Linden Lodge is so blessed to be in this community. Our wonderful neighbors always show up for us when we need them. We sincerely hope that you know how much we appreciate you.
Deep Creek Baptist Church, thank you for all that you do!
The following op-ed appeared in the Wall Street Journal on March 26, 2019.
Where Did the Schizophrenics Go?
E. Fuller Torrey and Wendy Simmons
Wondrous are the ways of Washington. In a single day, the federal government officially reduced the number of people with schizophrenia in the United States from 2.8 million to 750,000. With a change of the National Institute of Mental Health website in 2017, two million people with schizophrenia simply disappeared.
The 2.8 million estimate, or 1.1% of the adult population, had been the official standard for the U.S. since the 1980s, when the last major prevalence survey was carried out. The figure was provided to Congress in 1993 and used for national estimates such as the cost of schizophrenia.
NIMH Director Joshua Gordon wrote in the Psychiatric Times that “the 1.1% figure is no longer scientifically defensible” in view of “the most recent findings.” These findings come from a 2001-03 National Comorbidity Survey, which included only those who lived at home and acknowledged symptoms of schizophrenia. It excluded those in hospitals, nursing homes, group homes, jails, prisons, homeless shelters and on the streets. Nor did it include the people with schizophrenia among the 29% who refused to participate in the survey.
In short, the 750,000 estimate, 0.3% of the adult population, was an absurd undercount, obvious to anyone with knowledge of the subject.
Why would a federal health agency want to make two million patients disappear? Welcome to Washington. Administrators spend a lot of time trying to make their agencies look good to the public and especially to Congress, which controls the purse strings. In 2006 Congress ordered the National Institutes of Health to make public how much they spend on each major disease. These figures, along with the number of people affected by each disease, allow anyone to determine quickly the NIH’s research expenditure per patient with schizophrenia, autism or any other disease, and compare them. It can be argued that the quality of the research portfolio is a better metric than expenditure per patient, but the latter is what most advocacy groups use.
In 2016 NIMH spent $254 million on schizophrenia research. With 2.8 million people affected, that was only $90.71 a patient. NIH expenditures for Alzheimer’s disease were $162.98 a patient ($929 million for 5.7 million people) and Parkinson’s disease commanded $173.12 a patient ($161 million for 930,000 patients as of 2020).
This imbalance created a problem for the NIMH. There were two ways to “solve” it: by spending more money on schizophrenia research or by reducing the number of people with schizophrenia.
Thus two million people with schizophrenia disappeared from the figures and voilà—expenditure per patient soared. Even though schizophrenia research funding fell in 2017 to $243 million, the NIMH can now claim to spend a mouth-dropping $324 per person. Call it a Washington victory for schizophrenia patients.
Dr. Torrey is associate director for research and Ms. Simmons is a research associate at the Stanley Medical Research Institute.
Hallelujah! This can have a major impact on our area, both locally and statewide, and on the population the Linden Lodge Foundation supports and serves. Please check out the news below and consider making the pledge to support more access to inpatient beds.
This week marked a milestone for our efforts to reduce the preventable tragedies caused by the lack of inpatient treatment and encourage #aBedInstead.
The United States now has fewer state psychiatric treatment beds per capita than any other time in our nation’s history. Without necessary beds, those in need of care experience delayed treatment, unnecessary crises, rampant criminalization and countless preventable tragedies. In 2016, the Treatment Advocacy Center launched our #aBedInstead campaign to bring light to this crisis and demand change.
On Tuesday, Secretary Azar of the U.S. Department of Health & Human Services announced important regulatory changes that will allow states to receive Medicaid reimbursements for mental health treatment in inpatient settings known as IMDs, or institutions of mental disease.
Since the 1960s, Medicaid IMD law has prohibited such payments for adult inpatient treatment, undermining existing medical facilities and exacerbating a national bed shortage crisis – effectively denying medically necessary care. This longstanding policy has disproportionately discriminated against adults with serious mental illness, many of whom are Medicaid beneficiaries, and many of whom have suffered terrible outcomes resulting from an inability to receive timely, necessary treatment.
Both this presidential administration and the one before it have granted state waivers to permit inpatient treatment for people with substance use disorders, but people with severe mental illness were consistently left out, discriminated against simply because they were adults with a mental illness. That is why our executive director, John Snook, who serves on the Interdepartmental Serious Mental Illness Coordinating Committee, joined his colleagues in urging the Centers for Medicare & Medicaid Services to address this disparity while strengthening quality and continuity of care to community services. Their call was both heard and heeded.
