Imagine yourself planning
a wonderful trip to Italy. You plan and prepare and get excited about your
upcoming trip. You pack your bags and learn a few phrases in Italian, and then
you take off. When the plane lands, you excitedly open the door and hear
“Welcome To Holland!” “What? Holland? Um no, excuse me, it was supposed to be
Italy?” you find yourself saying. You didn’t want to come to Holland, and by no
mistake of your own, you’re in Holland. You mourn the loss of your trip to
Italy, but you decide to stay and try to make the best of Holland. You’re
grateful that Holland is fairly clean and you weren’t sent someplace filthy and
full of disease. It’s not Italy, but Holland has some nice things too.
This is the
analogy Emily Perl Kingsley uses to describe what it’s like to raise a child
with a disability. The parents didn’t choose it. The child didn’t choose it.
It’s not really what the parents wanted, but it’s what the parents get. They
mourn the losses the baby will have to grow up accepting. They’re grateful for
what the baby will be able to do normally and they thank God it’s not worse
than it is. It’s not Italy. But it’s what they get. (Kingsley)
The child will grow up with losses and challenges that
they would prefer not to have. The parents would also prefer to have the child
be healthy and capable. They want the best for their baby. It’s hard to watch
someone suffer and not be able to fix it. No one would choose illness over
health.
Some people however, believe that some people would.
Sometimes people’s actions make it look like they choose sadness, suffering,
pain and illness over health and happiness. The world views every action as a
choice. It’s difficult not to, because each individual can only attempt fully comprehend
themselves. There is not a feasible way to understand the thoughts and actions
of another. This public view however, that every action is a coherent choice,
further stigmatizes those with mental and physical illnesses.
Stigma is defined as “a mark of disgrace associated with
a particular circumstance, quality, or person.” Some Synonyms for Stigma are
“shame, disgrace, dishonor, ignominy, opprobrium and humiliation.” (Oxford Dictionary) Stigma means hating
or judging others because of the circumstances in which they live. Stigmatizing
people with mental and physical illnesses means hating certain groups of people
simply because they have less than perfectly healthy bodies. In all reality,
nobody has a perfectly healthy body.
Stigma leads people to believing lies created by the
media and by other people. Stigma can lead people to feeling shamed,
humiliated, unwanted, unloved and hopeless. People who further stigmatization
are furthering prejudice and discrimination. People who feel the awful sting of
stigma are less likely to get help for themselves when they need it. They are
less likely to advocate for themselves. (What is stigma? Australia) Stigma is a negative
way of thinking and a negative experience overall.
“Imagine
you have breast cancer. Now imagine that instead of NFL
football players supporting your illness by wearing sneakers with pink cleats
and pink logos on their jerseys, society blames you for your illness. Imagine
others looking at you with accusing eyes and whispering about you behind your
back when they find out you have breast cancer. Imagine feeling fearful of
seeking proper medical help because you’re afraid you’ll lose your job if
anyone finds out about it.” (What is Stigma? US)
That,
is Stigma.
In the essay, Plague of Tics by David Sedaris, the
author speaks of his own childhood experiences, growing up with Tourette’s
syndrome. He himself felt the burn of the judgment of others. Particularly from
teachers and neighbors. Part of the reason Sedaris was stigmatized, was because
the people around him viewed every action as a choice. They didn’t understand
that he didn’t want to stick his nose to hot cars or bang his own head
with his shoes. He had to. It was “the rules.” He was a slave to the
screams of his brain compelling him to act in strange ways. He understood that
it was abnormal and sometimes even dangerous behavior, but that didn’t matter. It
was “the rules.” It was easier to just do the things he was compelled to do,
rather than dealing with the never-ending lecture of hate and disapproval
coming from his own body that came with ignoring the rules his brain made for
him.
“Mental Health Disorder” is a bit of an umbrella
term. In reality, no two conditions are alike and no two people experience the
same diseases in the same way. Mental Health problems are an emotional grab bag
of symptoms and unknown causes. Disorders can be very mild, or very severe.
Depression is typically seen as more mild than Schizophrenia, but in some
cases, severe depression can control a person and affect their daily life more
than mild Schizophrenia. Mental Health disorders are a never-ending guessing
game for doctors, parents and individuals alike.
When someone is mentally and
physically healthy, they are almost always in complete control of their own
body. Someone like Sedaris, is not in complete control. Even though he would
probably like to be. He had no friends growing up, even though he was very
funny. He didn’t perform wonderfully in school, because he had strange
compulsions and teachers didn’t understand him. He was stigmatized. Left alone.
Pushed aside and forgotten. The people
around him viewed these strange acts as his own choices, rather than the
choices of a disease that he battled every day.
