Stop Blaming Mental Illness For The Abhorrent Behavior Of Anti-Maskers

Whenever anyone behaves poorly or against the grain of what is considered socially acceptable, many people automatically attribute it to that person being crazy, off their rocker, completely unhinged, mentally ill. There is so much stigma surrounding mental illness that many assume that any unreasonable action or poor behavior must be synonymous with mental illness, because why else would someone behave so badly unless they were crazy and mentally ill.

Our country is currently in the midst of a viral pandemic, seemingly split down the middle. On one side, we have those who fundamentally believe in science, medicine and fact and are willing to take precautions for the safety of all. And on the other, we have those who are trying to politicize the virus, with many touting that the virus itself is a hoax, or no worse than the flu, or simply declaring it not their problem because nobody they know has been affected by it yet. These pandemic deniers, minimizers and anti-maskers have become increasingly fond of video recording themselves as they supposedly “stand up for their rights”, planning strikes against businesses attempting to abide by restrictions put in place for the safety of all. They storm into stores, refusing to wear masks, recording both themselves and the reactions of others, hoping to earn their 5 minutes of fame. They go in with the sole intention of showing their defiance, causing turmoil to businesses, workers and customers alike, and creating a scene worthy of becoming a viral trend.

As we have seen time and again during this pandemic, this type of egregious showboating often backfires, with those who are thumbing their nose at health restrictions ultimately being thrown out of stores and banned, being widely and publicly shamed for their apathy, and in some cases even being fired from their jobs as a result of their very public displays. Yet these bizarre occurrences continue in America, partly because these individuals want to make it fundamentally clear that they believe their personal right to not wear a mask is more important than everyone else’s right to not get sick or die, and partly because they ultimately hope to go viral for their bad behavior, to become infamous on the internet.

Yet whenever someone is called out for their horrid behavior, many people immediately blame mental illness. People assume that in order for someone to do something as foolish as to outright deny a viral pandemic that has infected over 18.5 million people worldwide and killed over 700k in less than a year, let alone to make such a spectacle of themselves by outright refusing to care about others, they must be “crazy” and “unbalanced”, that they surely must be mentally ill.

Often people in this country automatically associates horrible behavior such as this with mental illness, pointing fingers and claiming those involved “obviously need mental help” because their utter disregard for everyone else is unfathomable. Other times, the perpetrators themselves attempt to blame their own horrendous actions on mental illness whenever they are confronted. They cavalierly issue a non-apology, using mental illness as their scapegoat instead of taking any amount of personal responsibility for their own ridiculously irresponsible, ignorant actions. It’s as if they are smirking, shrugging and dismissively claiming they should not be held accountable because they are, after all, “crazy”.

Sadly, much of this comes from the stigma attached to mental illness. It is much easier for many people to assume that anytime anyone behaves despicably, they must be “crazy” and “mentally ill” than to consider that those individuals might just be inconsiderate, attention-seeking people who do not care about anyone but themselves. It is much easier to designate mental illness as the catch all scapegoat for all the wrongs in society than to consider that these people are behaving poorly simply because a portion of our society glorifies their bad behavior.

As someone who struggles with mental illness myself and who actively advocates for the mental health community, I would like to make it very clear that there is an enormous difference between the actions of these people and the mental illness community as a whole. While it is possible that someone who displays this type of abhorrent behavior might also be struggling with a mental illness, mental illness itself is not immediately to blame whenever anyone behaves inappropriately or with malicious intent. People who have mental illnesses such as depression, anxiety, ptsd, and bipolar disorder deal predominantly with issues such as self-worth, motivation to accomplish daily tasks, and battling the demons in their own heads and the trauma of their past. NAMI, the National Alliance on Mental Illness, could not have put it more perfectly when addressing the myth that being mentally ill automatically means you are “crazy”:

It’s plain and simple, having a mental illness does not mean you are “crazy.” It means you are vulnerable. It means you have an illness with challenging symptoms — the same as someone with an illness like diabetes. While mental illness might alter your thinking, destabilize your moods or skew your perception of reality, that doesn’t mean you are “crazy.” It means you are human and are susceptible to sickness and illness, the same as any other person. (1)

When attempting to attribute mental illness directly to poor behavior, let’s consider the penal system. According to the Prison Policy Initiative, there are currently approximately 2.3 million Americans incarcerated. (2) Yet, according to statistics by NAMI, “Only 5% of violent crimes in the U.S. are committed by people with serious mental illness. The unfortunate truth is that individuals with mental illness are more likely to be victims of violence than perpetrators.”(1) Furthermore, “Approximately 20% of state prisoners and 21% of local jail prisoners have ‘a recent history’ of a mental health condition.” (3) Though there are always exceptions, the vast majority of people with mental illnesses are not the least bit violent or otherwise confrontational, they are not by and large out committing crimes. With only one in five people who are incarcerated having any type of recent mental illness diagnosis,and only 5% of those with a mental illness being convicted of a violent crime, being mentally ill is clearly not the predominant driving force behind bad behavior.