Secretary Azar’s recent announcement acknowledges the negative outcomes this policy has historically caused, and underscores the importance of both inpatient psychiatric care and connecting patients to robust community services to prevent the cycle of rehospitalization.
The new waiver guidelines set forth by the Centers for Medicaid & Medicaid Services create an opportunity for states to address their shortcomings in treatment delivery, by encouraging innovation that provides patients with access to a full continuum of care.
“Inpatient beds play an integral role in the treatment of serious mental illness that has been ignored for too long,” said Snook. “By making full use of this waiver process, states will have some recourse for mitigating the inexcusable discrimination of the IMD exclusion, and to provide necessary treatment for those most in need.”
Like most complicated regulatory reform, it will take time for meaningful change to take effect. States that decide to apply for these waivers will need to demonstrate their plans to bolster community services while integrating inpatient IMD care into their broader treatment system to better help people with serious mental illness. However, this new partnership between federal and state governments offers enormous potential to improve psychiatric care and to reign in the costs associated with neglecting those most in need.
We thank all those who dedicated their time, effort, and energy to make this happen, and we will continue to update you on as work to fix our broken mental health treatment system.
Don’t Box Them In.
Give Them A Bed Instead.
Support More Access to Inpatient Beds
I’m about to go speak to NAMI Ohio’s statewide conference, Fulfilling the Promise. These are the remarks I prepared for my speech.
Before I begin, I want to warn you that this talk touches on many triggering subjects, including self-harm and suicide. I also want you to know that I’m speaking from my personal experience, and that if you or someone you know may be living with mental illness, please talk to a licensed and qualified medical professional, because I am not a doctor.
Okay, let’s do this.
Hi, I’m Wil Wheaton. I’m 45 years-old, I have a wonderful wife, two adult children who make me proud every day, and a daughter in-law who I love like she’s my own child. I work on the most popular comedy series in the world, I’ve been a New York Times Number One Bestselling Audiobook narrator, I have run out of space in my office for the awards I’ve received for my work, and as a white, heterosexual, cisgender man in America, I live life on the lowest difficulty setting – with the Celebrity cheat enabled.
My life is, by every objective measurement, very very good.
And in spite of all of that, I struggle every day with my self esteem, my self worth, and my value not only as an actor and writer, but as a human being.
That’s because I live with Depression and Anxiety, the tag team champions of the World Wrestling With Mental Illness Federation.
And I’m not ashamed to stand here, in front of six hundred people in this room, and millions more online, and proudly say that I live with mental illness, and that’s okay. I say “with” because even though my mental illness tries its best, it doesn’t control me, it doesn’t define me, and I refuse to be stigmatized by it.
So. My name is Wil Wheaton, and I have Chronic Depression.
It took me over thirty years to be able to say those ten words, and I suffered for most of them as a result. I suffered because though we in America have done a lot to help people who live with mental illness, we have not done nearly enough to make it okay for our fellow travelers on the wonky brain express to reach out and accept that help.
I’m here today to talk with you about working to end the stigma and prejudice that surrounds mental illness in America, and as part of that, I want to share my story with you.
When I was a little kid, probably seven or eight years old, I started having panic attacks. Back then, we didn’t know that’s what they were, and because they usually happened when I was asleep, the adults in my life just thought I had nightmares. Well, I did have nightmares, but they were so much worse than just bad dreams. Night after night, I’d wake up in absolute terror, and night after night, I’d drag my blankets off my bed, to go to sleep on the floor in my sister’s bedroom, because I was so afraid to be alone.
There were occasional stretches of relief, sometimes for months at a time, and during those months, I felt like what I considered to be a normal kid, but the panic attacks always came back, and each time they came back, they seemed worse than before.
When I was around twelve or thirteen, my anxiety began to express itself in all sorts of delightful ways.
I worried about everything. I was tired all the time, and irritable most of the time. I had no confidence and terrible self-esteem. I felt like I couldn’t trust anyone who wanted to be close to me, because I was convinced that I was stupid and worthless and the only reason anyone would want to be my friend was to take advantage of my fame.
This is important context. When I was thirteen, I was in an internationally-beloved film called Stand by Me, and I was famous. Like, really famous, like, can’t-go-to-the-mall-with-my-friends-without-getting-mobbed famous, and that meant that all of my actions were scrutinized by my parents, my peers, my fans, and the press. All the weird, anxious feelings I had all the time? I’d been raised to believe that they were shameful. That they reflected poorly on my parents and my family. That they should be crammed down deep inside me, shared with nobody, and kept secret.
