A survey conducted by the organization Rethink, opines that out of the 1300 mentally ill individuals they interviewed, about 93% felt that the people around them did not ‘get’ them. Another survey reports that about 3 in 5 people who live with mental illness do not seek support due to the concern about how they would be perceived by others.
In our everyday practice as mental health professionals, we encounter this phenomenon regularly. Clients seek help only when the illness exacerbates to such an extent that it becomes troublesome to either the patient or the family. Parents and relatives deny the presence of the illness for as long as possible lest it destroy the ‘future’ of the patient, use the illness as a tool of emotional blackmail to enforce certain decisions on them(mostly marriage) and inadvertently undermine their confidence in an attempt to save them from imagined disgrace.
This is such a tangible feeling that patients end up believing that they are lacking in some way or that it is their fault for having the illness. Oftentimes, when I point out to them that they did not ask for the illness and hence should not be guilty or ashamed, they look at me as if they were hearing this fact for the first time.When I ask them whether they would be ashamed of having a runny nose or a fever, they laugh and admit that they wouldn’t….but this is different.
This got me thinking as to why there are some illnesses that we are agreeable with and a few that we are horrified to be seen associated with. Eg. tuberculosis, leprosy, vitiligo, HIV, covid, mental illnesses, disabilities etc.. Why do these illnesses carry with them the additional burden of stigma?
The origin of the word stigma comes from Greek and Roman societies, where it was used to describe the tattoos and branding done for slaves and criminals, a visible testament to their marginal social status or deviation. Basically, to point out that they were different from the norm and hence not fine to associate with.
Stigma regarding an illness is a result of multiple causative factors.
- Fear:
Fear is one of our primary emotions. As we evolved, we probably stayed alive because of fear. We could think harder, better and protect ourselves because of it.The same fear also tells us to stay away from anything about which we do not know, so as to limit harm. Therefore, when we are ignorant of the cause of any illness,its treatment or associate some superstitious belief to it, the resultant fear causes stigma. A classical example of this was seen when people were so fearful of covid that they refused to help their ill neighbors for the fear of contracting it.
2. Unattractiveness.
We live in an age and time where the beauty industry is one of the fourth biggest in the country. Starting from advertisements which promise eternal youth and skin and hair care treatments which burn the pocket in the pursuit of a wrinkleless face, we, as a society, put too much premium on how we look. There are also unspoken laws about how a person gets defined as beautiful. If someone, due to an illness or condition does not happen to fit into this box, we tend to look at them like outcasts. This is commonly seen in people suffering from skin diseases like vitiligo or conditions such as obesity, physical deformities etc.
3.Association
We are usually judged by the company we keep. Hence keeping company with anyone who does not fit the bill of the right, able and beautiful is usually looked upon with suspicion. Hence, we see that people with gender identity issues get bullied or marginalized.
4. Values and belief systems
Our values and belief systems have been built over the ages. When knowledge was scarce certain belief systems may have helped. But if they do not evolve with an evolving ecosystem, they can increase stigma. Belief that touching a patient afflicted with leprosy or vitiligo will cause the illness to spread is a still popularly believed myth.
5. Wrong representation in the media.
A lot of times, we see that movies or television programmes depict illnesses wrongly. People with obesity, intellectual deficits, speech difficulties and the LGBTQ community are used as comic relief.The way they dress, behave and think have been caricatured. They are always troubled by others. Mostly, the research about the ailment is not even correct. For example,people with mental illness are shown to be given electro convulsive therapy (ECT) as a punishment! Watching such content causes people to form unconscious biases about people with illnesses and its treatment.
With increasing awareness, we have come a long way in reducing stigma but still have so much more to do. So, how do we move on?
- By educating ourselves.
Education is both the most obvious and subtle ways of changing our thinking process.When we teach children value education, including stigma and its after effects in the curriculum can go a long way. If we are taught early that people can be different but still be a part of our society, we may imbibe the sentiment and practice it.
2. By talking openly.
We are always curious about what is hidden from us. Anything mysterious becomes fodder for inaccurate gossip. If we start talking about the illness or condition openly it becomes normal. And natural. As if we were discussing a cough or a cold. When there is no mystery, there is no confusion either.
3. By learning not to define a person with their ailment.
We should not define the individual with his/her illness as it is only a part of him. We never call a person a heart attack or a diabetes, so why call him mental or leper? We need to be concious of the language that we use. When we assume that whatever afflicts an individual becomes their personality, we make errors of judgment. We must try and look at the other aspects of his/her personality which would help the person integrate with us.
4. By teaching the victim self confidence.
Most people who suffer stigma, have an innate sense of underconfidence. Teach them to be aware of it and work at reducing it. If Arunima Sinha could climb Everest with prosthetic legs and John Nash could win a Nobel with his schizophrenia, then every person has some potential that could be tapped for his or the world’s benefit.
5. By working with the media to improve the portrayal of persons with difficulties.
I recently watched the movie “Bawaal”. I was impressed with the way it dealt with stigma. The female lead in the film suffers from epilepsy. The girl explains this to her prospective groom, is unapologetic about her illness and comes through as a self confident individual despite this. She has full support from her parents to divorce when her husband behaves badly. This was refreshing to watch because I see the opposite in my practice everyday! If more mainstream movies concentrate on issues such as these, we could learn from it. If experts in the medical field are consulted when movies are made, it may make for a more sensible viewing experience.
We all know of or have interacted with people who suffer from illness or disability. What we do not see is the pain behind their smiles, the compromises that they have made and the challenges they face everyday. Making ourselves aware, will surely help us to empathize with them and reduce the stigma that they face.