Even if someone who is mentally ill were to momentarily lose control and behave poorly and irrationally, they are extremely unlikely to go on grandiose, premeditated video recorded rampages with the intention to upload the fallout later to the internet, screaming about their supposed rights to do whatever they please even if it means harming or killing others in the process. People who are mentally ill don’t normally plan out and intentionally video record their outbursts from start to finish in order to garner internet attention but rather any adverse reactions they may have are typically an unscripted, unplanned, unrecorded, spontaneous result of someone who is struggling to cope with life in the moment.

People who are struggling with mental illness often isolate and shut down. We struggle every single day to concentrate and focus on simple things, to function and accomplish daily tasks. Nearly one in five people, an estimated 46.6 million adults in the United States today, is currently struggling with a mental health diagnosis. Again, according to NAMI, severe mental illness is defined as “a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.” (4) In other words, even the most severe mental illnesses are defined specifically by the impairment and limitations they place on the lives of those who struggle with them. Being mentally ill does not typically send people out on premeditated, politically-fueled tirades and crusades to callously violate the health and safety of others for personal validation or internet infamy. If these types of self-recorded outings and outbursts were commonly indicative of mental illness, with over 450 million people suffering from mental illness worldwide according to the World Health Organization (5), there would be drastically more people causing scenes like this all over the globe.

When taking into account that there are 2.3 million people currently incarcerated and only roughly twenty percent of those have any type of mental illness diagnosis, we are looking at roughly 460,000 inmates who are mentally ill. When you further consider that there are roughly 46.6 million people in the United States currently struggling with mental illness, those who are incarcerated and also have a mental illness diagnosis account for less than one percent of the over all mentally ill population. Again, the proof is in the pudding. Over 99% of the mentally ill community are going through the motions of living their everyday lives, struggling with their diagnosis, not out committing crimes or thumbing our noses at laws or restrictions put in place for the safety of all.

We are not gathering en masse or heading out in droves, intent on recording ourselves causing a scene in the desperate hope it may make us internet famous. Many of us struggle to even function at all, let alone make plans even remotely close to this extent. Rather, these are the calculated actions of self-centered, egotistical people who are showing complete disregard and apathy for everyone else, people who place more value in their own temporary fame than in the health of their families, friends, co-workers and neighbors. These are attention-seeking individuals throwing temper tantrums, so hungry for their five minutes of infamy that they are willing to put other people’s lives at legitimate risk just to have their name trending on the internet.

Though you may see the occasional anti-mask sentiment in other countries, no other country has the widespread, reoccurring, largely combative and often explosive or violent issues that the United States has with people being unwilling to tolerate minor temporary inconveniences for the safety of all during a global pandemic. While there are some people in other countries who may disagree with wearing a mask, you don’t hear frequent stories about their citizens recording themselves causing combative scenes like you do in the United States. To date, I have personally only seen one news story out of the UK about protesters recording themselves storming a store and making a scene. The vast majority of those who disagree with wearing a mask in other countries simply organize peaceful protests or hand out informational material explaining their beliefs on the matter. For instance, in late July there was a peaceful anti-mask protest in London attended by hundreds of protesters. More importantly, those who disagree with wearing masks in many other countries appear to be a small minority. The vast majority of people in many other countries have taken a united stance, observed health precautions with little to no issue and have, in the majority of countries, seen cases declining by the day as a result.

You simply do not see the largely hostile and combative anti-mask sentiment to the scale and degree elsewhere that you see in the United States. Only in the United States are we seeing such a ridiculous and reoccurring blowback against common sense during a viral pandemic that has frequently escalated to rage-fueled outbursts and outright violence, with people even being physically assaulted simply for asking others to comply with restrictions and regulations. Only in the United States are we seeing the virus being widely politicized, regularly used and abused to garner people’s five minutes of internet fame at the detriment to other people’s lives. And only in the United States is a bonafide medical condition being used as a catch all scapegoat to garner all the blame for the bad behavior of these self-centered individuals. With mental illness being a worldwide problem, if this abhorrent behavior was truly a direct result of mental illness, these outbursts would surely be widespread worldwide, as well. But this type of disturbing behavior is predominantly an American thing, driven not by mental illness but rather the largely American desire to become famous or infamous by any means necessary, even if it means putting other people at risk.

Whenever a woman shoves her cart through a grocery store while defiantly refusing to wear a mask, recording herself screaming about her rights to do as she pleases other people be damned, or whenever a man records himself causing a scene by screaming that he is under attack in a store because he was asked to either mask up or leave, or whenever a woman video records herself violently attacking a display of masks while proclaiming she has had enough with the pandemic and being told what to do, it goes viral because people cannot fathom others behaving so ridiculously, screaming like petulant toddlers throwing a temper tantrum because they were asked to be considerate of the health and safety of others. As long as these people continue to trend as train wrecks that other people laugh at for their sheer absurdity and willful ignorance, there will continue to be people out there acting out just for the attention that going viral brings. While we cannot stop those people from behaving badly, nor can we stop others from watching their ridiculous outbursts with abject horror, we must stop assuming their behavior is automatically caused by mental illness instead of simply being the result of attention-seeking, arrogant, apathetic human beings desperately chasing their 5 minutes in the spotlight. Often, bad behavior directly correlates to inconsiderate people who care only about themselves, not to mentally ill people. We don’t deserve to be scapegoats for their poor behavior.

