Schizophrenia and Schizoaffective Disorder Q&A
A collection of questions people have asked Katie. All questions are answered by Katie, a person living with schizoaffective disorder who has an educational background focused on clinical psychology and past experience working in schizophrenia research.
Have a question you would like answered? Email it to katie@katiesanford.net
SYMPTOMS
Q: Can you please try to explain hallucinations both auditory and visual? I struggle to understand/imagine what it is like to have them.
A: For me and others whom I know, auditory hallucinations sound just as real as anything else. When I experience them, the only reason I know that they’re not real is because I can’t find a source for them (e.g. people calling my name when no one actually is) or because they are out of place (e.g. 1940’s-style music coming from an empty grove.) When it comes to voices, they can sound as if they are outside of you like any other sound, or they can sound more like they’re inside your head, like the voice you think in. When it comes to visual hallucinations, they can either look entirely real, or they may look a bit hazy. Many of my visual hallucinations are hazy, which makes them significantly easier to discern from reality, however, they can still be incredibly frightening and unsettling because at least part of your brain is insisting that this is real. There is also often an intense emotional response triggered as well. The things that I see appear in ways that are realistic, and by that I mean that people who I hallucinate stand on the ground and do not float in the air or appear upside down, though that is just my personal experience, others may have hallucinations that are different.
For more on hallucinations, you can check out my posts Auditory Hallucinations – A Closer Look and Visual Hallucinations – A Closer Look
Q: Is it unnerving to have hallucinations, or are you more “used” to them now?
A: Some of my hallucinations are very unnerving, like hearing or seeing people peering into my windows, but some aren’t, like the cat who has been a recurring hallucination from the very beginning; she’s been very comforting. And some, like hearing music, don’t bother me beyond the fact that I know I’m not doing well if it’s happening. When they happen frequently over a long period of time, I do get somewhat used to them, like the people I’ve seen watching me while I’m at my desk in a non-threatening way. They mostly just startle me at this point.
Q: How long do hallucinations occur?
A: My hallucinations can be fleeting, like seeing someone out of the corner of my eye, but some, like people following me or walking around me while I’m working, can last a lot longer.
Q: If you close your eyes, are they still there in the same way?
A: Sometimes they go away if I close my eyes, but sometimes they don’t.
Q: How do you cope with hallucinations when they happen?
A: I use music to drown out auditory hallucinations, but visual are tougher. Mostly, I try to remind myself that they aren’t real, but that’s not really much comfort most of the time. If I’m up for it, I’ll try to prove to myself it wasn’t real, by searching for the source of the sound or sight. It can be terrifying sometimes, creeping up on a corner when you hear someone on the other side, but proving that there is no source helps make me feel safer and also I just like knowing. Knowledge brings me comfort and helps me to know what to discuss with my doctor.
Q: Do you get some kind of physical cue that hallucinations are about to happen?
A: I don’t get a physical cue, but I can anticipate emotional triggers sometimes, but I don’t really get any clues; they often come out of nowhere. Occasionally I’ll feel drawn to look in a certain direction, but that’s unusual.
Q: Do hallucinations happen more when you’re generally more stressed?
A: Definitely. I have residual disorganized symptoms pretty frequently, but hallucinations don’t usually pop up unless my stress level is high for an extended period of time.
TREATMENT
Q: What would happen if you stopped taking your medication?
A: I currently take antipsychotics, mood stabilizers, and antidepressants daily. If I were to stop taking them, the first thing that would happen is that I would become physically ill – vomiting, diarrhea, and other withdrawal symptoms. Psychiatric symptoms would not start to appear until a later point. I have never gone off of any medications without doctor assistance to move onto a different medication, so I couldn’t say for sure what the symptoms would be like, but from what I understand from others, the symptoms reappear slowly, but continue to progress strongly.
Q: How do you deal with side effects of medication?
A: During my time taking psychiatric medication, I’ve experienced many different side effects. Some of them, like the fine tremor in my hands and the insatiable inner restlessness of akathisia, were resolved by taking a different medication. Some can take some work, like weight gain. Many antipsychotics can cause weight gain and make it very difficult to lose that weight. Having been skinny all my life, this was a tough one for me. It didn’t matter how much I exercised, I couldn’t lose the weight. To resolve that, I switched to a different antipsychotic that’s weight neutral. I had to work very hard to lose the weight, but I was able to. With side effects like dry mouth and some impairment with my fine motor skills and dexterity, I’ve just kind of had to learn to live with them.
Q: How long did it take you to stabilize on medication?
A: It’s different for everybody and there are a lot of factors involved. I was treated, quite literally, right when the psychosis started because I was already seeing someone about depression. That was July/August. I was always functional, but I don’t think I felt stabilized until the end of the school year, so around May or June. But it took years to get the medication right, which wasn’t helped by seeing a psychiatrist who tried to give me a different diagnosis and took away a medication that it turns out I actually needed.
LOVED ONES
Q: For parents/loved ones who find out their child/loved one has been struggling for years with serious and sometimes life threatening torments, there is the relentless question of what they could have done/seen to know what was happening and help/intervene sooner? Or is it the case that, until your loved one is ready for help they won’t let you see or do anything? Is there a realistic, practical way parents and loved ones can help before someone suffering is ready to ask for help?
A: This is an issue that I believe many parents and loved ones go through. I can only speak to my own experience.
I did not accept that there was something wrong for most of my life. I knew what depression involved and I also knew that I felt and did all of those things, but I would tell myself over and over that this wasn’t depression and I was fine, that I was blowing things out of proportion and couldn’t possibly have depression because other people had it worse off than I did. The depression made me think that, despite my family being loving and open, I couldn’t tell them because they wouldn’t care or they would be critical of me for it. I don’t think there is anything anyone could have done to convince me that I needed help. I felt like I didn’t deserve help. And I think if a friend or family member approached me about it, I would have denied being suicidal, hurting myself, or feeling worthless and alone. When I did ask for help finally, the only reason I asked was because I was nearing being unable to function.
My advice to parents and loved ones is to be there and be supportive. Open the door to conversations about mental health. On the day that I asked my mom if I could see a therapist, I knew that it would be met with love and support. I wish I could say there is always something you can do to intervene, but, in many cases, the best thing you can do is create an environment of love and support so that, when your loved one is ready, they feel comfortable asking.
Please note, I am not and do not intend to present myself as a clinician, researcher, or other health care professional. My level of expertise involves only personal experience paired with an education and work experience focused on schizophrenia and schizoaffective disorder. None of this is to be taken as medical, psychiatric, or therapeutic advice.