Consent in the Age of Social Media

I’m blessed to know some wonderful writers.  Here are some thoughts from JoAnne Soper-Cook on consent in the age of social media, and how it ties into mental health.

The Cycle of Negative Thoughts

This wonderful bit of writing couldn’t be better timed. Read and heed.

https://wp.me/pa5T1v-G

Q & A: Should you tell your friends, family and employer you are bipolar?

When I was first diagnosed I thought “Hey! I’ll be the change! I’ll tell everyone, and open up a meaningful, constructive dialogue about mental illness! I’ll start getting rid of the taboo!”

Boy did that work out well!! <NOT>

My family seemed kind of obvious. I had to tell them, if for no other reason than to explain my behavior of the past 30 years. And in that sense it worked well. But in another sense it was… not great. My parents felt guilty they hadn’t caught it much earlier. My brother didn’t believe it at all – he thought (still thinks) I just found a good excuse for being a bitch. Oh, and that I should get a job and stop feeling sorry for myself. (sigh)

My extended family accepted it at once. How else could you explain anyone so odd? But from that point forward I was completely disregarded. Trying to explain Bernie Sanders and his idea of socialism, they did the social version of “tut tut dear. Don’t bother your pretty little head about things you can’t understand.” I tried to warn about the rise of fascism. Same results. I was dismissed to a man. Their other reaction was worse. They put up with me because it was their Christian Duty <tm>. They pitied me in my tragic state, and so tolerated my odd ideas of fascism, socialism, at least until election day 2016. Then they told me to stfu, because no one wanted to hear me any longer. Oy.

Most of my friends were pretty cool about it, but only because they already knew. They didn’t know the exact name, but knowing I was nuts… it was obvious. And I didn’t have many friends to begin with – a consequence of being bipolar to begin with.

I told my neighbors, so they’d understand what they were living next to – so they wouldn’t judge me too harshly when I was having a bad day. And I immediately became a social pariah. Little kids were frightened of me (no doubt warned away by concerned parents), no one would meet my eyes. I didn’t have an employer, but I’m sure no good would have come from my confession had I told them.

Your mileage may vary, of course. But my opinion of being open about it, starting a constructive dialogue, has changed 180 degrees. If you’re in a relationship you have an obligation to tell them. The rest of them… really think about it before you tell them anything.

I wish you the best!

Q & A: Can you please explain what you mean by you have been diagnosed with both? Meaning Bipolar AND Borderline personality disorder?

“… Please explain how your doctors came to this second diag. of Borderline and how is it different of adding to your already Bipolar condition. I believe I am suffering from more than Bipolar because of my rage that has become very violent and I am NOT violent person ….?”

I was originally diagnosed as Bipolar I / Psychotic. Each diagnosis I received after that was “in addition to”, rather than “instead of” the Bipolar diagnosis. I am both Bipolar and BPD, as well as several other things. I was in therapy for years after my initial diagnosis – expanding the original is apparently a common part of the process.

I **COMPLETELY** understand what you mean about the rage. Man, when it gets going… it’s like a bloody force of nature. I never thought of myself as being a violent person either. Until, one day, I was. So here’s my understanding of how the two conditions work together. I must put the disclaimer here that I’m not a medical professional. I’m simply a patient who has observed this from the front lines for 20 years. With that being said…

For some conditions I really disagree with the phrase “mental illness”. It makes it too easy for the uninformed to conclude that it’s all in our heads. Bipolar is a physical illness – a chemical imbalance – that manifests via wild mood swings and (in the worst cases) irrational behavior. When I was manic I’d be extremely hyper. I’d be the life of the party! I’d have wild sex! I’d spend money like it was nothing! I’d sign up for a college degree!! Hell, I’d TEACH the class! Let’s move across the country and get MARRIED!!! I want a baby! NOW!!!!!!!!!! Everything seemed like a great idea, easily accomplished. The fury I’d feel if someone stood in my way was hair-trigger, irrational, immediate. Dangerous. Very dangerous. I still find it hard to believe I didn’t kill someone. Seriously.