1. https://www.nami.org/Blogs/NAMI-Blog/October-2019/Six-Myths-and-Facts-about-Mental-Illness

2. https://www.prisonpolicy.org/graphs/pie2020.html

3. https://namibuckspa.org/education/about-mental-illness/facts-figures/

4. https://www.nimh.nih.gov/health/statistics/mental-illness.shtml

5. https://www.who.int/whr/2001/media_centre/press_release/en/

We Should Not Be Afraid To Embrace Our Happiness

I have been struggling a lot this past year, mostly fighting bureaucracy and red tape.  Unfortunately, the more heavily the battle weighs down on me, the more it bleeds into and invades every aspect of my life, particularly my writing.  The more anxious I feel about the possibility of losing my battle, the more I find myself writing about how harshly anxiety affects my life. The more depressed I feel about the struggles I am having getting my disability case fixed and open, the more I write about the negative impact of depression.  That is because I write what I feel and unfortunately, when someone has struggled with mental illness their entire life as I have, my words often emulate the negativity and hopelessness felt inside.

But please know that DOES NOT mean I never experience any happiness or that I am not allowed to be happy because I have a mental illness.  Having depression doesn’t mean you’re forbidden from ever experiencing happiness.  Finding a reason to smile or to laugh when you can DOES NOT take away or in any way minimize your struggles or your diagnosis.

I honestly don’t know why so many people expect mental illness to be an absolute, all or nothing diagnosis.

Someone can have arthritis so horrible that they often stay home because it hurts too badly to move, yet still have days between flare ups where they might go for a walk around the block in the sunshine or plant a few flowers in their garden.  People applaud them for their strength for being able to still do things that they enjoy.

Someone can be fighting cancer and lie in bed for weeks, too exhausted to do anything in between their chemo treatments.  When they manage to pull themselves up to sit, talk and laugh with a friend while catching up over a cup of coffee, people cheer them on.  People applaud them for being able to set aside their pain and their struggles for even a few moments to enjoy the world again.

For any other visibly debilitating illness or health struggle, people receive overwhelming support and accolades for managing to embrace even a momentary slice of happiness in the midst of their battle.  They’re commended for their great strength just for still being able to smile.

Yet, for anyone struggling with mental illness, anything even remotely resembling even momentary happiness is met with accusations.  If someone smiles, laughs or talks about having a pleasant time or a good day, people swarm in to attack, assuming we must have been exaggerating or outright faking our illness because in that specific moment we “look just fine”.

They post rude comments on pictures we share where we’re smiling that we “don’t look very depressed to them”.  When we talk about enjoying a few hours out with family or friends, they throw out snide remarks about how they thought we “had too much anxiety to do anything” or that our “depression made it too hard to function” yet they saw us out and about, having fun.

Their barrage of comments often makes us feel even more trapped and isolated by our illness.  We are left feeling like we have to hide or make excuses for even momentary happiness, as if it is a forbidden luxury not extended to the mentally ill.  We worry about even having a more functional than normal day, too, because others assume if we can manage something one day, we can do it every day.  We debate with ourselves whether to even mention those sweet few happy moments to family and friends because we want to avoid those “I thought you were past that whole depression thing” conversations that inevitably emerge later on when we mention our illness has flared up again.

We’re supposed to “get help” and “get better”, to “get over everything” and “just be normal again”, but we’re not allowed to experience anything in between that horrible low and that “back to normal” state we’re pushed toward and expected to achieve.  It is even worse if it is a long-term or life-long struggle.  Many of those on the outside looking in can’t understand the ups and downs, highs and lows, the forward progress and backslides we go through, assuming we should be on a straight track from sick back to healthy again.  They claim we seemed “just fine, even smiling” when they bumped into us at the grocery store last month so they figured we were “over that whole depression thing” as if it is some fad we were doing for fun, something they believed we would be over by now.

People can be in physical pain or be struggling with health conditions that make it harder to function and it’s okay.  Even not being able to work is considered acceptable because others can see the pain.  Those momentary bits of happiness are seen as a wonderful treasure for someone who needs and deserves it after the battle they’ve been fighting.

Just because you can’t see my mental illness does not mean I am not struggling with it.  It does not mean that I am not fighting just as hard to function and to be as healthy as possible just like others with illnesses you can see.  And I refuse to relinquish the little pieces of happiness that I experience just because others assume that, in order for my depression to be genuine, I must be miserable and suffering every hour of every day without break or end.