My panic attacks happened daily, and not just when I was asleep. When I tried to reach out to the adults in my life for help, they didn’t take me seriously. When I was on the set of a tv show or commercial, and I was having a hard time breathing because I was so anxious about making a mistake and getting fired? The directors and producers complained to my parents that I was being difficult to work with. When I was so uncomfortable with my haircut or my crooked teeth and didn’t want to pose for teen magazine photos, the publicists told me that I was being ungrateful and trying to sabotage my success. When I couldn’t remember my lines, because I was so anxious about things I can’t even remember now, directors would accuse me of being unprofessional and unprepared. And that’s when my anxiety turned into depression.
(I’m going to take a moment for myself right now, and I’m going to tear a hole in the fabric of spacetime and I’m going to tell all those adults from the past: give this kid a break. He’s scared. He’s confused. He is doing the best he can, and if you all could stop seeing him as a way to put money into your pockets, maybe you could see that he’s suffering and needs help.)
I was miserable a lot of the time, and it didn’t make any sense. I was living a childhood dream, working on Star Trek: The Next Generation, and getting paid to do what I loved. I had all the video games and board games I ever wanted, and did I mention that I was famous?
I struggled to reconcile the facts of my life with the reality of my existence. I knew something was wrong with me, but I didn’t know what. And because I didn’t know what, I didn’t know how to ask for help.
I wish I had known that I had a mental illness that could be treated! I wish I had known that that the way I felt wasn’t normal and it wasn’t necessary. I wish I had known that I didn’t deserve to feel bad, all the time.
And I didn’t know those things, because Mental Illness was something my family didn’t talk about, and when they did, they talked about it like it was something that happened to someone else, and that it was something they should be ashamed of, because it was a result of something they did. This prejudice existed in my family in spite of the ample incidence of mental illness that ran rampant through my DNA, featuring successful and unsuccessful suicide attempts by my relations, more than one case of bipolar disorder, clinical depression everywhere, and, because of self-medication, so much alcoholism, it was actually notable when someone didn’t have a drinking problem.
Now, I don’t blame my parents for how they addressed – or more accurately didn’t address – my mental illness, because I genuinely believe they were blind to the symptoms I was exhibiting. They grew up and raised me in the world I’ve spent the last decade of my life trying to change. They lived in a world where mental illness was equated with weakness, and shame, and as a result, I suffered until I was in my thirties.
And it’s not like I never reached out for help. I did! I just didn’t know what questions to ask, and the adults I was close to didn’t know what answers to give.
I clearly remember being twenty-two, living in my own house, waking up from a panic attack that was so terrifying just writing about it for this talk gave me so much anxiety I almost cut this section from my speech. It was the middle of the night, and I drove across town, to my parents’ house, to sleep on the floor of my sister’s bedroom again, because at least that’s where I felt safe. The next morning, I tearfully asked my mom what was wrong with me. She knew that many of my blood relatives had mental illness, but she couldn’t or wouldn’t connect the dots. “You’re just realizing that the world is a scary place,” she said.
Yeah, no kidding. The world terrifies me every night of my life and I don’t know why or how to stop it.
Again, I don’t blame her and neither should you. She really was doing the best that she could for me, but stigma and the shame is inspires are powerful things.
I want to be very clear on this: Mom, I know you’re going to read this or hear this and I know it’s going to make you upset. I want you to know that I love you, and I know that you did the very best you could. I’m telling my story, though, so someone else’s mom can see the things you didn’t, through no fault of your own.
Through my twenties, I continued to suffer, and not just from nightmares and panic attacks. I began to develop obsessive behaviors that I’ve never talked about in public until right now. Here’s a very incomplete list: I began to worry that the things I did would affect the world around me in totally irrational ways. I would hold my breath underneath bridges when I was driving, because if I didn’t, maybe I’d crash my car. I would tap the side of an airplane with my hand while I was boarding, and tell it to take care of me when I flew places for work, because I was convinced that if I didn’t, the plane would crash. Every single time I said goodbye to someone I cared about, my brain would play out in vivid detail how I would remember this as the last time I saw them. Talking about those memories, even without getting into specifics, is challenging. It’s painful to recall, but I’m not ashamed, because all those thoughts – which I thankfully don’t have any more, thanks to medical science and therapy – were not my fault any more than the allergies that clog my sinuses when the trees in my neighborhood start doin’ it every spring are my fault. It’s just part of who I am. It’s part of how my brain is wired, and because I know that, I can medically treat it, instead of being a victim of it.
One of the primary reasons I speak out about my mental illness, is so that I can make the difference in someone’s life that I wish had been made in mine when I was young, because not only did I have no idea what Depression even was until I was in my twenties, once I was pretty sure that I had it, I suffered with it for another fifteen years, because I was ashamed, I was embarrassed, and I was afraid.
