photo by billy lam // cc
This is one of many True Stories interviews in which we talk to people who have experienced interesting/challenging/amazing things. This is the story of Sarah and her father’s mental health.
Tell us a bit about yourself.
I’m Sarah. I’m 30 years old. I’m originally from a suburb of Philadelphia, but I’ve been living in Portland, Oregon for the past decade or so. I love to travel and go on little adventures as much as I can, but I am also really quite a homebody. I have a strong appreciation for the domestic arts – cooking, baking, crafts, gardening, canning, and so on and I write a blog called New Wave Domesticity.
I think a lot of people have misconceptions about paranoid schizophrenia, who it affects, and how it affects them. For those of us who don’t know, what is it? And how does it affect your dad in particular?
There is no one way that schizophrenia presents itself, but generally the most common symptom is auditory hallucinations – hearing voices that aren’t there. Every person’s hallucinations are unique to them, but the vast majority of them are based in paranoia and negative self-perception. Schizophrenia symptoms generally present themselves later in life and are sometimes triggered by a stressful or traumatic event. Anyone can have schizophrenia, but there seems to be a strong genetic component. Most people with the disease are actually incredibly intelligent and some have become famous musicians or mathematicians.
My dad suffers from auditory hallucinations and he basically believes that there is a radio transmitter in his brain feeding these voices from someone who is conspiring to ruin his life. His delusions onset in his twenties after he had a routine surgery on his knee. My dad keeps this hidden 99% of the time and has always held down a job in which he very much kept to himself. He’s a pretty normal guy the vast majority of the time and if you met him, you would never know.
When did you realize that your dad was struggling with a mental health issue?
I guess I always knew there was something wrong, but we didn’t talk about it. It was really the proverbial elephant in the room for our family. I would sometimes hear my dad yelling and going on about these people that were after him and conspiring against him to ruin his life. Sometimes he would even tell me they would come after me next. I was pretty genuinely afraid of some group of people or monsters coming after me when I was little.
The first time I think I remember a real diagnosis was when I was about 10. He and my grandmother were fighting about it and I think that is when I heard the words for the first time.
How did you feel when you heard your dad’s diagnosis?
When I heard the words, I remember them hitting me really hard. There were words for this… and if there are words for this, then I wasn’t alone and there was information about it. Maybe there was even hope of it getting better. Even at 10, I think I knew it was a big deal to be able to have language for it. It helped me to not be afraid of invisible monsters, but instead opened a door of many years of learning what those words mean.
How has his diagnosis affected his life? How has it affected YOUR life?
Unfortunately, my father has never received treatment for his disease, so it is always part of his daily experience. My father’s paranoia and delusions told him the doctors were in on the plan to hurt him and so treatment for it wasn’t going to happen if he had anything to do with it. In his mind, I think he doesn’t believe he is sick, but rather he genuinely believes the delusions to be his reality. I know it is a really painful thing for him to deal with, but he keeps all of it a secret most of the time. My dad goes out, he goes to work, he is an amazing guitar player, and has a knack for fixing things. It’s a pretty silent struggle for him, but sometimes it does come out as he interacts verbally with the voices when he is angry or upset.
His illness has definitely impacted my entire family dynamic and my relationship with my father. I had a pretty traumatic childhood and I developed some really bad coping mechanisms as a result, but I’ve worked really hard to get past that. I think the whole idea of a family secret really hurt my ability to trust anyone.
Schizophrenia has a strong hereditary component. Does anyone else in your family have it?
To my knowledge, no one else in the family has it, but we also don’t talk about it. It’s very possible that someone has in the past or present does, but unfortunately because of the intense stigma about mental health, it’s not really a dialog that my family has often. I don’t even think most of our family knows about my dad’s diagnosis.
I once read a statistic about schizophrenia onset being most likely before the age of 27 and on my 27th birthday, there was a moment of relief deep down for me. I don’t know how reliable that statistic was, but that made me realize that it was more a real fear of mine than I wanted to admit.
How has your father’s diagnosis affected your feelings about family and familial responsibility?