The truth is that, no matter how bad I am struggling on any given day, no matter how hopeless my world feels, I try to seek out at least one reason to smile every day.  I have been told that I am the sweetest, most upbeat depressed person many people have ever met because I fight very hard to be optimistic and not give up hope.  I refuse to drown in my mental illness.  I have waged war on it and every single day I strike, reminding myself that there is still good in the world, beauty all around me, that there are still reasons to wake up in the morning and things to be grateful for in my life.

I strive to create good moments and memories whenever I can, to find reasons smile and laugh.  We have family movie and game nights.  I snuggle up with my partner and  watch movies together or laugh at silly animal videos online.  Though I struggle most days to socialize outside my house because my mental illness causes me to naturally isolate myself, I manage to joke here and there with friends online and share funny stories and memes.  I even occasionally go out, whether to enjoy some time out while the weather is nice or to spend a little time with family and friends.

None of that negates my diagnosis.  None of that minimizes my struggles.

It is no different than what someone with one of hundreds of different visible illness does to try and bring some joy into their lives to distract themselves from the pain.

It does not change the fact that the majority of the time I struggle to even pull myself out of bed or to eat.  It doesn’t change the fact that I spend most of my life struggling to even function, overwhelmed and crying.  It doesn’t change the fact that my illness is still always there, right under the surface, beneath that smile, silently eating away at me, trying to drag me back down.

I won’t apologize for my little bits of happiness and I won’t stop seeking them out.  I need them for morale and for my own self-care and sanity.  I need to seek out happiness in this world wherever I can find it so I have a reason to keep going and not give up even when my mental illness makes the world feels hopeless.

Being able to sometimes smile and laugh or enjoy part of your day when you’re struggling with mental illness shouldn’t be treated as a cardinal sin.  It should be applauded as a sign of strength and self-care.  Having a mental illness should not mean that you are never allowed to be happy again.  It is not an absolute, all or nothing, you either have depression or happiness, choice.

If we manage to find a reason to smile or laugh for even a brief period in our day, please cheer us on for our ability to do so.  Don’t rain on our parade just because you cannot see our pain or understand our illness.  Any smile, any momentary happiness is a victory against an illness that is intent on dragging us downward into misery and despair.  Don’t try to take that victory away from us.

To those who managed to smile or laugh today, good for you!  Keep fighting the good fight and don’t ever let anyone else make you feel like you’ve done anything wrong by being happy because you haven’t.  Embrace your happiness.  Cherish it.  You deserve it!

Stop Blaming the Entire Mental Health Community Whenever a Senseless Tragedy Happens

Mass shootings are commonplace in the United States these days.  One community has barely had a chance to mourn and bury their dead before another incident appears somewhere else on the map.  After the school shooting yesterday, a jaw-dropping statistic began to appear across the internet: In the U.S., there has been a gun incident at a school every 60 hours so far in 2018.  That is one every two and a half days.

Everyone is so quick to point fingers and lay blame.  One of the biggest scapegoats is the mentally ill.  Mental illness has become a dirty word.

When someone does something senseless and tragic, one of the first things you hear is that it wouldn’t have happened if not for better mental health treatment.  When there is a shooting, people question how someone who was mentally ill had access to guns.  When someone drives a vehicle into a crowded area or a parent kills their children, people question why someone who was that mentally ill was even allowed out on the street.  People clamor for more laws restricting the rights of the mentally ill for the protection of communities at large.  Politicians respond by shouting promises that there will be change in lieu of this mental health epidemic.

As someone who has struggled with mental illness my entire life, what I see are torches and pitchforks, what I am hearing is one step away from “lock all the crazies up for the safety of everyone else!”  It is a slippery slope.

Please know that I am in no way disputing that those people who commit senseless atrocities like mass shootings have severe mental issues and are desperately in need of help.  What I am saying is that mental illness exists on a broad spectrum.  Mental illness is  term to describe a wide variety of conditions that originate in the brain.  The scope of mental illness extends from diseases of the brain to diseases of the mind. Also, please know that there is a distinct difference between the majority of mental illnesses and the behavior disorders that sociopaths and psychopaths fall into.

Everyone suffering from a mental illness is not the same.  The Diagnostic and Statistical manual, or DSM, is published by the American Psychiatric Association and is used to diagnose mental illnesses.  The current APA list has around 400 different diagnosis, covering a wide range of mental, emotional or behavioral disorders.*

Yes, there are people that are mentally ill that are violent and commit unspeakable acts.  It might even be fair to say that someone has to have something wrong in their head to even be able to carry out anything as heinous as a mass shooting.  But the majority of people who have been diagnosed with a mental illness are non-violent.

According to recent statistics from the National Alliance on Mental Illness, or NAMI**, 18.5% of adults in the United States, over 43 million people, experience mental illness every year.  If a mental illness diagnosis alone was enough to determine a person was dangerous and likely to commit violent acts, with 43 million people suffering from mental illness every year, the numbers of violent crimes would be astronomical.

With millions of people in prisons across the United States and over a million more being sentenced each year to incarceration***, you would assume that prisons would be a hotbed of mental illness.  However, again according to NAMI statistics**, only 24%, not even one quarter of inmates, have had any recent mental health diagnosis.