As the manic phase passed I’d become somewhat lucid. Everyone I made all those promises to expected me to hold up my end of the deal . Which, six months ago, sounded like a grand idea! Only now my more lucid self is thinking… what the heck just happened?? What did I do? WHY??? My creditors were screaming at me, my phone would ring non-stop, my fiance was just confused… I’d burn bridges as fast as I made them. And that’s when I was lucid. The Depressive phase of Bipolar was still ahead.

Once into the Depressive phase I’d feel nothing but self contempt and loathing. How could I do that? How could I say those things, promise those things? I just let everyone down, how can I face them again? I can’t even explain why I did it! The anger turns inward. Homicide becomes suicide. I’ve made three serious suicide attempts, maybe half a dozen less serious. You should see the scars – they’re impressive! There were days I couldn’t move, much less get out of bed. And if, for some reason, I really did have to move, God help anyone who was close. The Beast would be roaring, screaming in pain, fear, confusion. And ultimately anger.

Repeat.

So if that’s Bipolar, where does Borderline come in? Unlike Bipolar, Borderline is a personality disorder. I love this definition:

“Personality Disorders are a class of mental disorders characterized by enduring maladaptive patterns of behavior, cognition, and inner experience, exhibited across many contexts and deviating from those accepted by the individual’s culture.”

Personality disorder – Wikipedia

The key phrase here, for me, is “maladaptive patterns of behavior”. “Maladaptive” is defined as “not providing adequate or appropriate adjustment to the environment or situation.”

So an adaptive pattern of behavior is an appropriate adjustment to the situation you find yourself in…. right? Right. Here’s the catch. Most people who are bipolar don’t know they’re bipolar until they’re diagnosed by someone outside of themselves. In my case, I was out of control with absolutely no idea why between the ages of 12–30. Eighteen very long, very confusing years. Or, roughly nine complete Bipolar cycles. That’s a lot of water under a lot of burned bridges. I couldn’t explain what I was doing or why. But the rational part of me was somehow held accountable for all the actions my irrational illness was performing. So I developed symptoms of Borderline in an attempt to make this wild merry-go-round of emotions somehow make some sort of sense. I didn’t deliberately set out to do it. I simply developed certain coping mechanisms that helped me endure the madness of the situation.

There are four types of personality disorders: Odd, Dramatic, Anxious and “other”. Borderline is part of the second group – “Dramatic”. They’re characterized by “dramatic, overly emotional or unpredictable thinking or behavior and manipulative, exploitative interactions with others. “

Cluster B personality disorders – Wikipedia

Personality disorders are “inflexible and pervasive” for a reason. Something within you thinks your survival depends on this behavior. The only problem is that situations change – personality orders do not. For me, once I received my initial diagnosis I was able to say “Oh, so THAT’S what’s going on! I get it!” My logical, rational side now had something to grab on to. Unfortunately, my emotions and behaviors were already set into that “inflexible and pervasive” pattern by default. It’s understandable damage from living with Bipolar so long. My poor brain had no tools to turn my reactions off, since 18 years of experience had taught it (beyond any doubt) that everything was about to blow up. Again. GET READY!

So that’s how I came to be both Bipolar (born with it) and Borderline (developed it due to the Bipolar). Someone with this diagnosis usually sees both a psychiatrist and a psychologist. The psychiatrist can prescribe medications to help level out the physical symptoms of Bipolar, while the psychologist can give the patient emotional tools needed to deal not only with the mood swings, but also with the fallout.

Q & A: What does society get wrong about those on the autism spectrum?

