I Live With Schizophrenia, and People Tell Me I'm an Inspiration — but It's a Full-Time Job Managing My Illness
“You give me hope! You are such an inspiration!” These are the types of comments I receive every time I write a positive article about living with chronic paranoid schizophrenia. I read those two sentences frequently, especially from parents with children who have schizophrenia. Although I always try to present my brain illness in the best light possible, I do so to combat stigma, misunderstandings, and the harmful stereotypes that have come out of Hollywood for generations.
The truth about living a fulfilling life with a diagnosis like mine is that it looks much different than many can imagine. It isn’t just about taking medications as prescribed (although that is huge); it is a full-time job trying to keep my symptoms from landing me in the hospital.
If I don't spend the time managing my symptoms, it can lead to psychosis. Psychosis, for me, can involve all or some of these symptoms: hearing voices, olfactory and tactile hallucinations, intense paranoia that may lead to not eating due to a fear of being drugged or poisoned, a belief in delusions, conspiracy theories, and the inability to sleep.
I assume anyone with a chronic illness will relate to what my spouse and I do to try to keep me away from hospitals. One of us, either my husband or me, will prepare my breakfast each night before going to bed so that I can take my medication as soon as I wake up in the morning with the recommended three hundred calories. I make a note of the time that I take my pills because I need to take them again as close to twelve hours after my morning dose as possible. That means that the time I eat dinner (another minimum of three hundred calories) will be determined each morning. Being so strict about food makes going out with friends and enjoying a meal almost impossible. I almost always eat dinner before meeting friends and drink ice water while everyone else is eating and drinking. (My doctor says, “No alcohol,” and I comply.)
The side effects of antipsychotic medication are numerous, like significant weight gain — some people gain up to fifty pounds in short periods — high cholesterol, high blood sugar, and other disease-causing changes to the body. Some of these side effects can be reduced by diet and exercise, so I make sure that I walk at least 30 to 40 minutes a day. I'm also very strict about my fruit and vegetable intake, and I make sure that I eat at least five to six servings every day. (This is harder than it may sound.)
I keep a regular sleep schedule. I go to bed at ten o’clock every night and wake up at 6:30 a.m. About one hour after taking my morning medications, I am exhausted and can’t keep my eyes open. On most days, I take a nap that lasts from a half-hour to an hour. All of this, combined with regular doctor’s appointments and lab work, mean that we frame our lives around my health and the desire to keep me with as few symptoms as possible.
When we get invited to a wedding out of town, or my husband has a business trip that I can accompany him on, we do what I call, “radical planning.” We can’t take the cheapest flights at the earliest hours of the morning, because we know from experience if I wake up and have to start something stressful like travel, I'll have a panic attack that will make traveling that much harder. We have to take mid-morning or afternoon flights so I can go slow and easy.
We pack lots of snacks: sliced apples, cheese sticks, crackers, carrots, green beans, and other fruits and vegetables that travel well. We've learned from experience to have plenty of food available while I travel because it reduces the likelihood of anxiousness, and it helps keep my blood sugar stable. We choose an aisle seat for me because my medication gives me dry mouth, and I need to sip on water constantly, requiring frequent trips to the bathroom.
I assume parents with a child who has special needs, or anyone living with a chronic health condition, frame their lives like we do. Some might even call it self-care, but it isn’t the kind of self-care that can be called a luxury. It's a necessity for avoiding more treatments, more doctor visits, and possibly hospitalization.
It always feels nice to receive positive letters from people, but outcomes for those with schizophrenia vary widely. I wouldn’t stand a chance of living a rewarding life if I didn’t have good healthcare, and many people don’t. I also have doctors that are proactive and take my symptoms and overall health seriously.
Almost as important is the fact that I have a partner who helps me manage every aspect of my illness, from food intake to sleep to stress levels. I made a commitment when I got married to make my health a priority so that as a couple we could live a good life together. We haven’t been able to avoid episodes and symptoms entirely, but we do the best we can. It's is all this effort that I want to honestly portray to people when they tell me I am an inspiration, because looking from the outside it might look effortless — but that is an illusion, it takes more effort than I have given any other situation in my life.
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