The fact is that a recent study published in the American Journal of  Public Health shows that a person with mental illness is far more likely to be a victim of violence than the perpetrator****.  Based on this study’s statistics, almost one-third of adults who have been diagnosed with mental illness had been victimized in some way during the previous 6 month period, with over 40% being victimized multiple times.  Of the 23% of mentally ill persons in the study who had committed any sort of violent act in the previous 6 months, roughly 2/3 of the violence had occurred in a home or other residential setting.  A meager 2.6% of violence occurred outside the home in a school or workplace environment.  The most startling fact to come to light in this study, however, is that the victims of violence were 11 times more likely to commit violent acts themselves afterwards.

Yes, something has to be done in regards to mental health treatment in the United States.  But it is NOT because the mentally ill population is inherently violent and unsafe to wander the streets unrestricted and unregulated.  Mental illness and the way it is regarded in this country is a societal epidemic.  Those who have been diagnosed with mental illness must deal with constant stigma.  We are ostracized as being crazy and unbalanced, simultaneously a joke to be mocked and a dangerous monster who needs to be locked up for their own safety and the safety of others.  We often hide our diagnosis for fear of judgment or minimize our struggles to reassure others they have nothing to fear or worry about.

The way a mentally ill diagnosis is handled in this country has to change.  We need to be able to speak up, speak out and receive the treatment we need.  Though NAMI statistics show over 43 million people struggle with mental illness each year, only 41% have received treatment for their condition**.  Roughly one-fourth of the disability applications for Social Security list mental illness as their primary impairment.  Though NAMI statistics** show that 9.8 million people annually experience a severe mental illness that drastically impairs their ability to function, statistics from the National Institute of Mental Health show that only roughly 2.7 million people are deemed eligible for SSI or SSDI*****.  As I can attest, anyone who is applying for disability due to mental illness is advised to get a lawyer and to expect to be denied at least once, if not multiple times, regardless of how much documentation you have for your diagnosis.  Though my mental illness is due in large part to a verifiable genetic mutation I was born with, combined with well-documented trauma, I, myself, have been denied multiple times and still am deemed ineligible by government standards.  For years, I have struggled with red tape, jumping through hoop after hoop, hoping to get the help I need, only to hit brick wall after brick wall, having to begin the process all over again.

The lack of adequate treatment for mental illness in this country has grown rampant.  Suicide is currently the 10th highest cause of death in this country, 3rd highest among 10-14 year olds and 2nd highest for 15-24 year olds, according to NAMI statistics**.  Recently, a video of a disoriented mentally ill woman being cast out on the street by a hospital staff has gone viral.  According to the National Coalition for Homelessness, between 20-25% of the homeless population suffers from “a severe form of mental illness”********.  Mental illness is listed as the 3rd highest cause of homelessness.  People are falling through the cracks, wandering the streets untreated, people are dying, our children are dying, and yet nothing is being done.  The lives of the mentally ill are one by one becoming nothing more than statistics.

It should not be so hard to get help in this country.

There are others who are afraid to reach out for help due to government restrictions on the mentally ill.  There is an epidemic of mental illness and substance abuse among our military.  According to the APA, almost one-fourth of our soldiers, up to 24.4%, are struggling with mental illnesses such as PTSD******.  A recent study published in Science Daily from The University at Buffalo observing the mental and physical effects of law enforcement determined that not only was PTSD and depression a substantial issue, but nearly one quarter of police officers admitted to suicidal thoughts, much higher than the 13.5% of the general population*******.  And these are only the statistics of those who have willingly come forward seeking treatment.  Due to the push for politicians to pass laws regulating gun ownership, a mental illness diagnosis could result in losing the right to even own a gun.  How do we encourage our soldiers and police officers to get the help they need when it could mean giving up their livelihood in the process?

I personally know many people who are afraid to have a record on file about their struggles with mental illness.  They are people who hunt for recreation and are legitimately afraid that a diagnosis would take away their 2nd amendment rights and their ability to feed their families.  They are people who fear a diagnosis would negatively impact their career or their ability to advance due to the stigma attached.  They are people who have seen firsthand how poorly the mentally ill are treated in this country and do not want to be labeled as crazy and unbalanced, as well.  So instead, they suffer in silence, without treatment, until something cracks and breaks.

Yes, there is a mental illness epidemic in this country that is leading to horrifically tragic events.  But it is NOT due to people with mental illness having access to guns nor is it due to mentally ill people wandering around free and unfettered.  It is a direct result of society’s treatment, and lack of treatment thereof, of the mentally ill population.  Please take a second again and consider the facts.

Fact: Over 43 million people every single year struggle with mental illness**.

Fact: Only 41% of those with a mental health condition have received medical help for their condition in the last year **.

Fact: One third of people with a mental illness are victimized and abused every six months and those who are victims of abuse are eleven times more likely to commit a violent act themselves****.