I can’t speak for all of society, but I can speak for myself. I associated autism with the most obvious physical symptoms of Down Syndrome. The rounded appearance, the odd gait, the stereotype. When I started researching what was wrong with me a voice in the back of my head, very early on (let’s call it “common sense”) said “you’re autistic”. My reasoning, superior intellect voice said “don’t be ridiculous! You’ve got amazing reflexes! You’re an athlete and could have been a model at one point. You’re gifted in communication. You don’t rock, flap, screech, scream or look rounded. You’re not autistic.” To which common sense whispered “… yes you are.”

It took me years and years and years to overcome my bias and prejudice against those who are autistic to admit I might have it. And several years after THAT to get tested. And now, two years after the diagnosis, acceptance is still a long way away.

So. What I got wrong. Autism CAN mean rocking, flapping, making odd noises, etc. But not always. In me it means ill adapted socially, lightening quick in many other areas, can’t solve for “x” (NOT NOT NOT my fault!!! NOT NOT NOT a character flaw!!!) but can understand theoretical physics (even if I find it nearly impossible to spell). It doesn’t negate you as a person (no matter what you privately think). I’m working on that last bit.

Michael Davis

I’m curious. “You’ve got amazing reflexes! You’re an athlete and could have been a model at one point. You’re gifted in communication.” And you apparently don’t stim. So what aspect of autism DO you have?

 

Great question Michael! It’s one my therapist and I go over quite often. Here’s the problem in a nutshell: “the criteria for diagnosing autism spectrum disorder (ASD)—a developmental condition that is marked by social and communication difficulties and repetitive, inflexible patterns of behavior—are based on data derived almost entirely from studies of boys.“ That’s from a fantastic article in Scientific American –

Autism–It’s Different in Girls

“New research suggests the disorder often looks different in females, many of whom are being misdiagnosed and missing out on the support they need “

The statistic they include in the article is wrong, though. The new statistic is 1 in 59, not 1 in 68.

“In short, the brain of a girl with autism may be more like the brain of a typical boy than that of a boy with autism.”

BINGO! Here’s the description of Jennifer O’Toole from the article. You might as well substitute my name for hers.

“On the outside, she looked pretty much the opposite of autistic. At Brown University, she was a cheerleader and sorority girl whose boyfriend was the president of his fraternity.

But inside, it was very different. Social life did not come at all naturally to her. She used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her. From the time she started reading at three and throughout her childhood in gifted programs, O’Toole studied people the way others might study math. And then, she copied them—learning what most folks absorb naturally on the playground only through voracious novel reading and the aftermath of embarrassing gaffes.”

In fact I’m so good at it that I wanted to go into acting as a profession. My father decided that was too paltry a career for someone with a 155 IQ and shut that down almost at once. He didn’t forbid it. He just looked at me one day and said “You’re not really going into acting, are you?” And that was that.

Like O’Toole, I have a strong obsessive streak. If you get me started on a topic I’m interested in you’ll hear quite a lot about it. For example… this reply! LOL   I really enjoy giving detailed answers if someone shows interest, and I know what I’m talking about. The nickname for this is “Little Professor Syndrome” (again coined to describe boys with autism).

“…she can be overwhelmed by crowds and is bothered by loud noise and certain textures—and her social awkwardness made her stand out. Her life was dominated by anxiety. Speaking broadly of people on the spectrum, O’Toole says, “There is really not a time when we’re not feeling some level of anxiety, generally stemming from either sensory or social issues.” Story of my life.

Applied specifically to me, I understand theoretical physics well enough to actually promote some of my own theories. But until I was in my 30’s I couldn’t solve for “x”. It didn’t make any sense, because if 2+2=x, then x is obviously 4. So if you show me 2+3=x I was sunk. Because x = 4. We just established that. So HOW CAN IT BE 5???

Incidentally, if you have a moment, spare a kind thought for my father. The poor guy aged visibly trying to get me through algebra.

