The best thing I've read - mental illness

[Melissa Louise]

https://freddiedeboer.substack.com/p/when-you-have-come-to-the-end?r=62sw7&utm_campaign=post&utm_medium=email&utm_source=copy

On what it's like to be a 'client' of the mental health system. 

 

[PeterPan]

Do you know this guy? His mind doesn't seem very calm, even though presumably he's now on meds. Kind of striking that he's complaining of being manic while snorting ritalin.

There's a new study out showing interoceptive deficits in bipolar, schizophrenia, anorexia, etc. as well. https://www.eurekalert.org/pub_releases/2021-06/uoc-ssb061821.php   

Seems to me like his story shows the deficits of the system. Not sure about injustices, as he seems to be making some odd, less than helpful choices. My dad started on this journey with meds back in the 80s. You talk about crap treatment, that's it. This guy had NOTHING bad happen compared to the way they treated my dad. They'd drug him up so much he was a broken man, sobbing, or a zombie. So then he'd go off the meds and be homeless on the streets.

Now we have the patient's bill of rights and people are able to advocate a bit better. Seems like this guy has some more steps of self awareness, etc. to take in his journey.

[Melissa Louise]

This is exactly the experiences my dd has had navigating the system. Worse. 

[Lecka]

Wow, that’s really sad.  

[porque?]

Thanks for sharing Melissa Louise. I have a friend that is struggling with mental illness right now and can really see the truth in what the author is saying. 

[Terabith]

Pretty much, yup.  

[KSera]

3 hours ago, PeterPan said:

Not sure about injustices, as he seems to be making some odd, less than helpful choices.

He has severe mental illness. When someone is dealing with psychosis, they’re not purposefully making bad choices. 

[Drama Llama]

3 hours ago, PeterPan said:

Do you know this guy? His mind doesn't seem very calm, even though presumably he's now on meds. Kind of striking that he's complaining of being manic while snorting ritalin.

I really wish meds worked the way you seem to see them here.  

[GoodGrief3]

Excellent read, and certainly rings true for me. It's hard to conceive how difficult it is to access quality appropriate mental health care until you have tried to do it for oneself or another person who is struggling. He nailed the aspect of having to give up one's dignity in the process of it all.

[GoodGrief3]

4 hours ago, PeterPan said:

Do you know this guy? His mind doesn't seem very calm, even though presumably he's now on meds. Kind of striking that he's complaining of being manic while snorting ritalin.

There's a new study out showing interoceptive deficits in bipolar, schizophrenia, anorexia, etc. as well. https://www.eurekalert.org/pub_releases/2021-06/uoc-ssb061821.php   

Seems to me like his story shows the deficits of the system. Not sure about injustices, as he seems to be making some odd, less than helpful choices. My dad started on this journey with meds back in the 80s. You talk about crap treatment, that's it. This guy had NOTHING bad happen compared to the way they treated my dad. They'd drug him up so much he was a broken man, sobbing, or a zombie. So then he'd go off the meds and be homeless on the streets.

Now we have the patient's bill of rights and people are able to advocate a bit better. Seems like this guy has some more steps of self awareness, etc. to take in his journey.

There were difficulties back then and there are different difficulties now.

[PeterPan]

1 hour ago, KSera said:

When someone is dealing with psychosis, they’re not purposefully making bad choices. 

Well I can tell you that one of the things they always, always, always go through with my dad is responsibility for behavior. (taking medication, apologizing, recognizing how your choices affect things, etc.) I've spent years dealing with the consequences of my dad's choices and I very much appreciate that the professionals were able to move him from being oblivious about his actions to caring about the consequences, caring about his responsibility to be the best he could.

 

4 minutes ago, GoodGrief3 said:

He nailed the aspect of having to give up one's dignity in the process of it all.

My dad was a completely broken man before he was willing to take what they said. And the crap they use destroys your memory, fries you, makes you drool, leaves you with tardive dyskinesia. Now you're stable and can be kept in a home. It's why I've worked so hard with genetics to keep my ds OFF the meds so far. 

I don't know how someone would make happen the level of care my father has gotten. Over a decade of weekly psychiatric appointments (1:1) and then group sessions 2-3 days a week. His state offered unlimited mental health services to vets before COVID. My state, appallingly, does *not*. If he shows up at the ER for the VA hospital and is unstable, they check him in and get him stable again. And they do it in a respectful way, because it's the VA and that's the culture.

