Overcoming a Family History of Mental Illness to Help Others

It seemed like any ordinary day. I was a happy young child. There were some kids in my grade I called friends. I equalled them in sports and surpassed them in schoolwork. But on this day my world would turn upside down.

I recall there was an ambulance in our back yard. I didn't understand what was happening. My mom had tried to kill herself again. I didn't judge her. She was my mom, and she was so good and kind and loving that I never understood the negative bias surrounding mental illness. But my so-called friends were much more judgmental. It didn't help when my mom spent long months in the hospital getting electroconvulsive therapy (ECT),  and I started to go into a depression myself.

"Schizophrenia affects one in 100 people." This is what a poster in my high school said. "Schizophrenia affects the sufferer and their family" was also part of the poster. If only I could have understood what "affects the family" meant then. When I first read that, I was 18 and in active psychosis.

From 18 to 30, my family suffered because of me. I had depression, went off medications, went in and out of hospitals and even once hitchhiked across the United States without any money or a visa. But at 30, I accepted treatment and began the long, non-linear road to recovery. My parents helped in every way they could. They were my best friends and biggest advocates. They fought for me when I was ill and no one else would. Both my parents are gone now. I learned from them I had to take responsibility for my life, for my actions, for my illness. I thank heaven for them every day.

A lot changed over my years since I was diagnosed at 18. I'm now 52. I needed time to get on the best possible medications and to adjust to taking them. As my life stabilized, I wrote books about my journey and started working for the Schizophrenia Society of Alberta. The society has me give educational presentations to diverse groups and also employs me to work in peer support. There's something about help from someone who has been there and back with psychosis that is powerful. In caring for my clients, I find new reasons to keep going.

I also volunteer with an online support group for sufferers and their families. It has a strong focus on parents of people with schizophrenia who are not currently being treated. It makes me feel like a million bucks each time I see a person overcome something related to the illness that helps their loved one and to know that in some small way I contributed.

Giving educational presentations about mental illness and sharing my story with groups such as high school students, corporations, nonprofit companies, and even the Edmonton city police recruit class not only give my life purpose, they also keep me grounded and humble.

Just the other day, I gave a talk at a high school and a young person surprised me. On the evaluation forms we collect at the end of our presentations, the student shared they had experienced all the symptoms of schizophrenia and desperately wanted help. That reminded me there is still so much negative bias in our society preventing people from reaching out and that the battle to get people information and assistance is far from over.

Parents of people who have mental illnesses also live with unimaginable pain. Often, they end up being the only source of care for their adult children despite advancing age, poverty, their own health problems and even burnout. This burnout is often called caregiver stress syndrome and it can be extremely debilitating. But I often see people with mental illnesses who have at least one caregiver recover and do well. It is so much harder for the sufferer when they don't have anyone to depend on.

Psychosis is perhaps the worst part of mental illness, in my opinion. It can be present in schizophrenia, bipolar, depression, and can also be caused by chronic marijuana or meth amphetamine use, among other reasons. It is a difficult situation to recover from — but not impossible.

Psychosis can manifest as invasive, delusional thoughts that can be disturbing and denigrating. People with hallucinations imagine they are seeing, hearing, touching, tasting or smelling things that aren't actually there but seem real. They can reinforce the delusions. Paranoia often comes with delusions and hallucinations and reinforce the delusional ideas, often with constant, irrational fears. Those are just the positive symptoms — or behaviors that are added with the illness.

Psychosis also takes a lot of things away, which are considered negative symptoms, such as ambition, the ability to feel or express emotions and a social withdrawal. There's also anosognosia, a state where a person is ill but not aware of it. Watching a someone go through severe mental illness and experience the stigma surrounding mental illness is a nightmare.

An online group I attend supports mental illness sufferers and their caregivers. Jocelyn is the host who helps members learn about their loved ones' schizophrenia and other problems. At these meetings, the caregivers in the meeting have the chance to ask questions of other caregivers and the members of the advisory panel who have lived experience of mental illness.

There are caregivers and and family members with a variety of stories. Some have seen their children overcome their mental illnesses. It seems all of them would do anything for their children and are happy to offer advice or friendship to other caregivers. One woman has a son who is currently in a psychiatric hospital and using drugs that worsen his condition. Her son's doctor has said she must do the one thing she least wants: stop communicating with him or visiting until he complies with treatment. Sometimes solutions seem cruel, but they are necessary.

Once, I encouraged a mother to charge her son rent, but to save the money she collected from him on his behalf. She was grateful for my advice and now her son is much closer to independence. Often I suggest they read the book "I'm Not Sick, I Don't Need Help," by Xavier Amador. After helping his brother accept treatment and recover from schizophrenia, the author established a movement to help people care for their mentally ill loved ones. Sometimes my advice gets shot down, but giving up is not an option for these parents, and so it isn't for me either.

Never let the stress of helping a loved one make you angry, bitter or burned out. Self-care for caregivers is critical. Set firm boundaries. If your loved one doesn't accept treatment or acts out violently, draw the line. And, of course, don't go through this alone. A caregivers' support group can really help. Recently, by searching a few terms including the area and type of group, I helped one person from the online meeting who lives in New Mexico find a caregivers' support group near her home in minutes.

The earlier you can get someone with mental illnesses proper psychiatric treatment, the better. More people need to understand the signs and symptoms of mental illness and be comfortable talking to their family doctor about them. Caregivers can contact agencies such as the National Institute of Mental Health, the National Alliance on Mental Illness or the Comprehensive Understanding through Research and Education Into Schizophrenia Foundation to find out about the many resources and services available.

Sometimes when I am helping others to recover, I think about my parents and how proud they were to see me finally have a chance at a decent life. I worked, I traveled, I studied. I now see my illness as a gift, one which gives me the hard-earned skill to reach out to others who suffer and be able to truly help. Helping others also reminds me to always comply with my own treatment.

Leif Gregersen is a writer, teacher and public speaker with a passion for photography. He has written and published 12 books, three of which are about his mental health journey. He also keeps a blog with free content about mental health at edmontonwriter.com. Read More