So I am here today to tell anyone who can hear me: if you suspect that you have a mental illness, there is no reason to be ashamed, or embarrassed, and most importantly, you do not need to be afraid. You do not need to suffer. There is nothing noble in suffering, and there is nothing shameful or weak in asking for help. This may seem really obvious to a lot of you, but it wasn’t for me, and I’m a pretty smart guy, so I’m going to say it anyway: There is no reason to feel embarrassed when you reach out to a professional for help, because the person you are reaching out to is someone who has literally dedicated their life to helping people like us live, instead of merely exist.
That difference, between existing and living, is something I want to focus on for a minute: before I got help for my anxiety and depression, I didn’t truly live my life. I wanted to go do things with my friends, but my anxiety always found a way to stop me. Traffic would just be too stressful, it would tell me. It’s going to be a real hassle to get there and find parking, it would helpfully observe. And if those didn’t stop me from leaving my house, there was always the old reliable: What if…? Ah, “What if… something totally unlikely to happen actually happens? What if the plane crashes? What if I sit next to someone who freaks me out? What if they laugh at me? What if I get lost? What if I get robbed? What if I get locked out of my hotel room? What if I slip on some ice I didn’t see? What if there’s an earthquake? What if what if what if what if…
When I look back on most of my life, it breaks my heart that when my brain was unloading an endless pile of what ifs on me, it never asked, “What if I go do this thing that I want to do, and it’s … fun? What if I enjoy myself, and I’m really glad I went?”
I have to tell you a painful truth: I missed out on a lot of things, during what are supposed to be the best years of my life, because I was paralyzed by What If-ing anxiety.
All the things that people do when they are living their lives … all those experiences that make up a life, my anxiety got in between me and doing them. So I wasn’t living. I was just existing.
And through it all, I never stopped to ask myself if this was normal, or healthy, or even if it was my fault. I just knew that I was nervous about stuff, and I worried a lot. For my entire childhood, my mom told me that I was a worry wart, and my dad said I was overly dramatic about everything, and that’s just the way it was.
Except it didn’t have to be that way, and it took me having a full blown panic attack and a complete meltdown at Los Angeles International Airport for my wife to suggest to me that I get help.
Like I said, I had suspected for years that I was clinically depressed, but I was afraid to admit it, until the most important person in my life told me without shame or judgment that she could see that I was suffering. So I went to see a doctor, and I will never forget what he said, when I told him how afraid I was: “Please let me help you.”
I think it was then, at about 34 years-old, that I realized that Mental Illness is not weakness. It’s just an illness. I mean, it’s right there in the name “Mental ILLNESS” so it shouldn’t have been the revelation that it was, but when the part of our bodies that is responsible for how we perceive the world and ourselves is the same part of our body that is sick, it can be difficult to find objectivity or perspective.
So I let my doctor help me. I started a low dose of an antidepressant, and I waited to see if anything was going to change.
And boy did it.
My wife and I were having a walk in our neighborhood and I realized that it was just a really beautiful day – it was warm with just a little bit of a breeze, the birds sounded really beautiful, the flowers smelled really great and my wife’s hand felt really good in mine.
And as we were walking I just started to cry and she asked me, “what’s wrong?”
I said “I just realized that I don’t feel bad and I just realized that I’m not existing, I’m living.”
At that moment, I realized that I had lived my life in a room that was so loud, all I could do every day was deal with how loud it was. But with the help of my wife, my doctor, and medical science, I found a doorway out of that room.
I had taken that walk with my wife almost every day for nearly ten years, before I ever noticed the birds or the flowers, or how loved I felt when I noticed that her hand was holding mine. Ten years – all of my twenties – that I can never get back. Ten years of suffering and feeling weak and worthless and afraid all the time, because of the stigma that surrounds mental illness.
I’m not religious, but I can still say Thank God for Anne Wheaton. Thank God for her love and support. Thank God that my wife saw that I was hurting, and thank God she didn’t believe the lie that Depression is weakness, or something to be ashamed of. Thank God for Anne, because if she hadn’t had the strength to encourage me to seek professional help, I don’t know how much longer I would have been able to even exist, to say nothing of truly living.
I started talking in public about my mental illness in 2012, and ever since then, people reach out to me online every day, and they ask me about living with depression and anxiety. They share their stories, and ask me how I get through a bad day, or a bad week.
Here’s one of the things I tell them:
One of the many delightful things about having Depression and Anxiety is occasionally and unexpectedly feeling like the whole goddamn world is a heavy lead blanket, like that thing they put on your chest at the dentist when you get x-rays, and it’s been dropped around your entire existence without your consent.
