I have always considered myself a success story. A poster child for treatment and medication. And I’ve been able to achieve a lot in the past 20 years since diagnosis.
A friend who suffers from anxiety and depression told me, “I figured you had all of the same problems as me, only worse.”
No, not really. I don’t have a personality disorder. I never really had any serious issues with trauma until a year and a half ago.
One in 23 Americans experience bipolar at some point in their lives. Many bipolar people experience no symptoms at all with medication. They are able to go back to normal life. Most people with bipolar disorder are closeted, and that is because the stigma is so bad. We are always at risk for gaslighting. Many people will not willingly associate with us. Yet I have close friends, clients, and professional colleagues that knew me for years before I ever told them my diagnosis. They said they said they never would have guessed.
I happen to believe that stigma, even more than the disease, is why our death rate is so high. How high? About 15% over a lifetime. To put that in perspective, annualized over the first 50 years after diagnosis, the risk of suicide if you are bipolar is about one third as high as the risk of dying from COVID-19. They are comparable.
The bipolar death rate is probably quite a bit higher in actuality, as many suicides are not reported as such and because the disease strikes people most commonly in their teens and twenties. I am told that if you can make it past middle age, symptoms decrease, particularly for women. This has proved true for my mother, who is also bipolar.
For me a lot seems to do with having access to the right formulation of Lithium (brand name vs. generic). Switching to brand name Lithium (Lithane) worked wonders for me, probably because the quality control and dosage standards are much higher. The catch is that this formulation is at present only available in Canada. I am working with a Vancouver local to get my prescription picked up and shipped to the U.S.A. Wish me luck.
What is it like to have a manic episode? It’s hard to describe. A mild manic episode is disorienting and disabling — you can’t really work except for simple tasks like housework or cleaning. Inhibitions are lowered. You might do things you would do if you were drunk, like have a fling with someone or buy stuff you don’t need on Amazon.
A full-blown psychotic manic episode is very different. It’s more like a hallucinogenic drug trip — and we’re not talking microdoses. It puts you in a different reality. For example, I might wander outside my house and onto the bridge nearby, not really knowing what I am doing or where I am. I might get on a bus and just ride for half an hour.
There is a mystical component. You feel like you are at one with the universe. Music sounds amazing. Colors and tastes are more more intense. Some bipolar people enjoy the “high.” I have never sought it out. For that matter, I’ve never tried any drug stronger than pot. It’s not that I’m not curious. Just too risky with my brain chemistry.
For me, mania has always been highly correlated with insomnia and sleep disruption. Psychotic mania can be treated successfully at home, if you have the right drugs. The safest option is probably to go inpatient.
Not much happens in a mental hospital. There are no miracle drugs or aggressive treatments. You just take your Perphenazine and mill about in a safe place where you can’t do (much) damage to yourself or others, eat bad food, try to focus your concentration enough to play a card game or read a few pages out of a book, and wait until someone decides you’re well enough to go home.
To be honest, it feels a lot like… now.
Like the Coronavirus Lockdown.
The same boredom. The same impatience. For those who have never been through something like this before, the only advice I can give is to try to keep yourself occupied, and try to be courteous and respectful to the people around you. This too shall pass.
We’ve put together a list of helpful national and local Portland, OR and Seattle, WA resources for mental health and suicide prevention, updated for COVID-19. Please let us know if any of these links are broken, or if you have new ones to suggest. Thank you, and be well.
https://suicidepreventionlifeline.org The National Suicide Prevention Lifeline at 1-800-273-8255 provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. Telephone and online chat available.
https://www.nami.orgNAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Oregon NAMI Chapter:https://namior.org/
http://gettrainedtohelp.com – Suicide First Aid. Free trainings in suicide prevention for the general public, youth workers, and more. Includes the ASIST curriculum. Trainings temporarily suspended.
Me, standing under the St. John’s Bridge in my neighborhood in Portland, Oregon. The bridge is the site of weddings, festivals, film shoots, and deaths.
How to Save a Million Lives
It starts with being visible.
November 2, 2019
In anyone’s memory, certain dates stand out forever.
I remember standing in my aunt and uncle’s sunny family room in San Mateo, California on April 18, 2018. That was when the customer service rep on the phone told me I did not qualify for life insurance. This was a problem. In fact, it was a huge problem. It meant I would not be able to obtain what is called “Key Man” Insurance, which shields professional investors in case of the accidental or untimely death of the CEO or other essential team members. Key Man Insurance is a must for any startup seeking serious investor funding (seed round or VC). Unknowingly, I had raised funds from friends and family for a venture that could not succeed with me at the helm.
I checked it out. I got a second quote. It didn’t matter that I was healthy and had managed the condition successfully for 19 years.
This wasn’t a case of bias, or stigma. It was a numbers game. The diagnosis is bipolar disorder. The reason I couldn’t get life insurance was that my diagnosis carries a 15 – 20% lifetime fatality rate. That means that as many as one in five people with bipolar disorder may die by suicide. (National Institute of Mental Health, as cited by DBSA.)
If present trends continue, over 855,000 of the 5.7 million individuals living today with bipolar disorder in the U.S will die by suicide. That’s almost a million people.
We are living in the middle of an epidemic. And one ever seems to notice.
Our company’s investor woes seemed pretty trivial in comparison.
Which brings me to the other date. Just over a year ago.
October 17, 2018
On that single day, in my home city of Portland, Oregon, we lost three people to suicide. One of the deaths happened a few hundred feet from my apartment, when a woman jumped off the St. John’s Bridge. I found out when I heard the sirens and saw the flashing red lights. I took some roses out of a vase, went outside, walked down the hill, and put the roses by the police line.
