Boredom – it’s been a continuing struggle since I've started dealing with the effects of schizophrenia and then with schizoaffective disorder. After all, let’s face it, everyday life is not as exciting as a schizoaffective psychotic episode or even a manic episode. That’s not to say I would rather be experiencing acute schizophrenic symptoms than remaining successfully in treatment. I just mean that when you’re on medication for schizophrenia or schizoaffective disorder that is sedating, there are so many stressful activities I can’t handle and life can become a little boring due to the effects of schizoaffective disorder.
Living with Schizophrenia
Schizophrenia can make life unpredictable in that you never know what side of the bed you’re going to get up on, so to speak. With schizophrenia and schizoaffective disorder, you have good days and bad days. Today got off to a rocky start thanks to the unpredictability of living with schizophrenia.
A lot of people with schizophrenia, schizoaffective disorder, and other mental illnesses complain that they don’t like to shower when they're sick. I don’t either—I prefer baths. In my humble opinion, a good hot bath is so much better than a shower, whether or not you have schizophrenia or schizoaffective disorder. Here’s why.
Like a lot of people with schizophrenia or schizoaffective disorder, I make use of the mental illness disability benefit. And I’m really scared of Donald Trump’s proposed budget, which seeks to cut funding for those who are on social security due to a disability. With all his proposed policies, I can find no other conclusion than that Donald Trump wants to punish people for being sick. But it’s not just him. When it comes to mental illnesses such as schizophrenia or schizoaffective disorder, a lot of people don’t understand why someone wouldn’t be able to work. People don't understand why those with mental illness would need the disability benefit.
With schizophrenia or schizoaffective disorder, you can experience the "summer blues." Schizoaffective disorder is a combination of schizophrenia and bipolar disorder. I have schizoaffective disorder, bipolar type. For me, that means I’ve had a schizophrenic psychotic episode in which I thought I was being stalked by famous people, the Italian mafia, and the Federal Bureau of Investigation (FBI). It means that I hear voices. And it means that I have bipolar mood swings, from manic highs to depressive lows. I usually tend to veer to the side of depression. I am a bit of a connoisseur of depression. I’ve experienced different flavors of depression before and after my diagnoses of schizophrenia and then schizoaffective disorder. One of those flavors is the summer blues with my schizoaffective disorder.
Hearing voices might be the most stigmatized symptom of schizophrenia or schizoaffective disorder. When people hear about it, they imagine “what the voices tell you to do,” and even go as far as assuming that the voices command those of us hearing them to kill people. Just for the record: my voices don’t tell me to do anything, and even if they did I wouldn’t comply because I know they’re not real. Getting the message that the stigma of hearing voices is unnecessary across to people is probably one of the most important things I can do.
Because I'm 38, I'm starting to wonder if my schizoaffective disorder has held me back. Of course, you don’t have to have schizophrenia or schizoaffective disorder to get anxious around midlife. When my mom, who doesn’t have schizophrenia or schizoaffective disorder, turned 40, my little brother cheerfully quipped, “Hey, Mom. Now you’re half dead.” She laughed, but I imagine the words must have stung a little bit. However, for someone with a mental illness, evaluating your life at midlife means wondering how much—and if at all—your schizophrenia or schizoaffective disorder has held you back.
Traveling with schizophrenia or schizoaffective disorder can make vacations tricky. If your schizoaffective symptoms flare up over the vacation, you can’t help but feel disappointed—and disoriented. You know you can’t take a vacation from yourself (or your disorder). And, even if the vacation goes well, then you might feel depressed when you get home and it’s all over. This is how recent traveling affected my schizoaffective disorder.
Sometimes people don't work because of schizoaffective disorder or schizophrenia. When you consider that we currently live in a political climate in which the government seems determined to slash Social Security and mental healthcare coverage, the challenges of working with a mental illness become even more alarming. I am very privileged in that even though I'm not working because of schizoaffective disorder, my support network allows me to live a normal life.
I have mourned who I was before mental illness. When I was 19 years old and a student at The Rhode Island School of Design (RISD), a psychiatrist delivered my diagnosis of schizophrenia. Four years later, when I was back in my hometown of Chicago and had just started earning my master’s degree, I was re-diagnosed with schizoaffective disorder, bipolar type. Here’s how my life changed when I was diagnosed with schizophrenia, and later schizoaffective disorder and why I mourn who I was before mental illness.