I suppose the big thing is that my father’s diagnosis made it hard for he and I to connect. Schizophrenia is a very isolating disease and I think it had a real impact on how my father relates to and connects with others. There was also a time where I felt resentment to my mother for “making us go through that.” I realize now that wasn’t fair to put on her.
It definitely had a huge impact on how I perceive family overall. It created a lot of tension in our house and also created some sense of isolation because it was this big secret that we kept. I really wish my family and I were closer, but I think I don’t really know how to have a family in some ways. I recently married into a really lovely functional family and it was really bizarre to me because I just don’t really know how to be a part of it and I feel bad that I create that distance with them.
I think the hereditary nature of schizophrenia has definitely had a big weight on my choice to not have children. I made the decision in my teens (and still feel strongly about it) that I just can’t live with that possibility of passing it on and would not have biological children. I choose not to have children for other reasons as well, but that definitely plays a role in the choice.
Have there been any silver linings to this?
I think the silver lining for me is that I am proud of my dad in this really unique way. Schizophrenia is a life altering and life shattering disease. People with the disease are 50 times more likely to commit suicide than the general population. Imagine if you had to wear headphones in your ears every single day that played a message about how you were ugly, stupid, and a failure…and that even told you to commit suicide – that would be awful for most of us. I really don’t know if I could handle it, but my dad does.I think about that a lot. He gets up every day and he moves on. My dad is a survivor and despite all his faults, I see him as an incredibly strong and admirable human being. He worked hard my whole life, he did animal voices for me and read books to me at bedtime, and he walked me down the aisle at my wedding. He was the best dad he could be. I am proud of him for never giving up even though he wasn’t dealt the best cards. It’s a huge inspiration to me.
I am also grateful that these experiences encouraged me to have a more opened heart and learn as much as I could about mental health. I was diagnosed with depression and anxiety in my late teens and I’ve been much more open to treatment and talking about my own mental health than I might have been had I not grown up in the situation I did. I have met some amazing people through sharing my experiences.
If we know someone who has been diagnosed with paranoid schizophrenia, how can we help? What are some things we shouldn’t do or say?
I think compassion and an open mind are the most important things when dealing with this kind of diagnosis or any other mental health issue. Schizophrenia is a disease that is not kind to people and that’s important to remember. There is a lot of fear around the disease and I absolutely understand why – it can be scary to see someone you love, or even a stranger on the street, express delusions. Sometimes people with schizophrenia are dangerous, but more often they aren’t – they are just like everyone else. Everyone’s situation is different, every person with schizophrenia deals with it differently.
It’s necessary to recognize that the delusions and/or hallucinations are very real to the person experiencing them. You should not be dismissive or argumentative about what they are experiencing. Try to stay as calm and nonjudgmental as possible as the person is really likely to respond to your emotions and if they are heightened, it could escalate their experience.
Early detection and treatment are important, so if you feel that someone in your life may be developing signs of schizophrenia – talk to them as soon as you can. That conversation will not be an easy one, but it is very important, so it might be a good idea for you to first have a conversation with a professional about the particular situation at hand and how to approach it. I strongly advocate finding support for yourself as a caretaker or ally to someone with schizophrenia. You will be much better for that person if you take the time to support and care for yourself.
On a side note, no matter what your situation is, I want to make a plea that you try to keep an open mind next time you are talking to anyone about mental health. Try to re-frame the way you mentally respond to that “crazy” guy on the street who is talking to himself because he might be someone’s dad and you really don’t know what he has been through to get to that place. If a friend tells you they are having mental health issues or know someone who is, take a moment to find compassion and try to talk openly with them. Make an effort to see people as whole and dynamic human beings instead of diagnoses. If more people are aware of breaking down the stigma of mental illness, I genuinely feel we could make the world a better place and create a better life for people living with mental illness and their loved ones.
If you have questions or want to share thoughts, I encourage you to comment or email me. I’m not a professional and I might not be able to give you advice, but let’s break a little stigma and talk about it and support each other.Thanks so much for sharing your story, Sarah. Do you guys have any questions for her? Have any of experienced something similar?