We desperately need to change how mental illness is viewed and treated in this country.  The mentally ill population does not need more restrictions and regulations.  We need more access to health care, better support and protections.  We need assurances that it is okay to seek help and guarantees that the millions of us with a mental illness diagnosis will not all become vilified due to the actions of a minute few.

We need the stigma and persecution to end and the help and healing to begin.

That is the only way that things can change.

Republished on The Mighty on 2/20/18.

* AMA literature with the DSM codes for the broad spectrum of mental illnesses can be found at:  https://dsm.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425596

** NAMI’s Mental Health by the Numbers statistics can be found at:  https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers

*** Bureau of Justice Statistics page that provides incarceration numbers can be found at:  https://www.bjs.gov/index.cfm?ty=tp&tid=11

**** Study entitled “Community Violence Perpetration and Victimization Among Adults With Mental Illnesses” can be found at:  http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2013.301680

***** Statistics from National Institute of Mental Health can be found at:  https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2015/mental-health-awareness-month-by-the-numbers.shtml

****** APA Statistics on Veterans can be found at:  http://www.apa.org/advocacy/military-veterans/mental-health-needs.pdf

*******Study on Law Enforcement done by the University of Buffalo, published by Science Daily can be found at: https://www.sciencedaily.com/releases/2008/09/080926105029.htm

******** The National Coalition for Homelessness report on Homelessness and Mental Illness can be found at:  http://www.nationalhomeless.org/factsheets/Mental_Illness.pdf

Victory is Mine! Fighting for & Winning Coverage is Possible!

I was recently contacted by someone from My Patient Rights. They are a nonprofit helping patients learn their rights, navigate their health plan and ultimately how to become their own advocate.  They had read my story about fighting for coverage when it had been republished on The Mighty and contacted me, interested in hearing how my battle was going.  When I informed them that I had won my fight against the insurance for coverage, they asked me to write a piece, sharing my story.  The following piece was written exclusively for My Patient Rights in hope that sharing my story might give others the courage and strength to fight for the coverage they need, as well.

I’ve spent my entire life struggling with severe depression.  I felt broken.  Others treated me like I was unbalanced, unhinged and crazy.  No treatment or medication I had tried worked.  While the majority of people suffering from depression could pinpoint the event or period in their lives that was the catalyst for their illness, mine had always been there and nothing seemed to help.

Everything changed for me when my doctor discovered that I was born with a genetic mutation.  This mutation renders my liver incapable of breaking down folic acid to any usable degree.  Though this genetic mutation exists in varying degrees, mine is an extreme case, where my liver is working at approximately 20% of its potential.  Broken down folic acid is what the brain uses to help transport the chemicals needed for functions such as balancing moods.  Without it, no amount of chemicals, whether naturally made or taken in the form of an antidepressant, could get where they were needed.  At best, my brain was receiving 20% of what it required.  My lifelong depression was a result of my brain being literally starved of the nutrients it needed.

This changed everything for me.  I wasn’t crazy after all.  My mental illness had a definitive biological cause.  Even more importantly, there was a treatment available, capsules of broken down folic acid, called l-methylfolate.  There was a company that manufactured capsules of already broken down folic acid under the name Deplin.  For the first time in my life, there was actual hope.  With this medication, my brain could finally get what it has been missing.  While the medication I needed wasn’t extremely expensive, it was beyond my financial means.  It was a medication I would need for the rest of my life and it would cost thousands of dollars every year.  The only way I would be able to afford the continued medication I needed would be for my health insurance to cover the majority of the cost.

My doctor started me on some samples of Deplin while we waited to hear back from the insurance company that my medication would be covered.  While it was not a panacea, I could feel a distinct difference inside almost immediately.  While my condition would not be cured by taking this prescription, it would be greatly improved and would open the door for other treatments to be used successfully for the first time ever.  With Deplin, my depression was feeling more manageable, my moods higher and more stable than they had ever been.

It seemed like a simple fix, cut and dry.  The brain needs broken down folic acid in order to balance moods and combat depression.  My body, on a genetic level, was incapable of breaking down folic acid in any usable amount.  A pharmaceutical company made a capsule of broken down folic acid that would provide my brain with what my body could not make on its own.  You can imagine my surprise when the insurance company denied my coverage.  Positive that it was an error, my doctor and I resubmitted my claim.  Again, it was denied.

The reasons for the denials were ludicrous.  The first denial stated there was a “less expensive, alternative treatment”.  More specifically, folic acid tablets.  The folic acid tablets that my body was incapable of metabolizing due to my genetic mutation.  The second denial was even more ridiculous.  CDPHP denied coverage of the medication deemed necessary by my genetic test because they questioned the validity of the test itself.  The insurance company had covered the genetic testing because they believed it to be necessary to my treatment, yet refused to acknowledge the results of the test or the treatment deemed necessary based on the test results.