“For many psychiatric disorders, patients that are
symptomatic are frequently making poor decisions about numerous things
throughout the day, such as how they handle their anxiety and other
emotional states,” “If you’ve ever had a friend or family member with
depression, you can see they are not making decisions the way they normally do.
So there clearly has to be dysfunction in the neurocircuits of psychiatric
patients affecting their decisions, and we need to understand this better in
order to come up with better treatments for mental disorders.” (Pederson)
In these cases, circuitry is faulty. When a
computer has a hardware or a software
problem,
it is taken to someone who can fix it. The human brain runs like a computer.
Why is there such a judgmental attitude toward doing something to fix a broken
mind? Why are people so concerned with condemning those who face challenges
that are different than their own? Humans are so concerned with the way that
they are perceived by others. Many people put their own health and the health
of those around them at risk because they are afraid of the judgment of others.
Learning more about mental illness is the first step to breaking stigma.
The human brain is wired to seek
rewards and avoid losses. Humans create rules for themselves based on the world
around them, their goals, religion, upbringing and dozens of other influences.
Great students make rules for themselves about studying. Great athletes make
rules for themselves about practicing. Religious people use the guidelines set
by their church to make rules for themselves. Sometimes people consciously make
rules for themselves. Sometimes they subconsciously make them. Once a set of
rules is in place, then the brain starts learning how to make decisions based
on risks and rewards. But sometimes the rules and risks and rewards get screwed
up. That’s when mental health takes a turn for the worst. (Adams)
“Unlike
their peers, people with anorexia never make the switch from following rules to
flouting danger. If anything, their rules become more elaborate."Imagine
if you had all of those rules and were really afraid of taking risks,"
says Kathleen
Fitzpatrick, assistant professor of psychiatry and behavioral
sciences. "They experience a lot of distress when they don't follow the
rules." That's why [many] people with anorexia continue to do well in
school, sports and other areas, she says. That's what the rules dictate.” “But their rules also dictate strict eating
patterns – and breaking those rules is extremely distressing, even if those
rules dictate unhealthy habits.” (Adams)
When the
rules get jumbled up inside a person’s head, they are making decisions based
on jumbled rules
and risks. Most people who have anorexia, don’t want to starve themselves, but
the rules say that they need to. It is not a coherent choice. They are being
compelled to follow a set of rules they didn’t create or agree to. If you were
to ask someone who has come back from Anorexia, what they learned through
therapy, rehab, hospitalization or whatever it is they used to turn their life
around, they would say that the biggest thing is learning to change the way
that they think. To learn how to make healthy choices for themselves rather
than let a disease dictate their life.
A word that is often thrown around when discussing
mental illness is suicide. Suicide is a dark and scary word that makes people
uncomfortable. It is a taboo topic. No one wants to talk about suicide. There
is a stigma surrounding suicide. People who choose to end their own lives are
judged based on those actions. Because suicide is stigmatized, people who have
suicidal thoughts, hide it. They feel they cannot ask for help without being
judged. They feel shame, guilt and embarrassment for simply having thoughts of
suicide. These feelings often drag them lower.
People who feel they cannot ask for help with their dangerous thoughts
are more likely to continue having them and eventually acting on them.
When a person is having suicidal thoughts, they
have a limited perspective. They cannot think clearly about the future. They
can only see what is right in front of them. No big picture. They cannot
comprehend feeling happy at a later time because their brain does not have the
perspective to remember how it feels to be happy. This limited perspective
makes it hard to think clearly and make choices. They are unable to see
more options than the harmful ones. People who can see the other
options, choose them. That is why intervention is so important. If people can
be shown other options than ending their own life, they are very
likely choose them. If people can be
reminded of their previous happiness, their perspective broadens. If they can
remember the past, then they can begin to imagine a future. Perspective changes
the risk taking, reward seeking thoughts. If a person can see the possibilities
for future rewards, they can choose to seek after them. (Henick)
Though physical illnesses don’t always accompany
mental illnesses, feelings of depression, anxiety and panic can be major side
effects of physical disorders. People who have physical disabilities are
stigmatized as well. They feel the sting of judging eyes and critical tongues
sometimes just as often. Though often, they are judged for different reasons.
Their circumstances are different. The way people perceive them and their
illnesses are different. The feeling of being stigmatized is the same.