Physically, it weighs heavier on me in some places than it does in others. I feel it tugging at the corners of my eyes, and pressing down on the center of my chest. When it’s really bad, it can feel like one of those dreams where you try to move, but every step and every motion feels like you’re struggling to move through something heavy and viscous. Emotionally, it covers me completely, separating me from my motivation, my focus, and everything that brings me joy in my life.
When it drops that lead apron over us, we have to remind ourselves that one of the things Depression does, to keep itself strong and in charge, is tell us lies, like: I am the worst at everything. Nobody really likes me. I don’t deserve to be happy. This will never end. And so on and so on. We can know, in our rational minds, that this is a giant bunch of bullshit (and we can look at all these times in our lives when were WERE good at a thing, when we genuinely felt happy, when we felt awful but got through it, etc.) but in the moment, it can be a serious challenge to wait for Depression to lift the roadblock that’s keeping us from moving those facts from our rational mind to our emotional selves.
And that’s the thing about Depression: we can’t force it to go away. As I’ve said, if I could just “stop feeling sad” I WOULD. (And, also, Depression isn’t just feeling sad, right? It’s a lot of things together than can manifest themselves into something that is most easily simplified into “I feel sad.”)
So another step in our self care is to be gentle with ourselves. Depression is beating up on us already, and we don’t need to help it out. Give yourself permission to acknowledge that you’re feeling terrible (or bad, or whatever it is you are feeling), and then do a little thing, just one single thing, that you probably don’t feel like doing, and I PROMISE you it will help. Some of those things are:
Take a shower.
Eat a nutritious meal.
Take a walk outside (even if it’s literally to the corner and back).
Do something – throw a ball, play tug of war, give belly rubs – with a dog. Just about any activity with my dogs, even if it’s just a snuggle on the couch for a few minutes, helps me.
Do five minutes of yoga stretching.
Listen to a guided meditation and follow along as best as you can.
Finally, please trust me and know that this shitty, awful, overwhelming, terrible way you feel IS NOT FOREVER. It will get better. It always gets better. You are not alone in this fight, and you are OK.
Right now, there is a child somewhere who has the same panic attacks I had, and their parents aren’t getting them help, because they believe it reflects poorly on their parenting to have a child with mental illness. Right now, there is a teenager who is contemplating self harm, because they don’t know how to reach out and ask for help. Right now, there are too many people struggling just to get to the end of the day, because they can’t afford the help that a lot of us can’t live without. But there are also people everywhere who are picking up the phone and making an appointment. There are parents who have learned that mental illness is no different than physical illness, and they’re helping their children get better. There are adults who, like me, were terrified that antidepressant medication would make them a different person, and they’re hearing the birds sing for the first time, because they have finally found their way out of the dark room.
I spent the first thirty years of my life trapped in that dark, loud room, and I know how hopeless and suffocating it feels to be in there, so I do everything I can to help others find their way out. I do that by telling my story, so that my privilege and success does more than enrich my own life. I can live by example for someone else the way Jenny Lawson lives by example for me.
But I want to leave you today with some suggestions for things that we can all do, even if you’re not Internet Famous like I am, to help end the stigma of mental illness, so that nobody has to merely exist, when they could be living.
We can start by demanding that our elected officials fully fund mental health programs. No person anywhere, especially here in the richest country in the world, should live in the shadows or suffer alone, because they can’t afford treatment. We have all the money in the world for weapons and corporate tax cuts, so I know that we can afford to prioritize not just health care in general, but mental health care, specifically.
And until our elected officials get their acts together, we can support organizations like NAMI, that offer low and no-cost assistance to anyone who asks for it. We can support organizations like Project UROK, that work tirelessly to end stigmatization and remind us that we are sick, not weak.
We can remember, and we can remind each other, that there is no finish line when it comes to mental illness. It’s a journey, and sometimes we can see the path we’re on all the way to the horizon, while other times we can’t even see five feet in front of us because the fog is so thick. But the path is always there, and if we can’t locate it on our own, we have loved ones and doctors and medications to help us find it again, as long as we don’t give up trying to see it.
Finally, we who live with mental illness need to talk about it, because our friends and neighbors know us and trust us. It’s one thing for me to stand here and tell you that you’re not alone in this fight, but it’s something else entirely for you to prove it. We need to share our experiences, so someone who is suffering the way I was won’t feel weird or broken or ashamed or afraid to seek treatment. So that parents don’t feel like they have failed or somehow screwed up when they see symptoms in their kids.
