How do we become aware of the sensations of illness?

When someone is ill, it causes (visible) changes in the body. Someone remarks that you look pale while you didn't notice anything yet. Often, however, illness causes characteristics that are quickly noticed by the ill person. Examples are changes in bodily functions (for example, having to pee more often), sensations (eg, reduced vision or sense of smell), unpleasant sensations (eg, pain, fever, and nausea), the appearance of the body (weight loss or weight gain), and physical function (e.g., fainting) .

A characteristic or a change is not necessarily a symptom. A characteristic is in fact something, but before you can call something a symptom it must first be interpreted. You can detect an elevated body temperature, but before you think about a fever it is useful to first check whether the increase is not due to sports, the environment, warm clothes etc.

Illness or disease?

There is often confusion about the words 'illness' and 'disease'. Often the words are used interchangeably, but there is a subtle difference. Illness is what someone feels, the complaints with which he goes to the doctor. Disease is what is wrong with organs, cells or tissues.

What does the perception of symptoms entail?

When someone is getting sick, there are three phases that have to do with recognition:

1. noticing symptoms;

2. interpreting the symptoms as a disease;

3. plan and take action.

Although everyone sometimes suffers from symptoms, we do not go to the doctor for all ailments and aches and pains. Some symptoms even go unnoticed, or hardly paid attention to. The Pennebaker (1982) attention model describes how competition for attention between different internal or external cues or stimuli leads to the same physical signs or physiological change immediately being noticed in some contexts, but not in other contexts. The cognitive-perceptual model of Cioffi (1991) focuses more on the processes of interpretation of physical signs and influences on attribution as symptoms, and on the role of selective attention. There appear to be biological, psychological and contextual influences on the interpretation of symptoms. In general, a symptom receives attention from the individual dependent of when it is painful or disruptive, new or persistent. People with a chronic illness more often notice symptoms and also report them more often.

Individual differences in symptom perception arise because people give different attention to their internal and external characteristics. People who are very focused on the external appear, notice internal symptoms less quickly. How quickly someone is distracted from other (external) issues also plays a role. At the end of a lecture, more and more people notice the jitters in their throats, causing more and more coughing.

When many people have a particular illness, when an illness is in the news or when people read or learn something about an illness, it increases the attention for symptoms associated with that illness. An example is medical student disease. Students who are going to study medicine or psychology initially think that they have everything because they recognize symptoms in themselves. However, it often appears that they have overestimated their complaints and that fear played a major role.

Social influences

Individuals have stereotypes about who gets which disease. This can change the perception and response to symptoms. Most people associate men with heart problems. Among the female heart patients, the early symptoms are either often not recognized.

The context and the time when symptoms occur largely determine our motivation to pay attention to or detect symptoms. If the environment of an individual is incredibly interesting and distracting, symptoms will be less likely to be detected than if the environment is dull. During labor, muscle cramps are not seen as symptomatic, but they are seen while watching TV.

Individual differences affecting symptom perception

• Gender: women often pay more attention to physical symptoms than men and they also see physical changes as a symptom. It is possible that physiological differences influence the pain threshold, but it is also possible that the observed differences reflect behavior (coming out with the complaint) and not the symptom perception itself. Another possible influence is that it is more socially acceptable for women to come out for their complaints.

• Age: age probably has a fairly large influence on how people deal with symptoms and how they interpret them. As someone gets older, he has more information about his own body. He now knows what is normal and what is not. On the other hand, the symptoms also change as someone gets older.

• Emotions: the mood of an individual is quite important when it comes to health. People with a good mood see themselves as healthier and say they have fewer symptoms than someone with a bad mood. People with a bad mood think they are vulnerable to diseases or think pessimistic about relieving their symptoms. Depressed people pay more attention to their symptoms and manage to list more negative health events from the past. Anxiety causes individuals to ignore symptoms out of fear or to pay extreme attention to their sensations. Neuroticism means, among other things, that someone has a tendency to experience negative emotional sensations and is related to 'negative affectivity' (NA). Someone with a high score for NA traits often interprets the symptoms more negatively and these interpretations lead to more frequent visits from health authorities.

