Life Has Become Wonderful: My Life with Schizoaffective Disorder (PART 1 OF 2)

by Leif Gregersen

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​Five Times

I don’t like to think of myself as crazy or let people define me by my illness. I don’t even like popular words like insane or nuts, terms that have come to represent situations that have nothing to do with a human being who is suffering from mental health issues. “That restaurant was so busy last night it was crazy.” “I just picked up an insane deal on a new phone.” I even have misgivings about the word schizophrenia. I think the name schizophrenia should be changed as the term manic-depressive was changed, to bipolar disorder. The full name of my diagnosis is schizoaffective disorder with anxiety, and I like to stress that I am a person with schizoaffective disorder not a schizophrenic. Calling me a schizophrenic is like calling someone a cancer, or a heart disease. I find it dehumanizing.

What I know is that when I am on medications, getting enough rest and proper food, I am as stable and normal as anyone. In order to do that, I need to micro-manage my health, which has been possible but has taken far longer than it should have. I’m only fifty but I am experiencing issues like memory loss which could be linked to my medication.

To me, micro-managing my health means scrutinizing everything I consume, and also arming myself with knowledge about my medications, what I eat and drink and the vitamins I take, as well as the exercise I do. Managing my routine each day and for example not skipping a day of multivitamins or exercise keeps me on that invisible path of good health. I still have issues with my health, but I can proudly say I don’t notice my fifty years. I feel I can do just as much as I could twenty or thirty years ago. My opinion is that everyone should have the knowledge and support they need to bring focus to their health, whether they are mentally ill or not.

​There is much ignorance among the public regarding mental health. All too often the medical community simply reacts to health concerns, instead of putting effort into preventing them. As time marches on however, things are changing. School curriculums include courses like Career and Life Management where, among other essential life skills, high school students are taught about mental illness and how and where to find help for serious issues. An organization called Early Psychosis Intervention Clinic tries to reach young people with psychosis before they have to be taken from their home, school and community and treated in a hospital setting.

Efforts like this are very encouraging, but there are still many narrow-minded people out there. I am fortunate that my work is focused around my lived experience with mental illness. There are many people who have to hide mental health diagnoses from their employers and even friends. Still, ignorance and stigma affect me daily and I sometimes find it hard to reach out to people for fear they will judge me.

Some people believe that their mental health issues will ‘burn out’ as they age, but this is very rarely the case. What often happens is, a person experiences poor self-care and difficulty maintaining a healthy lifestyle. This is something bred into the mental health treatment system. I am a supporter of benefits for the disabled, but they come with a cost. More effort should be put into programs that keep people on benefits active and interacting with their peers. As it stands, far too many people isolate themselves and when on benefits, often the cheapest, not the healthiest foods are consumed. What ends up happening is people with mental illnesses end up having so many health issues that mental health is the least of their problems, not that the illness burns out.

In my own situation, living alone and not having much knowledge of nutrition, I went through a period of eating a great deal and another period of eating a lot of high fat, high calorie foods from hot dogs to potato chips that resulted in me being diagnosed with type two diabetes. Even after my diagnosis I found it very hard to do the right thing and eat the foods that were recommended to me. Living with depression caused me to not care about my health until I was faced with a life or death decision.

A critical factor that affects the well-being of every person with a mental health difficulty is often ignored. In one word, housing. The importance of housing is apparent in the downtown areas of most major cities. Here we see the results of people with mental health issues who have slipped through the cracks and have no place to go, nowhere to get warm or even use a bathroom. All too often they die on the streets in the cold or sadly take their own lives. Many others suffer alone and in silence in substandard housing as their lives pass them by. The question becomes, what can be done to help these people?

The answer is, in the case of the homeless, mentally ill and addicted, is that they must be taken to a treatment center, where any substance use issues can be dealt with. Then, once clean and sober, they have to go through treatment for their mental health issues, then supported with stable, long-term housing. No one agency can do all this. I myself have gone through renting temporary accommodation, even spending extended periods in homeless shelters. During a trip to the US as a teen, which I should have known I couldn’t afford, I was sleeping in truck stops and ditches for days.

Not long after returning from that trip, I thought I would go on drinking alcohol and going to nightclubs, but when faced with having to take medication that didn’t mix at all with alcohol, I needed to put an end to the partying. I had gone a long way down the path towards alcoholism and had a lot of difficulties coping with the huge lifestyle change until I finally went into regular treatment and counseling for an entire year. It seemed just as I managed to get my drinking under control, I started having problems with gambling compulsively, which brought on endless suffering in my life and a huge financial strain. I had to understand my patterns to treat them and I needed the proper support to do so.

All too often, mental health related problems are handed off to the police. In many cases, a homeless person, after several encounters with the police, are taken to jail for unpaid fines. The fines are levied for things like loitering, causing a nuisance or public urination. They are being told they can’t exist or perform basic bodily functions and then they are punished for them. This method of treating the mentally ill is reprehensible.

I struggled for a long time with my own mental illness. I had been in hospitals numerous times, but until I was put in a group home that was well funded and properly supervised, I saw little improvement. Being in a group home meant I got eight hours of sleep, three meals and a snack. I also got all of my medications at the times I was supposed to take them. I was able to experience a slow but steady improvement in my physical and mental health.

Later being asked to teach creative writing, wellness and recovery classes, I began to see that you really can’t judge people with mental illnesses. I saw it happening all the time, security guards in malls forcibly removing people who did no more wrong than having worn out old clothing. People laughing and joking about someone responding to voices in their head. If one good thing came from that, I learned to be patient to a flaw when working as an instructor.

Gradually, I worked my way out of the darkness. I found employment and trained myself to become a writer and public speaker as I worked. Eventually I did well enough that I became able to do the work I choose and to live on my own in a building with minimal support staff. Without the help and support from the people in the group home and the people who run my apartment building, my recovery would have ended two years ago when I had a bad reaction to a medication and ended up seriously ill.

I think the important thing to remember is that a person’s journey through mental illness to recovery can be a long one, and rarely does it go in a straight line. One of the tragedies is that sometimes being in the hospital can severely traumatize a person, even though they may be getting the medications they need. When you have a mental illness, it is so critical to have friends who are quick to listen and slow to judge and even a counselor you can talk to about feelings of low self-esteem or symptoms of your illness that medication either doesn’t or can’t deal with. Remember that a lot of people who suffer from mental illnesses eventually go back to working, find love and acceptance and end up at peace with their diagnosis, but it rarely happens overnight. It may even take years, but it is so worth the wait, so hang in there!

EDITOR IN CHIEF: Gabriel Nathan | ​EDITOR: Laura Farrell | DESIGN: Leah Alexandra Goldstein | PUBLISHER: Bud Clayman

See Related Recovery Stories: Anxiety, Depression, Mental Health Aloud, Mental Health First Person Essays, Schizoaffective Disorder, Schizophrenia