The Effect of Different Perspectives: Are we Communicating Effectively or are we Stigma Coaches?

This week Dr. Sirven shares results of a study that looks at differences between how doctors and patients view seizures. The ‘patient’ groups included those with epilepsy and those with nonepilepsy seizures. I am using the term nonepilepsy seizures to mean events that are not caused by electrical activity in the brain and may have a psychological cause. As recommended by the Institute of Medicine report on epilepsy, I avoid the term ‘nonepileptic’ to stay away from the stigma that is attached to the word ‘epileptic’.

The article demonstrates that the greatest differences were between perspectives of people with epilepsy and nonepilepsy seizures and their doctors.

Why is this important? How we communicate and act is affected by how we think about or view a situation or person.

• The words we use, or don’t use, may stem from our beliefs or perspective. We must all be careful on what words we use as others may interpret them differently. If we don’t agree with another person’s perspective, ask what they really mean by the words they used.

• It’s important to remember that language used by medical professionals is very different from everyday language used by most of us to describe our health, the impact on our lives, and our concerns. Ask your doctor to explain the medical terms he/she is using and why she thinks this pertains to you.

• People with epilepsy and nonepilepsy seizures should also take the time to explain what they mean to their doctors. If a person thinks that a seizure was ‘triggered by’ or ‘caused’ by an emotional stress or physical issue, give an example and what you mean. Factors that can trigger or make a person more likely to have a seizure are quite different from ‘causes’ of a seizure. Both epilepsy and nonepilepsy seizures can be ‘triggered’ by variety of stressors, both emotional and physical. These triggers may not have anything to do with the ‘cause’ of the events.

• Doctors must also explain what they mean by triggers or causes. They may have a different meaning from the patient or family.

• Everyone should think carefully about their feelings towards seizures – both epilepsy and nonepilepsy seizures. Why do so many people have a negative view of epilepsy and an even worse view of people with nonepilepsy seizures or events? Both are health conditions that need treatment, but the causes and treatment approaches are different.

• Keep in mind that just because psychological (emotional) factors may trigger epilepsy seizures or that psychological issues could be a cause of nonepilepsy seizures, it doesn’t mean that the person has personal control over them! Having control over oneself is an important value for many people and not having control can be viewed negatively. Let’s make sure that we don’t project our own values onto others, and that we look at the basis of what control means to us and about others.

• Emotional issues can affect anyone, with or without seizures of any kind. Ideally we all strive to find ways to cope with the emotional stressors in our lives. We may or may not be able to ‘control’ them, however. Learning ways to cope with emotional issues can be very hard and takes time. Often, people aren’t even consciously aware of issues affecting them and it takes time to sort this out first.

• Let’s not rush to judge other people who have epilepsy or nonepilepsy seizures. Stigma is too pervasive already. We should all think about whether we are a ‘stigma coach’ – are we promoting stigma by the words we use, the views we have or actions that we take?

What do you think? Share your thoughts on how people can talk more effectively, compassionately and avoid being ‘stigma coaches’!