outcome of her disease but I do know that there were years of denial that could have been easier for her, had she been treated immediately, lifting the blame she felt that she was doing something wrong. To this day, at age 55, she still believes that if she can just change something about herself, her disease will go away. She has lived a lifetime battling against her illness. To look at her, I see exhaustion, weariness and disappointment that never for a single day has she been able to call a truce against schizophrenia. She is a soldier who has had to fight nonstop against this enemy for almost her entire life.
Psychologists, group support,and medications, all are avenues of management to help those living with the disease to create an environment of stability and acceptance. Living in this altered reality is full of land mines and ambushes which with appropriate help, the individual can be steered around and down a safer path.
Early on, Kathy did not do well in her battle. Medications didn't work, counseling was misdirected, group sessions were a disaster. She did not have the tools to quiet the voices so instead, she learned self defense, by huddling in a quiet area and waiting for the invasion to pass. Once it faded away she was able to pick through the pieces of her war-torn mind and rebuild what she could. Although unsuccessful at driving the disease out, she still fantasizes that someday she will "be well" as she puts it.
She has built her walls of defense and guards them relentlessly. She takes her medication like clockwork, never misses a dose because she is terrified of the invasion that might occur if she forgets. She watches carefully for infiltration through conversation, anxiety, or even a suspicious look from anyone in the room. Her anxiety elevates with controversy and she is quick to barricade the doors and windows of her mind, shutting out any attempt for the voices and hallucinations to gain a foot hold.This is her life every day as she battles against the darkness of schizophrenia.
We join Kathy in battle. To spend time with her is to be drawn into the drama and the struggle that correlate with her disease. You can’t help but be affected by it. Living with a person who has the disease, is like living with the enemy. You have an intruder in your home and like it or not, that demon is here to stay. Its up to you to figure out how you will get to tomorrow.
Somehow, in the middle of this madness, Kathy has learned to draw a line that she does not permit the voices to cross over. She has never hurt anyone in her moments of psychosis, and is quick to reach for help to find her calm again inside walls where they can't hurt her.
What you shouldn't do if you are living with schizophrenia.
- Don't blame yourself or others. This is no one's fault!
- Don't ignore the illness. It won't go away.
- Don't try to hide from the symptoms.
- Don't be ashamed. Stand out and be proud of who you are!
- Don't wait to get help. Act now.
Finally, I believe in public awareness. The stigma surrounding mental illness leads to discrimination which in turn exacerbates the problem. When discrimination occurs, it affects housing, social interaction and employment. Hiding schizophrenia behind closed doors because of the mark of disgrace it tends to stamp on the afflicted and their families offers a warm and cozy environment for false understanding and labeling to grow. When our church leaders found out that Kathy had schizophrenia, she was barred from attending youth activities because of the fear of what she might do. The experience was humiliating, isolating and demeaning for her and our entire family.
Unveiling schizophrenia can open the doors to stories of hope and encouragement for those caught in the disease's clutches. Empower the person to live unashamedly by expecting them to do as much for themselves as they can. Don’t try to shield them from the world. What will they do when you are gone?
My sister has a sweet personality and lots of friends. When she was hospitalized a few years ago for an appendectomy, I felt like I should be there to provide companionship because she was all alone. I was thinking, "Who would visit a schizophrenic?" Looking back now, I was following the stigma of her disease. How surprised and happy I was when I couldn't even get into her hospital room because there were so many people there waiting to visit her.
Now I know that she is not a "schizophrenic". She is not identified by her disease; it does not make her who she is.
I also know that facing schizophrenia unashamed is easier with a sense of humor. This illness is not kind but is better coped with, with a little humor. Laughter relieves anxiety and is a very good medicine that requires no prescription. If your neighbors are staring, then stare back. Take your discomfort and place it on them instead. Don't hide!
Living with Schizophrenia
Going back to the original question of how to live with schizophrenia, the answer is not simple. There are no magical drugs to cure, no best health advice to follow, and no recommended daily dosage of anything that will insure a barrier between the disease and those that have to live in the same home with it. You can’t wipe it off the counters with a disinfectant or flush it down the toilet with a squirt of toilet bowl cleaner; no matter how hard you try, once it has moved into your home, you are stuck with it and its devastating and frustrating effects for the extent of your life span.
You can get stuck in the illness and wait for changes or you can take control of the life that is yours and steer the disease to a place where it minimally affects your daily routine. Move ahead, don't get stuck here.
Live with Schizophrenia
Can you live with schizophrenia? The answer to this question is answered with another question. What choice do you have? To date, schizophrenia is not curable. The symptoms can be managed but always, with or without medications, they can come forward again and again. Whether it is you or someone you care about, you are already living with schizophrenia.
But we can learn to live better with schizophrenia by
- accepting its presence
- learning all we can about it
- accepting help and then,
- speaking out to remove the stigma surrounding it.
We can co-exist with this disease and allow those people afflicted to live the life they choose in their community.
Patty Poet (author) from Suffolk, VA on September 11, 2014:
I am so glad that your daughter is managing her illness and that she is safe in your home. That is so important. My sister has lived in domiciliary care for the last 30 years. For her and for us, based on family dynamics, I have always felt this to be the best choice for her. I see her every week and she calls me often. For her, living at home would take away the level of independence that she has achieved. Our mother would love to care for her but I think that would rob my sister of her highest goal and that is independence. At least in dom- care she can enjoy a level of self decision making that although my mother loves her tremendously, she would be unable to cooperate with.
Denise W Anderson from Bismarck, North Dakota on September 09, 2014:
My daughter was diagnosed with schizo-affective disorder at the age of 24 when she had her second delusional episode that landed her in the mental health unit. She, too, thought that her dream lover would come and take her away. She waited in the hot sun for four hours, wandering around a parking lot until she received second degree burns. The police brought her to the hospital. It was then that we realized that something was not right. Although she had other mental health diagnoses, this was different. The second time she was in the hospital, it took months to bring her back to reality. Right now, she is home, and maintains well on the medications. Our goal is to keep her home as long as possible.