It's Hard Enough.

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.