Do you have a friend or family member with a diagnosis of schizoaffective disorder? To begin, I want to explain what schizoaffective disorder is. Schizoaffective disorder is a rare combination of bipolar and schizophrenia. Schizophrenia is an often-misunderstood illness where a person experiences a split from reality, not someone who experiences a split personality, which is known as dissociative identity disorder, or DID. It is important to understand that violence is not a symptom of schizophrenia, regardless of how TV and other media portray it. In fact, people with schizophrenia are more likely to be victims of violence than perpetrators. Schizophrenia is characterized by the presence of psychosis. Psychosis has four main parts to it, including:
1) Delusions, which are thoughts in their head that are false, sometimes grandiose, or persecutory.
2) Hallucinations, which are false sensory inputs affecting any of the five senses. Hallucinations often reinforce delusions, making it very difficult for the person to understand what is real and what isn’t.
3) Paranoia. This is a false fear that others want to harm the person with psychosis
4) A general susceptibility to believe these false thoughts and ideas.
Psychosis can occur in people with schizophrenia and in other situations such as drug-induced psychosis or along with bipolar disorder. Bipolar disorder can take on many forms, including periods of deep sadness and times of elation and high energy. The person can go for weeks or months without having the strength to get out of bed or off the couch and then go through a phase where they are going a mile a minute, talking fast, and doing such things as spending all their money. For me, I would spend most of my time sunk into a deep depression, and then I would have a few drinks at a party, and I would slip into a manic phase. This illness drove a lot of people away from me.
Understanding these symptoms is part of being a support to people with schizoaffective disorder, but there are seven things you can do to make their life easier.
1. Simply listen to the person with schizoaffective disorder.
This may be hard at times because they can be in a manic phase and seem very animated, talking about their grandiose ideas. They could also be in psychosis and paranoia. Let them know that it is OK to have thoughts that diverge from the norm. Encourage them to talk to their psychiatrist or get other kinds of professional help. It is important when talking to them to understand that you can’t talk them out of even the wildest ideas. What they are experiencing is very real to them, and so are the fears and sometimes anger that go with it.
2. Know how to support the person with schizoaffective disorder when they need help.
If your loved one with schizoaffective disorder has deviated greatly from their normal thoughts and emotions and doesn’t want to talk to their psychiatrist, it may be important to contact an agency that can help.
For younger people, there are agencies here in Canada called Early Psychosis Intervention Clinics that can do a lot to try and avoid having to send a young person to a hospital. For people who are older and may have a history of being in a hospital, try to avoid calling the police. Instead, find out if there is a crisis response team in your area that can approach them, assess them, talk to them, and get them help without acting as an authority figure. It can be stressful and even dangerous to send the police or emergency services to deal with someone during psychosis, but if there are no other options and the person is at risk of harming themselves, it may be the only way to get them help. If you can go to the person at their home or wherever they are, and act as an advocate, explaining to the police or paramedics that they are normally kind, caring people and be there to help the person through the process, possibly even riding with them in an ambulance to get help, it could make a huge difference.
3. Look into local agencies that are set up to help people with schizophrenia and bipolar disorder.
Where I live, there is an organization called The Schizophrenia Society and they have support groups and wellness classes for people with psychosis as well as a peer support program. They also have family resources such as guest speaker nights where a psychologist or psychiatrist will come in to talk about therapy or medications, and even practical matters like setting up a trust for a person who can't support themselves and would be in a dire situation when their parents pass on. My parents found a class put on by our health care system in Alberta which lasted for 10 weeks and taught my mom, dad, and me a great deal about mental health.
It is important to educate the person and educate their family members. Some family members may be reluctant to go to educational or support groups, but part of helping the person with the illness comes down to being OK with an illness in the family or among friends. When you get on a plane, the flight attendant always says that in the event of loss of cabin pressure, if you need to put an oxygen mask on someone, it is important to put your own mask on first, so you can help them. It is the same when helping a person with a mental illness. You need to be well-armed with knowledge and be mentally healthy to help the person who has schizoaffective disorder, and attending family and friend education classes can make a huge difference.
4. Encourage the person with schizoaffective disorder to reach out and make friends among others who have mental illnesses, and to maintain friendships from the past.
Nothing gets a person through a tough time better than having someone to talk to. If the person with the illness has only a few friends, or just you to rely on, they run the risk of asking more from that person than they are able to give them in the way of time and energy. If they have several friends they can talk to and do things with, they can spend a little time with each of them and not put too much stress on anyone. It is also important to make friends with others who have the illness. These can be people they knew in the hospital or from support groups or wellness classes. Encourage them to reach out. One of the greatest things about having a friend who has a similar illness is, they won’t judge you or look down on you because of your illness, they understand where you are coming from and how they can help.
5. Support your family member or friend with schizoaffective disorder in their efforts to keep a healthy diet and exercise.
Mental and physical health go hand in hand. I had a doctor who kept after me to quit smoking. He used to say that he can’t help me with my illness if I die from smoking too many cigarettes. Eventually, I quit, and I still count it as the best thing I have ever done.