My first appeal was rather informal.  Speaking on the phone to an in-house doctor, explaining why I felt they had made an error.  During the conversation, the doctor I was speaking to seemed both sympathetic and understanding.  They understood why the folic acid tablets suggested would not be a viable option.  Once again, I thought it was cut and dry, easily resolved.  After all, the doctor seemed to not only understand, but to agree with all I was saying, as well.  When the second denial came back questioning the validity of my genetic testing itself, I knew I had to step up my game.

I contacted the lab that did the genetic testing and spoke directly to technicians, gathering information about the testing itself.  They provided me with case studies showing the benefits of their testing in mental health treatment, as well.  I also contacted the pharmaceutical company that manufactures the broken down folic acid tablets.  With their help, I gathered multiple articles discussing not only my specific diagnosis but the use of their product in treating it, as well.  Altogether, I submitted over one hundred pages of research to CDPHP for my second appeal.  It took less than three hours from the point that the last paper was faxed to their office for me to get the phone call from CDPHP.  Denied again.

I was beside myself.  There was no way that anyone at CDPHP could have reviewed even a portion of the material I had faxed in before issuing their denial.  There was no alternative treatment available.  My depression would not go away on its own.  No antidepressant could work because, without the broken down folic acid, there was no way it could get where it was needed.  Meanwhile, my doctor’s supply of samples was quickly running out.

I was in an absolute panic.  My last ditch effort was a final appeal with the state.  Turns out, health insurance companies are monitored by the government.  A final no by the insurance company is NOT the final no.  You can go above the heads of the insurance company and have your state review their decision.  And that is precisely what I did.

Once again, I faxed out all the research I had compiled, both on my own and with the assistance of both the lab and pharmaceutical companies involved with my case, over one hundred pages.  In addition, my doctor found medical journals that addressed my specific condition and treatment in detail to submit on my behalf.  I was cautiously optimistic.  After all, I had submitted the majority of this before, believing it was all cut and dry,  only to have it denied.

It took weeks to hear the result because it was not considered a life or death situation so the appeal could not be expedited.  My supply of samples had run out.  I could feel my depression spiraling back down into the darkness that had succumbed me for years.  This final appeal was my last and only hope.

After what felt like an eternity, I received a huge packet in the mail from New York State Department of Financial Services, the government agency that oversees external appeals.  My appeal had been sent out to Maryland for review.  An independent doctor, with a long list of credentials and no affiliation with either my insurance company or my state, had deemed inequitably that my prescription for Deplin was not only medically necessary but the only treatment currently available for my condition.  CDPHP’s denial was overruled.  They would have to cover my medication.

It felt like a miracle.  All in all, it took approximately one year’s time from the discovery of my genetic mutation to the results of my final appeal arrived in my mailbox.  It took almost three months longer before CDPHP began finally actually paying for my medication.  In the grand scheme of things, my entire fight took a little under a year and a half.  In reality, it should never have happened.  It should have been a cut and dry case of my receiving the only treatment available on the market for my condition.  It is devastating to think that our insurance coverage often comes down to keeping their costs down and not what is best for our health.  But if I have learned one thing from this experience, it is that we do still have power.  The story does not end when our insurance company tells us no, that they will not provide necessary treatments.  Insurance companies have to answer to outside government agencies with more power and the authority to overrule their decisions.

We can fight.  And we can win.

Don’t lose hope.  Don’t take no for an answer.  If you need treatment and your insurance company refuses to cover it, that is not the end.

Fight for your health.  Fight for your right to have the treatments you need covered.

It may just be the most important fight of your life.

Written Exclusively for My Patient Rights on 11/3/17.

Previous pieces written about my fight for coverage include: Fighting for My Mental Health, The Meds Crash.. and The New York State Appeals Process: Apparently Not Everyone Who The State Certifies To Prescribe Medication Is Considered ‘Educated Enough’ To Defend Their Patients’ Prescriptions During An Appeal.

The Purrfect Medicine: Separating The Myths From The Truth About Having An Emotional Support Animal

I have a pair of sugar gliders.  They’ve been with me for over six years, since they were eight weeks out of pouch.  For those who do not know what sugar gliders are – they are small marsupials that can live twelve to fifteen years and bond closely with their owners.  I have brought them many places in their bonding pouch, from stores to museums to farmers markets and parks.  They have helped me through many mental and emotional hurdles over the years.  Having them with me gives me a sense of peace of mind and security, helps lower my stress levels when my anxiety rises and makes it easier to recenter myself when my depression begins to spiral down out of control.  Having my furbabies with me makes my mental illness more manageable.

When my life fell apart and I had to move last year, I had a very genuine fear that whatever place I found might reject my sugar gliders because they did not know what they were or did not allow animals.  I had heard that having your animals registered as emotional support animals would help protect against that, so I began researching what I needed to do.  What I discovered along the way is that there is a ton of misinformation out there.

Myth: For a nominal fee, anyone in the United States can go to one of a handful of sites and pay to have their pet legally registered as an emotional support animal, even receiving a specially printed certificate.