 

[KSera]

10 minutes ago, PeterPan said:

My dad was a completely broken man before he was willing to take what they said. And the crap they use destroys your memory, fries you, makes you drool, leaves you with tardive dyskinesia.

Then you can understand why some people have problems with med compliance. On the other hand, the "crap" they use also gets a lot of people their lives back, and lot of people with psychosis live good lives, hold down jobs, etc, with the help of the crappy meds.

[GoodGrief3]

53 minutes ago, PeterPan said:

I don't know how someone would make happen the level of care my father has gotten. Over a decade of weekly psychiatric appointments (1:1) and then group sessions 2-3 days a week. His state offered unlimited mental health services to vets before COVID. My state, appallingly, does *not*. If he shows up at the ER for the VA hospital and is unstable, they check him in and get him stable again. And they do it in a respectful way, because it's the VA and that's the culture.

 

Access to care, even the sort that your dad received, in no way means that the care is of good quality. It's exceptionally difficult to find a therapist (and/or psychiatrist) who is current on research and motivated to customize a pathway to health, We have had access to decent healthcare, but still struggled mightily to identify decent providers.

[Carrie12345]

Looks exactly like my sister’s experience (based on my outsider observations.)

Having much more “minor” issues myself, I completely relate to “the delicate operation” of presenting severe enough for help without overstating the true degree of trouble. I’ve never wanted to hurt myself or others, so no one wants to give me the most effective treatments for my episodes of inner torment. They might get me addicted to feeling well.

It’s always going to be difficult to assess stranger after stranger in emergency mental health visits. People lie, and mental health is complex. It still needs to be improved.

[SeaConquest]

I have so much to say about this piece. I typed it all out and then deleted it because I don't feel safe enough talking about my experience with bipolar disorder in writing, where it is there for all time. If this was an actual chat group, where we could talk about this in private, I could do it, but it is just too dangerous to write about. Careers have been ruined for less.

[SeaConquest]

Screw it. I am tired of being a slave to the stigma. I will post some thoughts, but this is really hard. I may delete, so please don't quote.

As some of you know (because I have been open about it on this board), I have bipolar type I. I haven't gone into all of the details about my experience with it because it obviously wasn't relevant to homeschooling and has been a painful part of my life. Like many people with bipolar (especially a few decades ago) I was misdiagnosed with generalized depression. I had intense mood swings as an adolescent, but who doesn't I thought. I was always a good writer and my mom became concerned by some of my darker poetry. But again, no big deal. During college, I had a massive panic attack during a comprehensive exam, but I ignored it. It was during law school that I could no longer ignore that something was terribly wrong. I first went to a GP, thinking that I had chronic fatigue syndrome because I couldn't get out of bed. He diagnosed me with depression. I told him that that was impossible. I was a Stanford Law student, working for one of the premier firms in LA. I was in complete denial. He broke out the DSM and after reading it, I couldn't deny that I was clinically depressed.

I started taking antidepressants and they worked immediately. I was euphoric. It was amazing! The dark clouds were gone and I felt amazing. I was preparing for a trial at work and sleeping very little, so I was very productive. But, I was also starting to do really dangerous things sexually (which are too embarrassing and horrific for me to detail) and spending exorbitant amounts of money on luxury goods, restaurants, wine, etc. I was also drinking a lot to numb the pain and hide my shame. Eventually, I would crash into these horrific pits of depression and the antidepressants would just seem to poop out on me. I wanted to die. Often. I hid it all because I was so ashamed. My grades in law school suffered. I could barely go to class. My long-distance marriage was on the brink of divorce. I kept spending money to try make myself feel better.

I went to New York for a job in investment banking. I worked 80-100 hours per week. I never slept. I used drugs to stay awake. I did more dangerous things. I wanted to die. I felt so alone. I stupidly confided in another woman at work about what was going on, thinking that we were friends and that I could trust her. My suicidal ideation got so bad that I knew that I had to leave, but how without ruining my entire chance for an offer after law school and being blacklisted by other firms? So, I told them that I had to leave because I had a “family medical emergency.” I tried to intentionally keep it vague, but they kept pushing me for more details. They asked if it was my mother and I felt like I had to say something, so I agreed just to get them off my back. So, I left with them basically thinking that my mother was sick because I was too ashamed to tell them the truth (even though they weren’t entitled to know any details at all).