People tell me that I’m brave for speaking out the way I do, and while I appreciate that, I don’t necessarily agree. Firefighters are brave. Single parents who work multiple jobs to take care of their kids are brave. The Parkland students are brave. People who reach out to get help for their mental illness are brave. I’m not brave. I’m just a writer and occasional actor who wants to share his privilege and good fortune with the world, who hopes to speak out about mental health so much that one day, it will be wholly unremarkable to stand up and say fifteen words:
My name is Wil Wheaton, I live with chronic depression, and I am not ashamed.
Thank you for listening to me, and please be kind to each other.
The Linden Lodge Foundation would like to share a ground-breaking report “Horrific deaths, brutal treatment: Mental illness in America’s jails,” published by The Virginia Pilot.
In a nine-month investigation, reporter Gary Harki and several Marquette University students tracked the deaths of 404 inmates with mental illnesses since 2010.
The Treatment Advocacy Center worked extensively on this piece, which reveals the brutal treatment many people suffer in our criminal justice system. The article, available here, includes disturbing images, but I encourage you to read it in its entirety.
Here are some of The Virginia Pilot‘s findings:
- At least 33 times inmates’ family or friends had warned the jails of their loved one’s mental illnesses prior to their death.
- More than 178 inmates with a mental illness died by suicide while behind bars.
- In 70 cases staff at the jail subjected the prisoner to shock, pepper-spray, restraint, or some combination thereof.
- In more than half of the deaths, families sued either the facility or the medical provider.
- In more than 40 percent of deaths, The Virginian-Pilot found that inmates with mental illness were segregated from other inmates when they died.
Without accurate data, those in charge cannot be held responsible for the inhumane treatment of the mentally ill in our nation’s jails. We urge you to share this story with your public officials and policy makers to force this accountability.
I know that reports like this are difficult to read, but they are critical for shedding light on the abuses inherent to a broken mental health treatment system. Moreover, they strengthen our resolve to eliminate barriers to treatment for people with severe mental illness. Only together can we implement reforms that prevent senseless tragedies like these.
Sincere thanks to John Snook, Executive Director of The Treatment Advocacy Center for alerting us all to this.
You are not OCD. You have OCD. That’s an important distinction.
What I’m talking about is discussing mental illness as though it’s something that you are – and not something that you have.
How many times have you heard someone describe themselves as being ‘ao OCD’ or ‘so Bipolar’? My guess is lots.
Labeling yourself with a mental illness not only overshadows how serious it is, portraying it as a personality trait or a passing mood, but also hammers home the difference in the way we view physical and mental illness.
You wouldn’t say you are a broken leg, now would you? What you’d say is that you have a broken leg. And we should be discussing mental illness in the same manner.
Describing yourself as your mental illness rather than saying you have it suggests that’s all you are. It takes up your identity. I worry that if I were to label myself as someone who is bipolar as opposed to who has bipolar, the person I’m describing myself to may never be able to see beyond that.
While I want my mental illness to be acknowledged, I want every other part of me to be recognized too.
I understand that everyone, at least everyone with a mental illness, is entitled to speak about it in a way they feel most at ease. But it worries me that not doing so properly will hold up the unfortunate idea that invisible illnesses don’t affect you as much as physical ones.
It’s unfortunate that it’s the people with mental illness who are forced to educate those without. It shouldn’t be up to us. In a perfect world people would accept that mental illness is a real, debilitating thing (well, in a perfect world mental illness wouldn’t even be a thing, but you get my point).
As a person with a mental illness who feels as though it’s my duty to educate those around me, I think it’s important that I refer to it properly. When I tell people about my bipolar disorder, I tell them that it’s something I have. That I live with. That I’m treated for.
I talk about it in the same manner that I would a physical illness. I never, ever refer to myself as a ‘bipolar person’, because this will only further increase the assumption that a mental disorder is something that you are, and not what you’ve been diagnosed with.
I feel treating a mental illness the same as a physical when being vocal about it is an important way to gradually express that mental illness is real. That mental disorders warrant a diagnosis and they shouldn’t be treated in the same way as natural emotions.
And that’s the thing – talking about mental illness as something that we are and not that we have does this. People have got it into their heads that it’s okay to refer to their moods and personality traits as a mental illness.
When someone goes off into a fit of rage because someone’s upset them, after having been quite content beforehand, someone will label them ‘so bipolar’. This is only adds to the stigma and misunderstanding around mental illness.
But how can people fully understand why this is wrong if they see people with mental illness speaking as though mental illness is something they are and not what they have?
I get it, mental illness is hard enough to deal with without someone telling you how you should or shouldn’t refer to it.