Emotional support animal registration sites are a scam!  The certificates are literally not worth the paper they are printed on.  Registering an animal as an emotional support animal does not cost anything.  The only way in which you legally register your animal is by having your primary care physician, psychologist or psychiatrist write a letter deeming that your animal is needed for your emotional and mental well-being.  They do not even have to include your specific diagnosis – just that you are under their care and they believe having the pet is beneficial to your health and losing the animal would be detrimental to your health.  It is THAT simple.

A sample letter for your doctor to write, registering your emotional support animal, can be found HERE.

Myth: Only certain animals can be emotional support animals and they must be specially trained in some way.

Unlike service animals which have rigid guidelines as to what animals can be considered one, virtually any pet can be an emotional support animal.  They do not need any type of training because they are there as companions to help with your emotional and mental state.  Once again, the ONLY thing you need for your pet to become an emotional support animal is a letter from your doctor deeming they are necessary for your well-being.  It does not matter if they are a cat, a snake, a hedgehog, a lizard or a horse.

Myth: Emotional support animals can legally go anywhere that other service animals can go.

Laws regarding emotional support animals vary by state.  Some states, such as New York where I live, don’t even recognize them in state laws and refer to federal guidelines with regard to housing.  Emotional support animals are NOT the same thing as a service animal such as a seeing eye dog that has been specially trained to perform specific tasks for their owner.  As such, they are not always awarded the same rights as service animals.  Don’t assume you can bring them out everywhere with you because your doctor has deemed them necessary for your mental and emotional well-being.  Do your research to find out what your state allows.

For example, New York guidelines on emotional support animals can be found HERE.  As stated in the brochure, New York differentiates between service animals and emotional support animals, deferring to federal fair housing guidelines in regards to emotional support animals.

Myth: A landlord has the right to deny me if they do not allow pets in their buildings or if my emotional support animal has not received any formal training classes.

Federal HUD guidelines include emotional support animals with service animals with regard to housing and state that a landlord cannot deny housing for an emotional support animal.  It further states that an emotional support animal is NOT considered a pet and does not require any training.  Furthermore, breed and size limitations do not apply to emotional support animals.  The landlord can request to see documentation from your doctor specifying your animal is an emotional support animal but is not entitled to access to your medical records or specific diagnosis.  Regardless of whatever your individual state laws might be on emotional support animals, federal law surpasses state laws on the matter, meaning that because housing cannot be denied due to the presence of emotional support animals on a federal level, no state can override that right.

Further information on the federal HUD statute regarding emotional support animals can be found HERE.

There are only two situations where a landlord can legally deny your emotional support animal. They are:

• If the landlord lives in the unit, and they or a member of their immediate family have an allergy to the animal.
• If the animal has aggressively threatened someone. (This must be the specific animal in question, and not based on beliefs about their breed or weight.)

The resources that explain these exceptions and your rights if you believe your landlord has discriminated against you based on your need for an emotional support animal can be found  HERE on the tenant resources page.

Myth: Once an animal is considered an emotional support animal, that trumps all other laws.  I can live anywhere I want with them and nothing can be said or done to stop it.

Common sense applies here.  If horses are not allowed within city limits, you cannot get yourself a horse and bring it into your city flat, stating it is an emotional support animal so you are entitled to keep it there.  If your state deems the pet you own is illegal to own in your state or requires a special permit to own, you must abide by those laws just like everyone else.  For instance, there are a handful of states in which sugar gliders are illegal to own.  Regardless of their status as emotional support animals, I cannot move to one of those states and expect to reside there with them.  Please keep in mind that there are also a handful of places you may not be able to reside with your emotional support animal, such as a hotel or motel because they are not considered traditional places of residence.  However, according to federal HUD guidelines, you cannot be denied housing with your emotional support animal in “public housing agencies and some places of public accommodation, such as rental offices, shelters, residential homes, some types of multifamily housing, assisted living facilities, and housing at places of education”.  Please keep in mind, though, that you must take proper care of your animal and clean up after them just like you would any other animal.

Myth: My landlord says that in order to have my emotional support animal on the premises, I must pay a pet deposit or pay a little extra each month and must prove that my animal has been properly trained.

The federal HUD guidelines prohibit landlords from charging a pet fee for any service animal or emotional support animal.  Nor can a landlord demand any sort of training certificate or place restrictions on the type of animal owned as long as the animal is considered legal in your municipality.  The situation is addressed specifically on HUD’s Q&A page on the matter, labelled situation one, which can be found HERE.

Truth: An emotional support animal can be a very helpful tool in treating many mental illnesses, such as depression, anxiety and PTSD.

I can state this, without a doubt, based on my own personal experiences and the experiences of others I have known who have turned to animals as a coping mechanism for their mental illness.  The benefits of having a furry, feathered or scaly companion are numerous.  Having an emotional support animal if your doctor deems it necessary for your emotional and mental well-being is your legal right in this country.  Registering your animal as an emotional support animal in the United States is not hard or time-consuming and does not cost a thing.  However, both having your animal there with you and having the peace of mind knowing that no one can deny you housing for owning your emotional support animal is priceless.

Republished on SelfGrowth.com on 10/17/17.