I don’t often share personal stuff out there but I wanted to talk a little about mental health today. I am diagnosed with schizophrenia, ADHD, and CPTSD. Currently medication is working well for me, but I spent 11 years where I was considered treatment resistant and I couldn’t work or drive and going out in public was very hard because I thought strangers could read my mind and I’d get very angry about it and make a scene. I mean who would want that level of privacy invasion? My husband was essentially my caretaker and I am grateful he stuck it out with me for so many years. I am just glad that my stability allows him to just be a husband again.
Somehow, in the midst of all my symptoms, I managed to get my masters in fine arts (I am grateful the university made so many accomodations for me). I nearly cried at graduation because it was such a struggle to get to that point. It took me 10 years to finish college. My suggestion to all those who struggle with mental health is to take advantage of disability services and counselors at the University. Don’t be hesitant or think you aren’t sick enough for it. They are there for people like you and they want to help you. My school also had a learning center where someone worked with me to handle the ADHD. She’d write out schedules for me to follow and helped me write my essays etc…
Now a little about meds. I’ve taken dozens over the years. Antipsychotics are notorious for weight gain and let me tell you, losing weight while on them is REALLY hard (I have been on seroquel, risperdal, zyprexa and clozapine all of which affected my size). I was on the highest dose of everything I took over the years so the effects were intense. I read once that seroquel, which I took 800mg of, makes the curtains look delicious. I managed to get through the first year of my weight loss journey while taking Zyprexa, though, which is the worst of all psych drugs for weight gain (some people can gain up to 100 pounds on it and for me it was 50 pounds). It also affects how you process carbs and makes it very hard to lose weight unless you eat super low carb all the time. I did that for about a year and lost my first 30 pounds. When I was finally taken off Zyprexa and put on Latuda (which blessedly doesn’t have weight gain as a side effect), weight loss was a lot faster and easier. But it’s not impossible on these kinds of drugs because I did manage to lose with a lot of effort. You have to be so vigilant because lapsing for just a week can pack on 7 or 8 pounds easily and shedding that again takes three times as long. I gained 50 pounds in three months time and it took me over a year to lose just 30 of that.
You do face a lot of stigma with psychotic disorders because people think schizophrenia means the end of life as you know it. We are condemned to wander the streets waving our arms and talking to the air. My life did come to a stop when I became ill, but I did finally find treatment that was effective and here I am 3 years later stable as a table. I would never tell anyone in an ER I have it though. I’d say bipolar instead because ER staff often assume with schizophrenia that all your complaints are psychosomatic and that you must be psychotic and are making shit up. It also doesn’t help that when there is a violent event that gains a lot of media attention. Schizophrenia is often blamed and people have a wrongful assumption that we all have violent tendencies. It’s much more likely for someone with mental illness to be a victim and not a perpetrator, but the way the media treats it every mass shooting has its roots in mental health issues. More often than not, it’s labeled schizophrenia.
Contrary to popular belief not all of us hear voices. I don’t. My main issues were the delusions. I did have auditory and visual hallucinations too, but they were mostly just seeing bugs where there weren’t any, or hearing doors opening and finding that no one is there. I’d also hallucinate people saying different things than they actually said, most often scary things. I remember going in and out of thinking that my husband had kidnapped me. He kept asking me what was wrong because I was acting so afraid of him, but what I heard coming out of his mouth was threatening. Eventually I had to reality check with him and double check that what i heard him saying was real and not a hallucination. It’s not easy on a marriage, that’s for sure.
I also had a delusion for almost a year that I was St. Francis. I truly believed I was his reincarnation. I am usually an athiest, but when I’m sick I become devoutly catholic. I know to contact my doctor when I start feeling religious these days. For sane people it’s mostly harmless (I won’t say completely). For the psychotic, religion can become very dangerous. I had a mini-relapse last year where I believed that unless I volunteered at a soup kitchen and served God, then we wouldn’t be able to move and buy a new house. One just meant the other no questions asked. Moving was very stressful, so my symptoms started to re-emerge as they often do with high stress. Fortunately an increase in Latuda helped that go away. Religion I tell you, it’s baaad for schizophrenia.
I still can’t work really. Or if I do any work, I have to volunteer because there are no consequences if I take a mental health day as a volunteer. Stress is a huge trigger for me so I have to keep my life quiet and manageable. I am glad to be off drugs that impair me though becasue now I can finally learn to drive. I wasn’t safe on those high doses of antipsychotics because they made me drowsy and very spaced out. My husband was happy to drive me everywhere and never complained because he didn’t want me behind a wheel either. I spent so many years in a sort of drugged out haze. I am so thankful for Latuda and it’s minimal side effects.
At any rate, I thought I would share with you my story and give you hope that mental health can be managed, even psychotic disorders. It’s so important to take your meds and have a good psychiatrist and therapist. It’s not a magic cure though, it took me 11 years to find stability but I don’t regret all those years of trying because it’s so worth what I have today. So take care of your mental health. Everyone deserves help. Don’t expect instant results and expect to take meds that either don’t work or have terrible side effects, but if you persevere and work closely with your treatment team, you will find a cocktail that works eventually. I did. I have my life back. My 20’s were not very fun because I was sick the entire time, but I’ve enjoyed my 30’s. You’d have to pry my pills out of my cold dead hand before I’d stop taking them.