Mental Illness, Schizophrenia and Stigma

by Vickie Robison-Barnett

Stigma ... how do we get rid of it. Since this is a topic very close to my heart and one that I have some very personal experience with, let me just throw out my thoughts.

I have spent a lot of time thinking about the issue of stigma surrounding people with schizophrenia and major mental illness. At one point (long ago) I thought "what a simple answer" -- let everyone who is mentally ill just get treatment and let everyone else just be understanding. Well I learned very quickly many years ago, it is not quite that simple.

Even if affordable mental health treatment were available to everyone and even if everyone else just understood we still have to think about a number of factors that affect treatment of the mentally ill.

1) DENIAL: One of the major symptoms of some mental illness, particularly paranoid schizophrenia, is denial (by the patient) of the illness itself and in many cases the patient has tremendous fear that the helpers are trying to poison or harm them with the treatments and medications.

2) DUAL DIAGNOSIS: How many have ever heard the term "dual diagnosis"? It means that many mentally ill people are also street drug addicts. They attempt to control their symptoms with illegal drugs hoping that the problems, hearing voices and delusions will go away. Self-medication almost always exacerbates the problems of the mentally ill, but it is very common.

3) VOLUNTARY TREATMENT: Mental Health treatment is voluntary. Our system does not presently require forced treatment unless the person has been violent. Violent patients usually end up prison rather than in treatment. Family members who seek help are often turned away and told there is nothing that can be done unless the patient is willing and has insurance to pay for treatment.

4) TREATMENT ABUSE in Mental Health Facilities: We are plagued with a long history of treatment abuse. In the past many people were locked away in very bad mental institutions and the abuse that took place is unimaginable. Many times the families were not aware of what their loved ones were subjected to and the patients were threatened with further abuse if they disclosed to the outside what was going on.

5) LACK OF MENTAL HEALTH FACILITIES: In response to uncovered abuse and a lack of funding, many facilities were closed down and there has been very little effort to replace them with appropriate alternatives. The facilities that are still open are very expensive, especially in-patient care. Even if one has insurance, the coverage is almost always limited. Patients who are chronic often use up their life-time benefits in less than a year. Then what? Only the wealthy can afford continued effective mental health treatment.

It is like walking a tight rope trying to figure
out what exactly is the right thing to do.

I have befriended and listened to the stories of mentally ill citizens who have admitted to their illness and accepted and are in compliance with the treatment process. But that process leaves them feeling as if the illness is a life sentence of doom. Employers will not hire them (too much trouble), no one wants to be their friend (out of fear or apathy), families give up on them (out of desperation and exhaustion).

Far too many chronic mental health patients adopt the street as their home. We all see them walking on the streets and many of us who don't know they are sick think "what a bum". Most of the others who don't have strong families end up on perpetual welfare or disability and live a meek existence with practically no social life which makes their condition worse. Some of the treatments don't always cure all the symptoms and the medications may cause horrible side effects which can lead to other serious medical problems. Our present Medicaid system will not always pay for the newer, more effective and less dangerous drugs to treat indigent persons.

This is why there is still a stigma hanging around after all this time. Many people with schizophrenia and other mental illness try to hide their illness in an attempt to avoid the inevitable rejection by society. Until we all learn to accept these people and lend a helping hand, we are all stuck with the stigma.

Practical, simple things you can do to help a person with Mental Illness to help reduce stigma: (and improve quality of life)

Offer your friendship to a person who suffers from major mental illness

Simple friendship can improve their condition. Be a pen pal, telephone or e-mail buddy to a person who suffers with mental illness. I was once told by a person who has schizophrenia that one of her voices commanded her to stay on the couch all day. Every time she got off the couch, the voices screamed at her until she obeyed and got back on the couch. She was captive all day long to the voices in her head. The simple act of talking to someone who doesn't hear voices and being able to 'check out' reality with a trusted, kind listener can be a major comfort to a mentally ill person. Especially if you remain calm, treat them with respect and do not ridicule them about their symptoms. Always remember that the symptoms are very real to them.
[Yes, I know that this takes away some of your time, and can even be frustrating at times, but I guarantee it will reward you in ways you never dreamed of.

Offer to give a care taker of a mentally ill person the day off

It is an incredibly difficult and demanding task to care for the mentally ill 24/7. Mental health caregivers need time away. Especially those who are caring for a mentally ill person at home. But....even caregivers who work in residential treatment facilites get too little time off due to budget restraints.

Throw away your negative thoughts about a homeless person walking down the street

Many of them are mentally ill and cannot help it and too many have no where to go

Don't complain about your tax dollars being spent to help treat the mentally ill

You or someone you love may need the help someday. Mental Health Treatment takes time & money - lots of it

Volunteer your time once a month (or once a week, if you have the time) to a home for the mentally ill

There are a few residential treatment facilities for the mentally ill but most operate on a very limited budget. One of the biggest problems is providing activities to the residents. They like to have a social life, (going to the movies, shopping, bowling, church, etc) just like anyone else. These homes always need help in providing activities for the residents. If you have a special talent, or just like to play cards and board games offer to do it at one of these homes.

Offer to help a person with mental illness on disability pay for their medications.

DID YOU KNOW that mentally ill people on disability and medicare or medicaid are only allowed three prescriptions per month? Some mentally ill people take up to 15 medications a day, particularly if they have some other physical ailment such as diabetes or heart disease. They do not get additional prescriptions if they have an infection and need antibiotics. Many extra medications are prescribed to overcome the serious side effects of the psychotropic meds. Someone on a fixed income simply cannot afford ALL of the medications that are necessary to lead a more normal life. What happens is they do not take all of the prescribed medications because they cannot afford to buy them. This can very quickly turn into a disaster.

These are obviously not the only things that you can do to help. It is just a start. Use your imagination, and you will discover other ways to help. It takes one person at a time to make a difference. It is a daunting task and many may think that it is hopeless so why do anything, but if everyone would do just one small thing to help, pick one person to help, it can make a huge difference.

Think about it....

Don't wait for someone else to do it. Especially don't wait for the government or the medical community to do it. There is very little real help available. Ultimately the 'best' help will come from the ordinary person who becomes an extraordinary person, when they are willing to devote a little time to help a person with mental illness.

'Everyone is ultimately affected by society's indifference to society's problems.' ~~Vickie Robison-Barnett

10th June 2001
Updated June 10, 2003

Please feel free to pass this along to others you know who may be ready and willing to help: Send this article to a friend(s)