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Loss of self: A fundamental form of suffering resulting from chronic illness

At a glance:
Long-term health conditions often restrict people's lives, meaning they can no longer perform roles that are central to their sense of identity. For most, this is a traumatic experience and can be destructive of self-image. Along with the physical impacts of the condition, restrictions can lead the person to withdraw from their normal activities and become isolated.
Perspectives:
Employee
It is distressing when you can't do the things that are important to you. If you become unable to do the work you used to, or play a sport you love, it can be challenging your sense of self.

Work is an important part of our lives, it is one of the things that gives us a sense of who we were. When a person can't work because of a health condition it can be especially distressing – particularly if they see themselves as “the breadwinner' but are no longer able to support their family.

The difficulties can be even greater for “perfectionists.' Their focus on getting things right it is more intense, and so is their distress
distress
Severe suffering, pain, anxiety or sorrow
 when things don't go as planned.
Employer
Understanding your employee can help return to work outcomes. People have a sense of themselves, perhaps as a larrikin, a hard worker, a provider, or as a strong and healthy person.

When they have a health condition that stops them from functioning normally, this ‘sense of self' can be diminished. This can make people sad and worried, without them necessarily recognising these feelings, or being able to talk about what's causing them.

If you understand what is happening to your employee, you will be in a better position to help them through difficult periods, and structure their return to work program so it fits their needs.
Treater
Many people with long-term health problems are not able to live their lives as they expected. This can be challenging to their sense of identity.

Simply recognising this fact can help. For the person, articulating their feelings can help people identify ways to improve the situation. For example, if an injured person is proud of their house-keeping, but no longer able to keep up, they're likely to be distressed. Discussing this with them can be some help. You might also be able to help them recognise that trying to keep up is admirable in itself, and acknowledge that it's ok to seek help from others.

If an individual sees themselves as “the provider' but their work injury reduces the household income, it may be important to work with them to plan and understand the likely path forward. WorkCover payments will often be reduced over time, and some employers will not provide long-term modified duties. Working with the individual to get back to their normal job as quickly as possible can help. Give them a good sense of expected recovery time frames, encourage them to be active, and work with their employer to make sure they resume normal duties as soon as possible.
Insurer
It is important to acknowledge the impact of a work injury on an individual. Helping the person to recognise the impact themselves can enable them to find positive ways of dealing with the situation.

Recognising the impact of a condition allows a person to change their situation. People who have been off work for more than a few weeks have particular trouble with motivation. Not working has become their habit. Most of us find it difficult to change our habits, even when we want to.

The key aspects that motivate people to change include seeing the downside of the current situation, and the benefits that would occur with change.
Original Article, Authors & Publication Details:
Charmaz K.

Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness Vol 5(2) Jul 1983, 168-195, 1983.
Background, Study Objectives, How It Was Done:
Chronic or long term health problems have significant impacts on a person's life. This paper examines what happens to people with chronic
chronic
continuing a long time or recurring frequently
 illness. It is not specifically directed at work related problems, but is included as it provides insight into some of the difficulties of having a long-term health problem such as back pain.

The author of this paper performed in-depth interviews with 57 chronically ill people in North America. Their health problems included heart disease, diabetes, multiple sclerosis, cancer, back pain and other chronic conditions. The age range of those interviewed was 20 to 86 years old, with most between 40 and 60.

The study proceeded from the notion that people develop a sense of themselves through social roles and relations. Based on an examination of the ways in which people come to terms with chronic health problems, the researcher hypothesized that people have a sense of identity which may be lost if health problems restrict their lives. The author suggests that medical and social systems do not do a good job of supporting people as they come to terms with chronic condition.
Study Findings:
The author's findings are drawn from in-depth interviews of the participants. Findings from these interviews are grouped under several headings:

Living a restricted life

People with long-term health problems often become restricted in their activities. Some of these restrictions may be minor, but others are more substantial or part of the person's core identity. If an individual sees themselves as strong and fit but and then becomes limited in their physical abilities, an important part of their life may be lost to them.

Restriction is likely to be greater if health care professional do not give patients sufficient information or treatment that supports them in remaining active.

Having an unpredictable condition sometimes means that people further restrict their activities because they are afraid of making the condition worse.

Restricted function causes some people to retreat into themselves. In a small group of people this becomes a retreat into an all-consuming world of illness. For this group, life can be wholly focused on illness and fears about the future.

Social isolation

A restricting condition can cause people to withdraw from their normal activities. This can cause isolation at work, at home and from friends.

If people feel they are devalued because of their condition, it can cause them to restrict contact with others, increasing their isolation. In some circumstances this will only occur with acquaintances or previous workmates, but in others it can extend to close friends and family.

On being discredited

Sometimes people respond negatively to someone with a long term health problem, or even express disbelief. The significance of these experiences depends on how often they occur, the perceived importance of those who discredit the person, and how strong the negative response seems to be. This does not affect all people equally, but for many it will weaken the foundation of an already shaky sense of self.

Managing long-term health problems can be stressful for family members, who may also be struggling with the situation. Family members might not be able to provide the support a person needs, and may also discredit them.

Sometimes people assume that poor outcomes are due to a lack of motivation to improve the situation. Others sometimes think that the person takes on a role of reduced function on purpose, or wishes to abandon their responsibilities.

Health practitioners can contribute to the problem if the express disbelief about the person's condition. This can be a problem particularly when there is no clear diagnosis.
diagnosis
The process of identifying a medical condition or disease by its symptoms, the findings from a medical examination, and from the results of various diagnostic procedures.
 

People with long term health conditions also discredit themselves, which can be one of the most significant sources of suffering. People have expectations about their lives, and what they can do and contribute. This may include providing for a family, playing sport at a high level, or being a role model for their children. When a health condition prevents someone from performing (or believing they can perform) tasks central to their identity, the impact can be enormous. In such cases, people often discredit themselves.

Profound disappointment and grief are often the result. Many people don't understand or acknowledge that losses to their sense of identity are a reason for their sadness. People may come to see themselves as permanent failures and a burden to others, causing them to further withdraw and become more isolated.

Becoming a burden

When people can no longer fulfil what they see as the basic obligations of their relationships, they often feel they are a burden on those around them. People often describe feelings of uselessness to themselves and others, and describe them as the worst development.

A perception that one has “become a burden' may develop when people are unable to continue in their normal activities at work or at home. Sometimes other people in the household need to increase their share of responsibilities, or get a job to replace lost income.
Conclusions:
People with restrictive long-term health problems typically develop a higher level of self concern, meaning that they worry about who they are becoming, and suffer damage to their self image. This can cause further problems, like a tendency to scrutinize encounters with other people for signs of a negative response.

Long-term health problems can make people more dependent on others. They may experience traumatic changes to their self image, and no longer feel able to claim the identity they used to feel was theirs.

The author noted a striking contrast between participants. A small group had improved, and no longer suffered emotional consequences. These people had used their situation as a path to knowledge and self-discovery. They had developed an awareness of their overall situation and had developed meaningful ways to relate to their condition, themselves, and those around them.
References:
PubMed Abstract
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