Cognitions and coping style

The way in which people respond to internal and external events also appears to influence symptom perception. The so-called type A behavior (TAB), characterized by impatience, competition and aggressiveness, appear to be less likely to notice symptoms. This is probably because they are primarily focused on the things they should do and because they prefer to ignore signs of weakness.

People who tend to suppress the associated feelings and thoughts during aversive events are also less likely to realize that they have something. This repression is again associated with unrealistically optimistic (comparitive optimism). So-called monitors pay attention to the source of their symptoms and immediately try to do something about it. Opposite behavior is shown by the blunters who ignore the source of stress as much as possible, for example by avoiding information about the complaint.

What does the interpretation of symptoms entail?

Even though symptoms do not necessarily lead to illness, they can result in someone taking on the disease role. That disease role is in turn influenced by the culture in which someone lives, for example an individual or a more group-oriented culture, or a culture in which people believe in the influence of spirits or a culture in which people assume physiological and psychological influence on health. The fact that one person simply lives on with certain symptoms and the other adapts is caused by individual differences. These individual differences can exist in different areas:

• Gender: Somatisation disorder is more common in women, and women score higher in terms of neuroticism. Women therefore interpret physical signals more as a symptom of an underlying disease than men. Women also go to the doctor more often.

• Life stage: It is plausible that (young) children differ from adolescents in the cognitive awareness of disease. It is very difficult to find this out, because children cannot yet express their thoughts and for ethical reasons. There is evidence that children have the same multidimensional ideas about diseases as adults. Much research is still needed in this area.

• Personality: Personality and emotional traits can influence how symptoms are interpreted. For example, people who score high on neuroticism have often symptoms. Moderate levels of neuroticism are, however, beneficial, because it leads to a better continuation of the treatment and to go to the doctor sooner if there really is an illness.

• Self-identity: Many people have different social identities depending on the context (student / partner / daughter), and the interpretation of symptoms differs depending on a person's current social identity at that time.

• Disease experience: Previous experiences influence the interpretation and response to symptoms.

Prototypes: if a physical signal is seen as a symptom, what determines that a person believes he / she is sick? Usually a person thinks he is ill if the symptom fits into a schedule that he / she can retrieve from his/her memory. Diseases that have fairly clear symptoms are more quickly recognized by a self-diagnosis. The common-sense model: the representations people have of diseases are formed by the media, by personal experience and by what friends experience. These cognitive diagrams determine how someone responds to signals from the body. The common-sense model is a framework for dealing with and understanding disease. This model is based on the parallel processing of the components of the stimuli: a symptom causes pain (cognition) and the person reacts emotionally, for example with anxiety. The model has a so-called feedback loop of coping and representations.

A disease representation is created as soon as someone becomes aware of the symptoms. Five consistent themes in disease representation have been identified over time:

1. Identity: variables that indicate the presence or absence of a disease

2. Consequences: the expected influence of the disease on the person concerned

3. Cause: the assumed cause: someone may think that it is biological, psychological, emotional, genetic or environmental

4. Timeframe: does anyone expect it to be short (acute) or long (chronic)?

5. Controllability / curability: to what extent someone thinks something can be done about the disease?

All these representations influence the course of the disease. For example, whether someone seeks help depends on the extent to which someone thinks the disease can be cured.

The Illness Perception Questionnaire (IPQ and IPQ-R)

The IPQ is a well-validated questionnaire and there is a specific version for children. The revised version, the IPQ-R, distinguishes between convictions about personal control over the outcome outcome disease and expected treatment control. It also assesses a new dimension of emotional responses to illness such as anxiety, and examines the extent to which a person feels they understand their condition.