Then, September 11^th happened. The office was across the street from the Twin Towers and Wall Street was decimated. I knew that offers were going to be rescinded, no matter my personal issues. But, when I called the company a few months after 9.11, to find out the status, I learned that the woman that I thought had been my friend had betrayed me to ingratiate herself and try to save her offer. She told the company that I had lied and that my mother was not sick. She conveniently left out the fact that there was indeed a real medical emergency.

Once I came home and got some sleep, I began to feel better. For awhile. I continued with those recurring cycles—not knowing that they had a name—for a decade, after my initial diagnosis of depression. It wasn’t until Memorial Day of 2006 that my friends started to notice that something was really off with me. I had recently started working for a new firm as an attorney and was having to put in insane hours. I wasn’t sleeping again and my friends were worried that I wasn’t well. One of my friends recommended that I go see her therapist. My friend was also an attorney, and she had struggled mightily with depression from her job, so I agreed to go to her therapist. During our first session, my friend’s therapist recommended that I see a psychiatrist with whom the therapist regularly collaborated. I went to see him during lunch one day. That day changed the entire course of my life.

When I talked with him, he asked me questions that no one had ever asked me before. He asked about my spending habits, about my sleep, about my sexual habits, about my moods, etc. Eventually, he told me that I had bipolar disorder. I had no idea what that was. He also wanted me to go inpatient in the hospital. I can read a medical resume. This guy had checked every box. So, I had no reason to distrust his expertise, but I “knew” that if I went inpatient, my career was over. I left his office and went back to work and immediately started Googling. I read that people with bipolar have a 25% of chance of killing themselves. I knew then that I was in serious shit. I walked out of my office and didn’t come back. I was in some sort of fugue state, a kind of shock, I think. 

I ended up taking a medical leave of absence because the psychiatrist and I came to an agreement: I would check myself into an Intensive Outpatient Program at Cedars Sinai Hospital in LA vs him admitting me as an inpatient involuntarily. My mom came to stay with me so that I was safe when I was home at night. During the day, I went to the hospital program all day. I thought I was going to be there for a week. I ended up staying six months. The longer I was there, the sicker I realized that I was because I finally began to understand that I was dealing with a chronic mental illness. This was an illness that I had been hiding from myself and the world for over a decade, and I was finally coming to terms with the fact that I couldn’t hide from it anymore. I had to learn to manage the illness, or it would kill me. My life as a securities litigator in a major international law firm was not at all conducive to successfully managing bipolar disorder, so I didn’t know what to do. I spent months, working with therapists and physicians at Cedars, to try to plan for how to move forward with my life.

They urged me to speak with the partners about my illness and to ask for accommodations. I tried to go back to the firm part-time and to do as my medical team counseled me to do, but I knew it would never work. It wasn’t long before the partners had me working as I was before, and shortly thereafter, I was ready to jump off the roof of my high-rise, doorman building in Marina Del Rey. At that point, my psychiatrist pulled the plug and said that I had to leave the firm and file for disability, or he would put me in the hospital involuntarily. I left the practice of law in 2007, after being royally berated by the partners when I gave my notice – so much so that I think I have PTSD from the experience (I still have frequent nightmares that I am at the firm and used to think that people from the firm were following me because I felt so guilty for leaving).

In the years since, I’ve had horrific post-partum depression (bordering on post-partum psychosis from sleep deprivation) with both boys' pregnancies, which included an overdose, and I've had some bad flares on occasion, where I have checked myself into the hospital for brief stays, but nothing like the old days for quite awhile. I have been stable enough for long enough that I felt ready to consider going back to work, even though both my husband and my medical team were initially opposed to my idea. But, I made it through nursing school and now I am embarking on working FT again for the first time since 2007. To say that I am nervous about whether I can handle it would be an understatement, especially since new nurses usually start on night shift. I would love to ask for day shift as a reasonable accommodation, but the stigma of bipolar disorder is simply too great. I have learned my lesson about disclosing that kind of information in the workplace. No good ever comes of it.