For me, that death brought home the reality of the suicide epidemic in America. I don’t know whether any of the three people who died had a diagnosis, but given the high risk factor and the fact that 1 in 23 Americans are bipolar, it is likely. Suicide fatality rates are actually higher for people with bipolar disorder than for those with unipolar depression(NCBI). Because suicide is a social epidemic, the death of one individual can result in the deaths of other individuals, who may not even share the same diagnosis. There a lot of reasons why this post has been hard for me to write. One of them is that this year, in the time since I started writing this blog post, about three weeks ago, I learned of two other likely suicides in my home communities: one here in Oregon and one in Massachusetts. The taboo around speaking about suicide is strong, just like the taboo against discussing bipolar disorder. I went to a walk this month by the American Society for Suicide Prevention. It’s a worthy event, and it does a lot of good for survivors. But nowhere — nowhere — was bipolar disorder mentioned as a cause or a killer. Talking about America’s suicide epidemic without talking about bipolar is like trying to talk about heart disease and never mentioning high blood pressure.
Last fall it felt like the bodies were literally dropping from overhead. Those deaths, in particular the one so close to home, jolted me out of complacency. I kept thinking to myself, “If fifteen percent of bipolar people are dying by suicide, why don’t we hear about it? Why aren’t we doing more to stop it?”
I had been marked as a plague victim and I didn’t even know it.
I found a replacement CEO for my startup. After stepping down, my plan had been to take a course or two in data science and rejoin the corporate world. Instead, I found myself on an entirely different path. I earned a certification in Life Coaching, another as a Peer Support Specialist, and completed the excellent QPR suicide prevention training which is offered for free to lay people in the Portland area. The goal: work part time coaching bipolar and entrepreneurial clients from around the world. Spend the rest of my time building something cool.
The crazy thing is, one year later it actually seems to have worked.
The people I have coached confound my expectations. They are C-level executives, computer programmers, bankers, and accountants. Leave every expectation you have surrounding bipolar people and their temperament or personality type at the door. Just know, above all, we are here. And there are a lot of us. The recovery rate for bipolar disorder is 80%. (Health Central) Mostly you can’t tell us apart from anybody else. Because when the medication works well for us, like most other Americans, we’d much rather concentrate on our lives and families and hobbies than on getting riled up with anything that resembles activism.
Coaching is intense. I have had more than one occasion where the client burst into tears during the first session. Unlike therapy, the emphasis is on achieving short term goals. Most of my service offerings are designed to last 3-6 sessions, although some clients stay on much longer. I think my favorite sessions are the outdoor fitness sessions, where we do the coaching during an hourlong walk or hike. I never agree to work with a client unless they are also seeing a licensed doctor or clinician. Confidentiality is key. In the event of a situation where someone’s safety is at risk or where someone expresses suicidal thoughts, I will of course contact emergency services, as well as other members of a client’s care team.
Whatever assorted coaching gurus may promise, my type of coaching won’t make you rich. That’s not why I do it. I just know that it’s important for bipolar people to be visible.
This is where the saving lives come in. It’s about much more than the coaching, although I believe that’s important and meaningful work. It’s about being visible, and letting people know that bipolar gets better. Coming out is risky, and it has a cost. You may not get asked on that second date. As a programmer the last thing you want is your supervisor wondering what medications you were taking when you pushed that last commit! But I’ve come to believe that the cost of silence is greater. Silence equals death. Stigma equals death.
Here’s how we can save one million lives over the next generation:
1.) Make stigma against bipolar people unacceptable. End the jokes. Stop using bipolar as shorthand for a personality disorder. Educate yourselves. This shouldn’t be my job, as the person with the disability, but I need to take responsibility first and foremost for my own actions. I am not “out” in every professional or social social situation, but I try to live my life in a way that I can communicate to others, who may be more closeted, that there is hope.
2.) Improve quality and access to mental health care. Bipolar people face special challenges. We encounter more stigma than people with depression or anxiety disorders, and if we are misdiagnosed, the consequences can be serious. But all mental health conditions deserve treatment on a par with physical health. The quality of generic medications has taken an alarming dive. I have experienced these issues myself, and heard alarming reports from others. Legal or regulatory action must be taken to ensure that vulnerable populations do not suffer.
3.) Work for a cure. Amazingly, for a disease that affects millions of Americans and people the world over, we still do not understand the causes of bipolar disorder. It receives only a fraction of the federal funding for diseases with a similar mortality rate. Meanwhile, the pharmaceutical industry shows off its latest advances: a pill with a tracking device to make sure the patient complies and takes their medication. We are solving for the wrong goal here.
You may have noticed that the beginning of this piece promised to tell you how to save one million lives. And you may have noticed that based on the figures above, we’re still 145,000 lives short. There’s a reason for that. The reason is that bipolar people, when we are well and healthy, save lives.
The reason is that bipolar people are our best and our brightest. We are leaders. We are artists. We are entrepreneurs and innovators. We are mystics. We are heroes. We feel deeply, and we act on the courage of our convictions. From Winston Churchill to Kanye West, the names of famous bipolar people read like a roll call. Bipolar people who are able to live out their lives to their fullest potential will design lifesaving vaccines, help mitigate climate change, and create songs and stories that sustain and offer hope for an imperiled planet. We give back every day. We are mothers and fathers, aunts and uncles, teachers and mentors, some of the best and most loyal friends you will ever find. We are generous. We go the extra mile. Maybe we are still trying to prove we are “good enough.” Maybe deep down we know that we different, and also blessed. There is a reason we are in this genome.
We have so much to give, and we are irreplaceable.