Ilness representations and outcomes

Illness representations have also been shown to have direct effects on a wide range of outcomes, including:

• Searching and using medical treatment

• Participating in self-sufficient behavior or behavioral change

• Attitudes towards medicines and treatment choices

• Illness-related disability and return to work

• Anxiety and depression from caregiver

• Quality of life

In general, experiencing control is associated with adaptive outcomes, including psychological health and social functioning, while high symptom identity, chronicity, and serious consequences are negatively associated with such outcomes. Lately, there has also been an increase in longitudinal studies, which shows the importance of the relationships between components and outcomes over a changing course of the disease.

The impact of treatment changes on disease perceptions

Studies show the importance of considering the patient's perceptions about important treatment transitions in order to manage perceptions as well as possible and to optimize the patient's quality of life and adaptation.

Causal attributions

Attribution models are about where a person locates the cause of an event. We make attributions to make unexpected events easier to understand or to gain a sense of control. Lifestyle factors and stress are the most commonly made attributions. People with lung cancer often do not see smoking as a possible cause, and this can be a defense mechanism. Attributions of causes can influence how we respond to our disease, unfortunately the attribution is not always good. Culture influences causal attributions. For example, there is variation in the extent to which members of a specific culture believe in supernatural causes of disease. Cultural differences also play a role in other disease representation dimensions.

How do we respond to symptoms?

The first step is to recognize that they have symptoms of an illness. The behavior of people who have recognized symptoms but are not yet seeking medical help is called illness behavior. Illness behavior consists of rest, self-medication, seeking sympathy and seeking (informal) information to determine health status. When they have done that, they can decide to ignore the symptoms and hope that they will pass, seek other advice or go to a health professional. Usually someone ultimately takes all these steps in the above order. The lay referral system is also called for advice from family, friends, acquaintances and colleagues about health issues.

People who think they have or are having a heart attack often wait at least an hour before seeking professional help. However, the drugs that have a blood-thinning effect and can thus reduce the damage to the heart work best within an hour of starting the problems. So it's not always good to wait. Once someone has decided that he is ill and needs professional help, it usually takes a while before the help can actually be offered.

Delay behavior

A large number of people wait to seek professional help with symptoms. Safer et al. (1979) has devised a three-phase model and indicates that an individual will seek help when the three phases have been completed with a positive answer.

• Appraissal delay: having or not having symptoms

• Illness delay: whether or not to seek medical assistance

• Utilizsation delay: the time between determining that people need help and actually visiting a doctor

There are a lot of factors that determine why people seek help or not. Consider, for example, social class, finances and education level. A number of factors will be discussed below.

The type of symptom can play a role. If the symptom is clearly visible to yourself and others, someone will postpone it less to seek help. The effects of symptoms are also important. If symptoms threaten normal relationships or disrupt activities or interactions, people are more likely to seek help. The location of the symptoms also affects the delay in seeking help: some things are easier for people to discuss with friends / family than others. The observed prevalence over the symptoms and illness can also determine whether they seek medical help. Diseases that are common are normalized and considered less serious. A person's financial situation can also play a role. Being diagnosed with a certain disease sounds appealing to some people because it allows them to escape obligations such as work and still receive money from insurance. On the other hand, finances can also ensure that someone is not looking for help. People are afraid of the costs that the intervention entails if the assistance is not (fully) reimbursed or if they are not insured. Young people and old people seek help faster than the age group in between. Old people worry more quickly and middle-aged people want to minimize their problems as long as possible. Women use health services more often than men. Men show their masculinity by engaging in risk behavior and by showing no signs of weakness. Women want to seek medical help sooner. The influence of others is also important: people often only take action if they are encouraged to do so by others in their network. It seems that many people first seek permission to seek help. What also plays a major role in the delay in seeking help is the fear of diagnosis. Some people wait to look for help because they are afraid that they have a certain disease, but actually don't want to know that yet.