Life as a high functioning person with schizoaffective disorder
There are a few different ways to define what high functioning means for someone with schizophrenia – the ability to work full-time or function as a stay-at-home caregiver or as a full-time student, good interpersonal skills and relationships, and just generally being able to function in society the majority of the time. Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free.
There still may be symptoms
Residual symptoms are common in people with schizophrenia and schizoaffective disorder even with medication and can occur frequently. For me, this occurs as disorganized thoughts and cognitive issues pretty regularly. I’ll feel like my thoughts get mixed up; my mind can bounce from topic to topic with tenuous connections; and sometimes I struggle with translating the words in my head into speech. I get anxious in social situations because I’m afraid I’ll say the wrong thing or say something that doesn’t make sense and then people will think I’m weird and not want to be around me.
With the right amount of stress, I can also experience symptoms of depression as well as symptoms of psychosis like hallucinations. Right now, my stress level is high and I’ve been seeing people watching me from the corner of my eye, seeing the cat that has been a recurring hallucination of mine since the beginning, hearing footsteps, and I felt a dog boop me with it’s nose. In addition to any level of residual symptoms, there are also the weekly psychiatrist appointments, monthly trips to the pharmacy, handfuls of pills every day, and the bills that go along with all of it. My life is not like it was before the onset of my illness, and it never will be. In all honesty, there are times where I’ll feel bitter about it, but most of the time I’m just thankful that my treatment works as well as it does.
“But you look fine”
I am incredibly grateful for my ability to function highly, but it still comes with issues. I’ve found that, just like with many other chronic illnesses, people often don’t really understand that your life is different or that you may be struggling because, to them, you look perfectly fine. I’ve even been asked on multiple occasions what would happen if I stopped taking my medications because some people have a hard time believing I actually need them. There’s a lot of stigma attached to invisible illnesses, both physical and mental, because so many people don’t understand how much they actually affect daily life.
Functioning while symptomatic
When I’m not doing well and the more severe symptoms become frequent, my needs change. I often don’t want to be alone during those times. When I am alone, I’ll keep lights on, music playing, and utilize my service dog’s tasks to help me feel at ease. I can become more sensitive, and little things might make me cry. Life becomes exhausting. It can take all of my energy just to get through the day because I’m fighting to complete daily tasks despite my triggered emotions, disorganized thoughts, and hallucinations. Communication can feel draining as well; even just answering a text feels like a momentous effort. But to others, it may look like I’m being overdramatic, lazy, or antisocial.
While most people have been happy to accommodate my needs when I’m struggling, sometimes it’s still hard for them to understand. It doesn’t always mean they don’t care, they just may not know how to help when you don’t necessarily look like you need help. I’ve found that vocalizing what I’m going through can help, but that can be difficult too. It can be embarrassing or feel like you’re letting someone down when you tell them that, despite how it looks, things aren’t okay right now. It can even feel like it’s your fault when that isn’t the case at all. People don’t choose to be mentally ill. Nor do they choose the things that trigger their symptoms.
The take away
If you have a chronic illness like schizophrenia, keep up with your treatment and try to let your loved ones know about what’s happening in your life, as scary as that may seem. They might not always know how to help, but they may not know that you need support unless you tell them. Do your best to take care of yourself, but understand that it’s okay if you need a higher level of care. Taking leave or being hospitalized does not mean you will never function highly again. And it does not negate the time that you’ve been high functioning. Take it day by day. You can get through this, and it might be easier with the support of your loved ones.
For those with loved ones with schizophrenia, remember that just because you don’t see the suffering doesn’t mean it’s not there. If you know someone is experiencing symptoms, try to be sensitive to the fact that, while they continue to carry on in daily life, their needs may be different right now. And understand that your loved one may still need support even when the symptoms aren’t active. But most importantly listen. Don’t just brush it off because your loved one looks fine. Truly listen. While being high functioning with schizophrenia can be a huge achievement, it’s not always rainbows and sunshine. But it’s always worth fighting for, and it’s hard to fight alone.
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