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Old Jun 28, 2023, 07:55 AM
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MuddyBoots MuddyBoots is offline
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Member Since: Sep 2020
Location: Live Free or Die!
Posts: 7,155
What misinformation or misunderstandings have you ran into based on stigma from both professional and private interactions?

I've been called "immature" "vicious" "rabid" told I have multiple personalities. Most of the stigma I get comes from my substance use because that's what the town knows about. I don't get much judgement/stigma from professionals on my schizoaffective or bulimia other than the occasional "are you taking your meds?" when I'm struggling.

Once I went to the ER because I hadn't slept for days and was experiencing psychosis (although I didn't know it at the time). They put me in the safety scrubs, saw track marks and probably a history of substance use in my records, gave me a tiny dose of hydroxyzine and kicked me out. After I changed the first nurse that saw me pretty much yelled in the middle of the ED "Watch out, she's got track marks!" Loud enough for all the other patients in the hallway and all the doctors, nurses, security, and whoever else was working in that area to hear.

Every time I get manic, I immediately get drug tested (and then get the third degree for testing positive for benzos when I'm prescribed Valium but they think I'm taking more or less than I'm prescribed).

I live in a small town and have had a few incidents where the police got involved, and now every time I come across someone like at a fair or for voting or something they always watch me like a hawk, as if they were waiting for me to suddenly go from being calm as a clam to slashing tires and lighting things on fire.

Then there are the people (like my dad) who say "When I get too hyper, I just smoke weed. When I get too depressed, I just take uppers." Because that helps someone trying to recover from substance use disorder who gets psychosis from both marijuana and basically any stimulant.

I've also been told I just need to work on my self-esteem.

Have you ever helped dismantle misinformation others have about your conditions?

I've explained to a few people what schizoaffective disorder is and what the symptoms are and what it feels like to have it. Usually they've never heard of it so I say something like "I experience things that aren't true in this reality like hearing things no one else does and thinking things others don't find true, and sometimes my mind goes into overdrive and I get really frenzied and then sometimes have a depressive episode. It's basically schizophrenia and bipolar combined."

Lastly, we all know the frustration of side effects with psych meds. Is there anything you wish you knew before taking a specific med/your current cocktail?

I'm with the others on the weight gain. I was told weight gain was a side effect, but I was thinking like 5-10 lbs. Not 50-100 lbs (Seroquel/Zyprexa/Clozapine/Depakote). I was never told about akathisia either, so when I experienced it for the first time from Latuda I thought it was really bad anxiety and I was swallowing Ativan like no tomorrow.
This isn't exactly what you asked about, but the first time I was put on Haldol decanoate they put me on 225mg which is extremely high. The side effects ended up making me suicidal and I ended up in the hospital for the remaining two weeks that it was in my system. Later on I had a psychotic episode and was recommended Haldol and I said no way and the doc looked at my records and told me the starting dose is only 50mg and I can take valium to stop the akathisia. If I had known that from the start, that would've saved me a lot of torment because Haldol is my med and I went years without it trying things that didn't work and avoiding the thing that did work.
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Brentus
Thanks for this!
Brentus