Making Peace With Your Diagnosis

  • A short note before I begin: in this entry I use the term SZ as shorthand for the full name of the condition. I will say someone, “lives with schizophrenia,” and describe people as “having SZ,” not being “schizophrenic.” This is a distinction I make, even though most journalists rely on the least amount of words to fit the space (hence the expression, “all the news that fits, gets printed”). I believe that it is sloppy editing to subscribe to the person-as-illness shortcut that a lot of newspapers and magazines use.

    That said, I’d like to begin a dialogue about one of the trickiest aspects of living with schizophrenia. The reality is that our lives are changed forever after we’re given the diagnosis. A friend, “Ellen,” was the most realistic: she knew she was not the same self she was before she got sick, so Ellen shifted her goals and went back to school for a new career.
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    Above all, we need to distinguish what is within our control and what isn’t. In the beginning, we need to set modest, realistic goals, not adventurous or risky ones, and revise them or make them more challenging as we gain experience in our recovery.

    It's been hard for me to talk with mothers or fathers whose son or daughter seems to not live up to his or her potential after the illness sets in. I've been at a loss as to what to say; however, I'm going to tackle the subject, because I do believe everyone involved can have a better quality of life, even after the diagnosis is given.

    I'm almost a contrarian about it, but I don't think any adult child who has SZ should live with his or her parents. A group home where this person can live in and be treated with dignity and get attention to his or her medical needs, could be a better option.

    My contention is one I haven't seen expressed before. It is this: we talk of one being sick or well, and that doesn't help promote recovery, because everyone involved in the SZ, whether affected by it or living with someone who has it, has the potential to grow and change. One day in time, a week, a month or a year or two, does not make a lifetime; it’s a snapshot of what’s happening right now.

    My friend Kurt suggested that some people think recovery is a chore. How does this idea get planted in their heads? Living with SZ isn’t a difficult option to pursue if we focus on who we are, what our needs are, and how we want to live our lives. When first starting out, we need to do the simple things to help ourselves get better, and not get overwhelmed by pie-in-the-sky expectations. Just do what you need to do to stay afloat, and as you progress, dream bigger. Remember always to break your goals down into smaller, more manageable parts.

    Everyone has this choice, even if he or she is gripped by agnosognosia. We mustn't confuse the symptoms, which are not under our control, with our behaviors, which are under our control. Unfortunately, for some caregivers, it seems like their loved one is so far gone, his or her symptoms cause the very behaviors that are destructive.

  • It's a fine line. What's the solution? How can we tell whether a behavior is willful, or simply part of the illness? I think a caregiver knows. And when it gets too much to bear, I really do believe you have to trust your loved one to the staff of a residence, halfway house, apartment program or group home.
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    Okay, here's the truth: I had a B.A. in English, and had just graduated from the University when I got sick. I could've stayed at home, and really I wasn't any trouble to my parents, but a year later I moved into a halfway house, and worked my way up to the highest level of supported living in a housing project. That was actually a step up: living in a housing project!

    It's also a fine line between giving up on someone and accepting that his or her life has changed dramatically after the SZ set in. Always stay hopeful. To accept that you or your loved one has schizophrenia is the first step toward dealing with your life circumstance at this moment in time. Accepting that you have an illness, or that someone you love does, doesn't mean you have to like having it, but this self-acceptance leads to awareness about what you have to do to cope successfully and live well in recovery.

    Life isn't fair. Schizophrenia shoots dirty pool. We need to fight back with everything we've got. The illness doesn't fight fair, and neither should we.

    A friend told me that the SZ was my cross to bear in this lifetime. I gladly accept this cross. I don't ask God, "Why?" I ask Him, "What can I do?" Jesus was the most famous person to bear a cross, and he knew what he was up against. I'm not sure this answers the question as to what I can tell loved ones whose son or daughter is on the more troubled side of the spectrum of how the SZ affects him or her.

    All I know is that life isn't fair, but it is good. That's the great irreconcilable truth. In my recovery, I've had to change my perceptions to free myself from misery thinking, and that opened a window. My great hope when I graduated college was to become a magazine editor, and then I got sick. When I found my first job, my goal was to rise up in the business world, and that didn't happen either. After I relapsed, I endured failure after failure until I found the job I love and started to have a freelance writing career focused on mental health.

    So keep the faith. Stay hopeful. You're not alone in what you're going through. I can't save you or rescue your loved one, but I can show you a different way of looking at how to live in recovery.
Published On: January 19, 2007