I also can’t spell. I’m faceblind. I’m highly empathic, so much so that I simply can’t function if someone is in pain around me. Two of my senses are maxed out – I can’t function if there’s a television blaring in the background, and my skin is extremely sensitive. My nose, eyes and tongue are all diminished.

What my common sense was picking up on was the IQ. How could I read books by Hawking and Penrose? how can I possibly grasp theoretical physics and imaginary time and yet not be able to solve for x? How is it that I’m primed for a Master’s and PhD but I couldn’t get an undergrad? The obvious answer is autism. I just had to work around the fact that I’m not a boy. 😉 It took a while!

Q & A: How do you find a patient advocate? Do they cost money or can you get one for free?

Thanks for asking for my advice! If you’re in the hospital, there should be a patient advocate on staff. I found this out the hard way!

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The first time I was in a psych ward it was for quite a while. So long, in fact, I don’t actually know how long I was there! Long enough to get a bit better, anyway. But my first few nights were really rough. I’m a chronic insomniac anyway, but put me in a strange place, a strange bed and with a roommate who talks in her sleep…? It wasn’t going to happen. I tried to explain this to the nurses, but they’re not used to people telling the truth. They ARE really used to people lying to get drugs though. So they blew me off, but put me on a suicide watch.

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Grand! So now I’m in a strange place with someone peering through the window at me every 15 minutes, and don’t forget I’m locked in. It’s basically jail for crazy people, obey or we get the coat that ties in back and the rubber room. I can’t sleep and I’ve been commanded to sleep. I must sleep or it will be seen as being willfully disobedient. Um, guys? So I started having a panic attack. I went back to the front desk and told them what was happening. I told them that my best friend was used to talking me through night terrors, and it would really help if I could talk to her. It was 10 minutes after they had turned off the phones for the night, but could I please call her? It would help a lot and might let me sleep.

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They were starting to get nasty at this point. I was to go back to my room, lay down and SLEEP immediately. Anything else would be a violation of ward rules. Oh yeah. That helped. I did as commanded, as much as I could. I lay there listening to my roommate babble, and waved at the nurse every 15 minutes when she came to check that I was still alive. This went on for a few hours. Then the nurse brought me a cup of pills. She refused to tell me what they were, but assured me that absolutely no one could stay awake after taking this cocktail. I was so grateful, I didn’t ask any questions. I just swallowed it down. And… it didn’t work. I think that sort of freaked them out. I was not only wide awake every time they checked on me, I was actually kind of wired. Welcome to the wonderful world of manic episodes!

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Anyway… I was convinced that this whole horrible night could have been avoided had they let me talk to my friend for just a few minutes. The girl just knew exactly what to say when I was climbing the walls. Instead I was threatened and finally drugged then threatened again. Most of the horrible things I had galloping through my brain were now firmly stuck there and I was jumping at dust bunnies, I was so nervous. The moment the shift switched to the day crew, I went back to the front desk and demanded to see a patient advocate. Man, THAT got some serious attention! They wanted to know what happened, why I asked for the advocate. I refused to tell them, or even speak to them, until the advocate appeared. And that happened pretty damn skippy!

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She took me into a back office and I told her what I just told you. I invited her to check the records to verify my story, and assured her that the night crew had screwed up just about every way possible. I also told her exactly how many times I waved at the night nurse – what else was there to do but count?

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Bottom line, I was transferred to a private room. The staff was MUCH friendlier from that point forward. They even let me use my computer (supervised, of course). I couldn’t go online, but I didn’t want to. I just wanted to play The Sims. 😉 I was there so long I taught half the nurses how to play by the time I left.

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I don’t know what you’re going through, but if you’re reaching out with this question I’d definitely ask to speak to the advocate. If you’re worried about finances make that your first question. But do talk to them if at all possible. Make your case about whatever’s going on – give them facts, try not to editorialize. But at the same time explain where whoever it is dropped the ball, and the potential consequences you have experienced, or fear you may experience in the future. That’s why they’re there.
Good luck!