What is it actually like to live with schizophrenia?
LK: Schizophrenia and schizoaffective disorder can include what are called positive and negative symptoms. Positive symptoms are things like hallucinations, delusions, and paranoia; negative symptoms are things like reduced energy, blunted affect, lowered motivation, etc. Medications help me manage my symptoms—with proper treatment, many people living with schizophrenia appear to be completely healthy. No one in my life knew I had schizophrenia until I told them. But it’s still a challenge. Even with medication, my symptoms make it more difficult to find a balance in life. I’m learning to understand that it might take longer to do things or that I might need additional support sometimes, and that’s OK.
Asking for and accepting support from friends has also been pivotal in my life. My partner also provides a lot of support, which I really appreciate. We try to maintain open communication around everything, including my illness. That said, we also make a point of ensuring that my illness does not become a focal point of our relationship—there is so much more to our relationship and to me than just the fact that I have schizoaffective disorder.
How do you manage your schizophrenia?
LK: Many people believe that schizophrenia can’t be treated and that institutionalization is the only solution. While it’s true that it can’t be cured at this time, it can be treated effectively. A really important thing I do to manage my mental illness is to ensure I am taking my medications regularly. I struggle with this quite a bit, so I use strategies to help me stay on track, like setting an alarm on my phone and having a poster on display with reminders about why it’s important to take my medications.
Ensuring I am getting adequate sleep is also one of the most important things I do to manage my mental illness. When I’m struggling with my sleep, it can really affect my mental health and some of my symptoms can become more pronounced. On a similar note, I exercise: Physical exercise is a really grounding thing in my life, and it also helps to deal with different stressors I may be experiencing. I really enjoy running—I run ultramarathons—and playing soccer, and I just recently got back into swimming.
Victoria Emanuela, 29, and Caitie Metz, 30, founders of On Being in Your Body
Glamour: What do you want people to know about PTSD that’s usually misunderstood?
Victoria Emanuela: I’ve been in various types of therapy for over a decade, and despite that and the work I’ve done independently to stay afloat, many people assume I should be healed by now (*internally screams*). It makes it so that whenever I’m drowning or experiencing a state of regression, I feel ashamed asking for help or letting others bear witness to my mess. The thing with complex PTSD is that it’s…complex. When you’ve had a nightmare of a childhood, it can take decades or close to a lifetime to live symptom-free. I want people to know that healing is nonlinear and setbacks are inevitable, even necessary! Sometimes you need to take three steps back in order to move 10 steps forward.
Caitie Metz: The largest misconception I’ve come up against about complex PTSD is that people think I don’t love or care for them. They think that I’m apathetic, forgetful, or lazy about our relationship. I wish people knew how often I stare at my phone, wishing my finger remembered how to call them, or wishing I knew how to answer their texts. I wish they knew that, when I’m in crisis mode, I get tunnel vision, and all I can focus on is surviving. I’m constantly running triage, assessing threats, and figuring out how to neutralize and calm the emotional debris catapulting around me. I wish they knew how afraid I am that I’ll hurt them. I’m so grateful to the people I can wave a flag at and say, “Hey, I’m going through a thing, see ya in a few days or weeks,” and they’ll still be there when I resurface. I’m in awe of my core babes who hold me accountable while extending grace.