But I think that if we really want to get across how debilitating and life-consuming it can be, we can all make an effort to make sure we say it’s something we have, not something we are.
We need to make it clear that mental illness deserves the same respect as any other physical illness. We need to make it clear that our mental illness does not define us.
Though I’ve never lost a friend or family member to suicide, I have lost a patient.
I have known a number of people left behind by the suicide of people close to them, however. Given how much losing my patient affected me, I’ve only been able to guess at the devastation these people have experienced. Pain mixed with guilt, anger, and regret makes for a bitter drink, the taste of which I’ve seen take many months or even years to wash out of some mouths.
The one question everyone has asked without exception, that they ache to have answered more than any other, is simply, why?
Why did their friend, child, parent, spouse, or sibling take their own life? Even when a note explaining the reasons is found, lingering questions usually remain: yes, they felt enough despair to want to die, but why did they feel that? A person’s suicide often takes the people it leaves behind by surprise (only accentuating survivor’s guilt for failing to see it coming).
People who’ve survived suicide attempts have reported wanting not so much to die as to stop living, a strange dichotomy but a valid one nevertheless. If some in-between state existed, some other alternative to death, I suspect many suicidal people would take it. For the sake of all those reading this who might have been left behind by someone’s suicide, I wanted to describe how I was trained to think about the reasons people kill themselves. They’re not as intuitive as most think.
In general, people try to kill themselves for six reasons:
1. They’re depressed. This is without question the most common reason people commit suicide. Severe depression is always accompanied by a pervasive sense of suffering as well as the belief that escape from it is hopeless. The pain of existence often becomes too much for severely depressed people to bear. The state of depression warps their thinking, allowing ideas like “Everyone would all be better off without me” to make rational sense. They shouldn’t be blamed for falling prey to such distorted thoughts any more than a heart patient should be blamed for experiencing chest pain: it’s simply the nature of their disease.
Because depression, as we all know, is almost always treatable, we should all seek to recognize its presence in our close friends and loved ones. Often people suffer with it silently, planning suicide without anyone ever knowing. Despite making both parties uncomfortable, inquiring directly about suicidal thoughts in my experience almost always yields a honest response. If you suspect someone might be depressed, don’t allow your tendency to deny the possibility of suicidal ideation prevent you from asking about it.
2. They’re psychotic. Malevolent inner voices often command self-destruction for unintelligible reasons. Psychosis is much harder to mask than depression — and arguably even more tragic. The worldwide incidence of schizophrenia is 1% and often strikes otherwise healthy, high-performing individuals, whose lives, though manageable with medication, never fulfill their original promise.
Schizophrenics are just as likely to talk freely about the voices commanding them to kill themselves as not, and also, in my experience, give honest answers about thoughts of suicide when asked directly. Psychosis, too, is treatable and usually must be for a schizophrenic to be able to function at all. Untreated or poorly treated psychosis almost always requires hospital admission to a locked ward until the voices lose their commanding power.
3. They’re impulsive. Often related to drugs and alcohol, some people become maudlin and impulsively attempt to end their own lives. Once sobered and calmed, these people usually feel emphatically ashamed. The remorse is usually genuine, and whether or not they’ll ever attempt suicide again is unpredictable. They may try it again the very next time they become drunk or high, or never again in their lifetime. Hospital admission is, therefore, not usually indicated. Substance abuse and the underlying reasons for it are generally a greater concern in these people and should be addressed as aggressively as possible.
4. They’re crying out for help and don’t know how else to get it. These people don’t usually want to die but do want to alert those around them that something is seriously wrong. They often don’t believe they will die, frequently choosing methods they don’t think can kill them in order to strike out at someone who’s hurt them—but are sometimes tragically misinformed. The prototypical example of this is a young teenage girl suffering genuine angst because of a relationship, either with a friend, boyfriend, or parent who swallows a bottle of Tylenol—not realizing that in high enough doses Tylenol causes irreversible liver damage.
I’ve watched more than one teenager die a horrible death in an ICU days after such an ingestion when remorse has already cured them of their desire to die and their true goal of alerting those close to them of their distress has been achieved.
5. They have a philosophical desire to die. The decision to commit suicide for some is based on a reasoned decision often motivated by the presence of a painful terminal illness from which little to no hope of reprieve exists. These people aren’t depressed, psychotic, maudlin, or crying out for help. They’re trying to take control of their destiny and alleviate their own suffering, which usually can only be done in death. They often look at their choice to commit suicide as a way to shorten a dying that will happen regardless. In my personal view, if such people are evaluated by a qualified professional who can reliably exclude the other possibilities for why suicide is desired, these people should be allowed to die at their own hands.
