[Brentus]

Hey everyone,
I got to thinking today about this topic. We are blessed to have a forum that allows for like-minded people and sufferers alike to share thoughts and a lot has changed in the last 50 years in terms of how we look at mental health, but sadly there is still a stigma out there. It stems from so many facets.

Just in my life alone, I know of a few people with alternative opinions about mental health. I know one who doesn't believe it exists and the human experience IS suffering, and those who need "help" are just "weak". I know one who thinks most medications for mental health are either there to make you feel like you're doing something to help yourself but ineffective all together OR they do work, but they are to make you placid and control you.

Of course, both of those examples are a bit extreme. To be clear, I don't subscribe to either of their ideas, but I do understand the misconceptions and misinformation sometimes thrown around.

What misinformation or misunderstandings have you ran into based on stigma from both professional and private interactions?

Borderline Personality Disorder is something I swear I spent more time trying to correct some misconceptions about it than anything else when I am honest with someone with my mental health. I usually set it up like this "Be careful what you read online. It paints a very drastic picture and a lot of people fill in blanks with how THEY WOULD PERCEIVE certain actions and attitudes. Mental Health manifests differently in everyone, because we are unique in our experiences. For me, this is what it means..." and I start a dialogue.

The same with bipolar, you wouldn't believe how many people still truly think " rapid mood swings" is some core indicator of bipolar.

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

Like I said earlier, I like to open up a dialogue and express I am a human being with unique experiences and my issues may manifest different than other people -- a list of "symptoms" in a book does NOT equate to the suffering or sum up everything I go through.

Name one misconception you had about Bipolar when you were first diagnosed.

I assumed that the different states you could enter, manic, mixed, depressed, or baseline were relatively uniform, and cycled. (Depressed-ok-hypo-perhaps manic- depressed repeat). Lots of studies have shown just how varied that can be. BPII patients tend to spend more time in depression than anything else. Some studies have shown Manic episodes, when not treated, becomes more frequent the more you have them.. meaning, every time you become manic, you're likelihood of another episode is higher. (again, this was considered without treatment thus why early identification is important for bipolar patients!)

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?

Metabolic effects of second generation antipsychotics I feel sometimes are minimized but one of the most "felt" side effects of our meds. I feel there should be a little more on the table about what they are, ways we can curb the issues (such as weight) and being more frank about what our options are.

[Tart Cherry Jam]

I wish I knew about the weight gain in advance.

[Fuzzybear]

Good post Brentus. I also wish I had known about weight gain and other side effects in advance.

[Soupe du jour]

Hi Brentus. You always ask such thought-provoking questions. I'll admit that sometimes thinking about some can be challenging, in various ways, but that's usually a good thing in the end.

What misinformation or misunderstandings have you ran into based on stigma from both professional and private interactions?

First off, I swear I had virtually no idea what bipolar disorder (or manic depression) was, when first diagnosed. So I was the first in my life. I thought of the mood episodes as "brain flus" that I'd just get over, but weren't any real diagnosable illness. As for others, many mistake it for "teenage angst" in youth, or in adulthood, the hypomanic/manic behavior was seen as inappropriate or even horrible personality. Depression weakness or even unreliability (when withdrawing from others). Often people compare you to others that may not even have the diagnosis. For example, "My daughter is going through something like you did." when they weren't. I also see some people claiming to have mania when they don't even have bipolar disorder or truly know real bipolar episodes.

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

I guess through my old blog. Oddly, most of my followers there didn't have bipolar disorder. I attracted them with other topics, initially. Many thanked me for making them understand bipolar illness. My blog was also recognized for challenging the whole "I am bipolar" thing. That there is more to me than the illness.

Name one misconception you had about Bipolar when you were first diagnosed.

The whole "brain flu" notion that I mentioned further above. Also, for so many years I always blamed others for their reactions to my hypomanic/manic behavior. Eventually, I had to take some responsibility. That was the only way I could truly accept treatment and stick with it.

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?

Yes, that Lithium was NOT my wonder drug. It did so little to manage my bipolar disorder, yet gave me so many lousy side effects, including kidney damage. I'm stuck with that for the rest of my life. I also developed hypothyroidism, but the thyroid stuff is no big deal compared to the kidney damage.

One other thing: Patience can sometimes pay off. Some side effects may not ever ease, but others do. It can be worth it not to immediately reject a specific medication. Ditto for revisiting a medication that might have been abandoned in the past. It's also good not to immediately blame a medication for something that might be partially or fully mood-related, age-related, or a genetic predisposition.

[MuddyBoots]

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.

[Aurelius710]

Originally Posted by Brentus

What misinformation or misunderstandings have you ran into based on stigma from both professional and private interactions?

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

Name one misconception you had about Bipolar when you were first diagnosed.

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 haven't really into many misunderstandings or stigma, mainly because I keep my diagnosis to myself. "It's not their business until it is their business." One that I did run into was a family member interpreting every normal mood-related up and down through the lens of bipolar disorder. I mean, I'm allowed to get mad and not be manic!

The other one was a bit more insidious. It was the "Why aren't you better?" argument. Believe me, I wish I was, but I had to politely explain the lifetime nature of this illness. It's not due to lack of effort. Lack of willpower.

I never really had a chance to dismantle misinformation as I keep my diagnosis private and those I have told are fairly knowledgeable on the subject.

As far as my own misconceptions go, I had a good idea what was going on by a certain point and did my research. I was pretty clear eyed about it when my diagnosis came.

Considering meds, I have to echo most of the previous posts and say the weight gain from atypicals. The most drastic was risperdal, but the others I was on made their mark too.

[HALLIEBETH87]

I’m a peer support specialist so I share my lived experience for my job. My coworkers all know I have mental illness and I’m sure they watch me looking for signs of being unwell but for the most part I’m pretty stable the last few years. My boss is a HUGE peer support advocate as she believes everyone could use the support from someone who’s been there. I never feel judged by her. I mean I even shared with her my experience with ect last time I had supervision.

Now, family is different. They don’t get it and most of them never will. I just don’t share anything personal with them. Ever.

[Nammu]

Originally Posted by Brentus

What misinformation or misunderstandings have you ran into based on stigma from both professional and private interactions?

I’ve ran into people who think state hospitals should be brought back and the mentally defective should be packed away from the normal people because it’s not safe.

I’ve ran into people who are amazed I’m so “normal” and can hold a conversation about everyday stuff. People are also surprised I can drive!

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

I used to be a PAPMI advocate. I gave speeches and worked with lawyers to make sure the law was being followed

Name one misconception you had about Bipolar when you were first diagnosed.

I thought my life was over. Back in the day it was still called manic-depressive and my then pdoc impressed on me how serious my illness was. And that I was very very ill.

[B]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?[/are.

I wish I had known how adverse AD for bipolar were and wish it had not been a first line treatment for me. I wish I had known how detrimental benzos were. I wish I had known I could speak up and say no to being on many meds at the same time and insist they wean me off before changing to other meds and adding meds Willy nilly.

[Nammu]

Sorry that was supposed to be PAIMI, protection and advocacy for individuals with mental illness. There’s a chapter in every state.