Early on in my illness, my sister wanted me to eat healthier and she started with something simple: “please just eat one fruit a day.” I took her advice to heart and later started making fruit smoothies with a blender. It became my favorite meal to mix blueberries, strawberries, bananas, and anything else fresh and healthy I could into a drink.
My dad helped in the exercise department. He would drive to where I lived every day and would take me for a long walk in one of the parks in the river valley that snakes through Edmonton. I built my way up to walking longer and longer distances, and at one point I could walk for almost two hours, then swim for an hour and walk back two hours. I never felt better in my life, before or after my illness. Mind you, I did realize that I was doing a little too much, so I started just walking 3-5 miles, doing a little shopping, and then taking the bus home.
To make my exercise hobby even better, I bought a phone with a high-resolution camera on it and took pictures of sunrises, buildings, fancy cars, squirrels, and anything I found interesting. I put the pictures on Instagram and Facebook, and it was very rewarding, especially when I would sometimes sell photos or get hired to use my regular camera to photograph events.
6. Once they have built up friends, exercise, good eating, and are on top of things a little more, encourage your friend or relative with schizoaffective disorder to find a volunteer position or paying job.
I have always been interested in history and I never really had a grandfather. I decided to volunteer at a Veteran’s Hospital for World War II Veterans. I was given a list of people to visit and would read to them, play cards with them, and take them for walks. I got to really love the men I worked with and felt extremely fulfilled.
Not long after, I was used to getting up and taking the bus across the city and so I put in an application for a job as a security guard and I got it. It was difficult at first, and I don’t suggest anyone with a mental health issue work nights, but having some income and the self-respect that comes with a job really made a difference in my life.
Just a few months before getting that job, I really had thought my life was over, that I would be in a group home with very little money for the rest of my life. After getting the job I was able to save up and first took a trip across the country to see my sister, then took another trip to the West Coast and explored Vancouver and Victoria, British Columbia, two of the most beautiful cities in Canada. Having those amazing experiences gave me a reason to keep working and I kept taking trips, getting to Hawaii twice and to London, England.
7. Recognize that someone with schizoaffective disorder can still accomplish great things.
Perhaps the most important piece of advice I ever got was from a young woman I met at a party. She was very intelligent and was studying social work. I asked her what she felt was the most important thing for someone with mental health difficulties to consider and she said without hesitating, “Don’t use your illness as an excuse.” This seemed harsh at first, but after thinking about it, I realized that there really wasn’t much I couldn’t do in this world that someone without an illness could do.
I went on to write 12 books, three of which are memoirs of my lived experience with mental illness, I had a dream job working not only in theatre and movies, but also in setting up stages for all kinds of major concerts. I made a lot of money and did so many things. I didn’t tell anyone at work about my illness, but some of them knew there was something off about me and would needle me about it. I simply kept on proving that I could work as hard if not harder than anyone and eventually most of these people became friends.
I have heard of people who lived with schizophrenia who became psychiatrists. I may not have that level of success, but I am now teaching creative writing in the same hospital where I was once a patient. One of the ways I put my social work friend's words into action was to write out two lists on a piece of paper. On the left side, I wrote down all the things I could do with my illness. I could write a book, I could travel, I could learn about all my favorite things in the library in my free time, and I could even go to university, to audit a class if I didn’t feel I was ready to take on assignments and take all those notes I had to memorize. Then I wrote down what I couldn’t do on the right side of the page. I had to include some things that I had really hoped I could do when I was younger, like being a pilot or joining the military. When I was done, I ripped the page down the middle, posted the paper from the left side on my bulletin board and tore up and tossed out the list on the right. And I haven’t looked back since.
Schizoaffective disorder is a very difficult thing to adjust to. But it is so important to support those who have it and for them to never give up the fight to live as good a life as possible with the illness. There is a lot of hope out there for people with schizoaffective disorder. When I was first diagnosed, I had severe problems with depression, but then a miracle drug called Prozac changed all that. Another thing that was difficult early in my diagnosis was that some of the drugs that were used to treat the illness were very strong and caused me to sleep all the time. As time went on, new drugs were developed. I even went on a new drug for my bipolar symptoms called Depakote which had far fewer negative side effects than the mood stabilizer I was first on called Lithium. Another thing that is important to understand is that when you have been on medication for a while, your body adapts to it and you learn new ways of coping with side effects.
Encourage the person to stick with their appointments, stick with their doctors, and never change or discontinue medications without express permission from a psychiatrist. In one of my worst times, I was waiting to adjust to a medication that made me incredibly restless. All I could do was sit for a few minutes, so I would read a short story from a book that was given to me, then I would pace. I still remember some of the stories in that lovely book, and adapting to my circumstances did get me through to a time when I felt much better.
If I could sum up how a person could best support someone with schizoaffective disorder, it would simply be to be the kind of friend you yourself would most like to have.
Photo by Tim via Pexels.
Leif Gregersen is an author of fiction and non-fiction, and has published 12 books, of which 4 are poetry collections, 3 are short story collections, 2 are short novels, and 2 are memoirs of his life experience with mental illness.