6. They’ve made a mistake. This is a recent, tragic phenomenon in which typically young people flirt with oxygen deprivation for the high it brings and simply go too far. The only defense against this, it seems to me, is education.
The wounds suicide leaves in the lives of those left behind by it are often deep and long lasting. The apparent senselessness of suicide often fuels the most significant pain survivors feel. Thinking we all deal better with tragedy when we understand its underpinnings, I’ve offered the preceding paragraphs in hopes that anyone reading this who’s been left behind by a suicide might be able to more easily find a way to move on, to relinquish their guilt and anger, and find closure. Despite the abrupt way you may have been left, those don’t have to be the only two emotions you’re doomed to feel about the one who left you.
Alex Lickerman is an internal medicine physician at the University of Chicago who blogs at Happiness in this World. He is the author of The Undefeated Mind: On the Science of Constructing an Indestructible Self.
Image credit: Shutterstock.com
9 Ways To Fight Mental Health Stigma
Most people who live with mental illness have, at some point, been blamed for their condition. They’ve been called names. Their symptoms have been referred to as “a phase” or something they can control “if they only tried.” They have been illegally discriminated against, with no justice. This is the unwieldy power that stigma holds.
Stigma causes people to feel ashamed for something that is out of their control. Worst of all, stigma prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. And while stigma has reduced in recent years, the pace of progress has not been quick enough.
All of us in the mental health community need to raise our voices against stigma. Every day, in every possible way, we need to stand up to stigma. If you’re not sure how, here are nine ways our Facebook community responded to the question: “How do you fight stigma?”
Talk Openly About Mental Health
“I fight stigma by talking about what it is like to have bipolar disorder and PTSD on Facebook. Even if this helps just one person, it is worth it for me.” – Angela Christie Roach Taylor
Educate Yourself And Others
“I take every opportunity to educate people and share my personal story and struggles with mental illness. It doesn’t matter where I am, if I over-hear a conversation or a rude remark being made about mental illness, or anything regarding a similar subject, I always try to use that as a learning opportunity and gently intervene and kindly express how this makes me feel, and how we need to stop this because it only adds to the stigma.” – Sara Bean
Be Conscious Of Language
“I fight stigma by reminding people that their language matters. It is so easy to refrain from using mental health conditions as adjectives and in my experience, most people are willing to replace their usage of it with something else if I explain why their language is problematic.” – Helmi Henkin
Encourage Equality Between Physical And Mental Illness
“I find that when people understand the true facts of what a mental illness is, being a disease, they think twice about making comments. I also remind them that they wouldn’t make fun of someone with diabetes, heart disease or cancer.” – Megan Dotson
Show Compassion For Those With Mental Illness
“I offer free hugs to people living outdoors, and sit right there and talk with them about their lives. I do this in public, and model compassion for others. Since so many of our homeless population are also struggling with mental illness, the simple act of showing affection can make their day but also remind passersby of something so easily forgotten: the humanity of those who are suffering.” – Rachel Wagner
Choose Empowerment Over Shame
“I fight stigma by choosing to live an empowered life. To me, that means owning my life and my story and refusing to allow others to dictate how I view myself or how I feel about myself.” – Val Fletcher
Be Honest About Treatment
“I fight stigma by saying that I see a therapist and a psychiatrist. Why can people say they have an appointment with their primary care doctor without fear of being judged, but this lack of fear does not apply when it comes to mental health professionals?” – Ysabel Garcia
Let The Media Know When They’re Being Stigmatizing
“If I watch a program on TV that has any negative comments, story lines or characters with a mental illness, I write to the broadcasting company and to the program itself. If Facebook has any stories where people make ignorant comments about mental health, then I write back and fill them in on my son’s journey with schizoaffective disorder.” – Kathy Smith
Don’t Harbor Self-Stigma
“I fight stigma by not having stigma for myself—not hiding from this world in shame, but being a productive member of society. I volunteer at church, have friends, and I’m a peer mentor and a mom. I take my treatment seriously. I’m purpose driven and want to show others they can live a meaningful life even while battling [mental illness].” – Jamie Brown
This is what our collective voice sounds like. It sounds like bravery, strength and persistence—the qualities we need to face mental illness and to fight stigma. No matter how you contribute to the mental health movement, you can make a difference simply by knowing that mental illness is not anyone’s fault, no matter what societal stigma says. You can make a difference by being and living StigmaFree.
Laura Greenstein is communications coordinator at NAMI.
Note: An earlier version of this blog appeared on NAMI.org in October 2015.