I have been working at our county psych hospital since August of last year, and one of the issues I thought about was whether working in psych would be triggering for me. I haven’t been a patient in our hospital, but I have been a patient in some of the other hospitals in my area. Could I work in a unit where I was once a patient? Honestly, it hasn’t been a problem. If anything, as long as I maintain good boundaries, my lived experience has been an asset. It makes me a more empathic care provider. And ironically, working in the ICU, where I am so close to death, has actually been good for my depression. It makes me appreciate life more and not focus so much on all of my usual anxieties.

There is so much more that I could say about all of this. It would easily fill the pages of a novel. But, I can honestly say that, even though many mistakes were made, without my friends, my family, and the numerous caring medical professionals who have helped me over the past 20+ years with diagnosis and treatment, I would not be alive today. I can also honestly say that it is entirely possible to live a full life with a severe mental illness and I hope to be able to live in a world, free of stigma, where more people are able to see that possibility for themselves, for their loved ones, and for others.             

 

Edited June 30, 2021 by SeaConquest

[KSera]

Thank you so much for taking the time to write that all out and sharing. As you said in your last paragraph, your story gives me hope for one of my young adults who has significant difficulties. Right now it’s hard to see how she’ll reach a point of having a job and/or being independent. Your story is a good reminder that things don’t stay the same as they are now. 

[Melissa Louise]

@SeaConquest

I don't want to quote, in case you decide to delete later, and the reactions we have to use seem lame. 

Thank you for sharing your story. I'm so glad things are going well for you now, due, I'm guessing, to the incredible hard work you've put in over the years. 

The stigma around accomodations is real. A lot of lip service to it; not so much genuine accommodation. 

I hope we only get better at mental health care. 

 

[SeaConquest]

12 hours ago, KSera said:

Thank you so much for taking the time to write that all out and sharing. As you said in your last paragraph, your story gives me hope for one of my young adults who has significant difficulties. Right now it’s hard to see how she’ll reach a point of having a job and/or being independent. Your story is a good reminder that things don’t stay the same as they are now. 

Are you familiar with Professor Elyn Saks at USC? She has been very inspiring for me.

 

[SeaConquest]

Professor Kay Redfield Jamison at Johns Hopkins also has had an amazing career despite bipolar. And don't forget Carrie Fisher. If Princess Leah can do it, so can I. 😉

[pinball]

If a person who has been treated for depression has one manic episode, does that mean she definitely has manic depression?

will she necessarily have another manic episode?

what about “precipitating events?” like, what if the manic episode was brought about by extremely stressful, but rare, events?  does that make it more or less likely to happen again? 

Thanks for any answers or insight.

[SeaConquest]

41 minutes ago, pinball said:

If a person who has been treated for depression has one manic episode, does that mean she definitely has manic depression?

will she necessarily have another manic episode?

what about “precipitating events?” like, what if the manic episode was brought about by extremely stressful, but rare, events?  does that make it more or less likely to happen again? 

Thanks for any answers or insight.

One manic episode is enough to be diagnosed with bipolar disorder (the DSM no longer uses the term manic depression), but I want to be clear about what constitutes a manic episode. It has to last at least one week and be present most of the day, nearly every day (or any duration if hospitalization is necessary). Hypomania (bipolar type II) must last for at least four days.

And, in terms of manic behavior, at least three or more of the following symptoms must be present and represent a significant change from usual behavior: 

Inflated self-esteem or grandiosity
Decreased need for sleep
Increased talkativeness
Racing thoughts
Distracted easily 
Increase in goal-directed activity or psychomotor agitation
Engaging in activities that hold the potential for painful consequences, e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments

Will it happen again? There is no way to know. Without medication, I can only speak from my own experience that it is inevitable for me. Medication keeps me alive and I wish I had been correctly diagnosed and treated with appropriate medication much sooner. But, most of the time, I don't have full blown depression or full blown mania. Because I am on mood stabilizers, the swings are not like being on an enormous roller coaster any more. I get little hypomanias that are manageable and don't debilitate me. Properly directed, they're actually a bit of a super power. They don't call bipolar the CEO's disease for nothing.

ETA: I think most people have mental illness exacerbated by precipitating events.

Edited June 30, 2021 by SeaConquest

[pinball]

Thanks @SeaConquest

i appreciate your openness so much.

have you heard of precipitating events? Almost like there is a tendency or predisposition toward bipolar disorder, but then the precipitating events occurred that triggered the manic episodes.

and how long can manic episodes last? Weeks? Months?

does a person know she’s in a manic episode?