The
Spoon Theory is a piece
written by Christine Miserandino that tells of her own experience trying to
explain what it’s like to live with lupus. Of the limited choices she is
allowed to make based on the circumstances in which she lives. Basically,
healthy people have unlimited spoons. People with physical or even sometimes
mental illnesses, have a limited number of spoons. Everything everyone does
costs a certain number of spoons. But you probably don’t notice that everything
costs spoons, unless yours are limited. Getting out of bed costs some spoons. If
you have a life altering illness, taking your medications costs a spoon. But
you have to use that spoon to take your meds, or you won’t have any more spoons
for that day or for the next either. Getting dressed costs a spoon, doing
chores costs spoons, going to school costs spoons, everything you do has a
spoon price tag. Once you are out of spoons, you’re out. You don’t get any more
spoons until the next day. You have to go home and go to bed and hope you have
at least half a spoon left to change clothes, or at least get your shoes off. (Miserandino)
People whose lives are dictated by illne- er, spoons,
end up canceling plans. They get dubbed lazy, irresponsible and rude. They are
perceived as only caring about themselves. They have to change plans, cancel
plans and reschedule. When someone doesn’t have enough spoons to leave the
house, they can’t leave the house. If someone’s disease dictates that they
can’t stand up for long periods of time, whether they want to sit or not,
whether they appear lazy or not, they can’t stand. It’s not a choice. No one
wakes up one morning and says “I really think I’d really enjoy having a heart
condition.” But some people wake up one morning feeling sick, and never feel
better.
Nancy Mairs is one of those people. In her essay, On
being a Cripple, Mairs discusses the reality of her own experience living
with MS. A degenerative nerve disease. She writes openly and honestly about the
horrors and victories of living with extreme muscle weakness. She writes about
the depression that accompanies her physical disability. Some days her MS literally
knocks her down. More often than not, it is her depression that keeps her
cooped up in bed. Either way, she often ends up feeling judged and secretly
hated by her family and those around her. People perceive her differently than
they do other people, for that reason, she has decided she wants to impress
them. She decided that if she’s going to be a cripple, she’s going to be a good
one. She’s going to be happy and have a good attitude and make jokes about her
disease. Usually, she succeeds with the attitude part, at least in public. Her
depression sometimes runs rampant in her own mind, but that depression is hers
and hers alone. She plays her happy part for other people, but she still is
looked down on when things happen that are beyond her control. She might trip
in a parking lot and make a mess of her clothes. It’s not her fault but others
will secretly think that she needs to be more careful. She might have to cancel
plans because she is too weak to get out of bed. Others think she is lazy. She
is not lazy. She is sick. Her disease prevents her from choosing to have a
normal life.
The world is not a perfect place and it is full of
imperfect people. Sometimes people really do make stupid choices that lead to awful
consequences. This can be the root of stigma. Sometimes people don’t think and
decide to see what happens when they jump off a roof onto a trampoline or put
hot glue on their arm. Other times people choose to try recreational drugs.
People mess up. But people can try again. Just because someone has made stupid
decisions in the past, doesn’t mean they are not deserving of respect and second
chances.
Dr. Jared Bunch wrote an article explaining his
perspective on patient care. One day he was treating a patient that had a
history of drug use that led to a heart condition. Many doctors turned the man
away, or at the very least, scolded him often. The problem with that, is that
he already knew. He already knew and he already regretted it. He was searching
for help, not criticism.
“A person who wore scars on the
outside because of choices he’d made on the inside. These were easily
recognized and pointed out to him by many. He endured being chastised by
physicians during patient care, and in emergency rooms, by other people. Most
of his critics didn’t take the time to look inward and see the good inside him:
the person he really was. His true value as a person was immediately apparent
to me the first day we met, when I spoke to his mother. She knew him on a level
few others did, and she saw his goodness. She was willing to overlook his
outward appearance. If I, as a physician and a person, can see someone the way
their mother or father does, then I believe I’ll always act as a better
healthcare provider and person. My patient’s mother, who endured years of pain
watching her son suffer, taught me this valuable lesson.” (T. Jared Bunch)
The world is not a perfect place and it is full of
imperfect people. But people are still
worthy of respect and love and kindness regardless
of what kind of past they have. Everyone has their own demons to fight.
Sometimes people mess up and make their own plight harder. No one needs the
extra pressure of people looking down on them in the middle of their fight,
regardless of whether or not they chose it. We all have goodness inside of us
and we all have opportunities to show kindness to others. One of the nicest
things that can be done for someone fighting a battle with their own body or
mind is show them kindness. If other people can’t be kind to them, why should
they go to the trouble to try and be kind to themselves?
Many people feel the
effects of physical and mental illnesses every single day. Disease is a looming
demon that many people fight again and again, day after day. Disease limits
choices and the ability to make choices. This is not the fault of those
affected. The idea that it is their fault is based on inaccurate perception.
Stigma negatively affects everyone. Both the person judging and the person
being judged, as well as sometimes even their families, are negatively
affected. The idea that every action is a choice leads to stigma. Stigma often
comes from a place of false information and a lack of education. Sometimes simply
knowing that an illness is present, is enough to better understand the choices
made by an individual. Regardless, everyone is fighting an unknown battle.
Think twice.
