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Disability Narratives

Having a long term condition or disability may have impact on a person’s life in any number of physical, emotional or practical ways. We explored in the interviews the various personal implications of a condition or disability upon the ways a person sought to live their life. In doing so we can provide some context for the different ways that a condition or long term disability affects working lives.

How a condition or disability can affect a person's life

We spoke to people who had a diverse range of long term conditions or disabilities. They told us about a broad range of symptoms, bodily sensations, emotional and psychological affects that they experienced and how they affected their lives.

Click for Susannah's interviewSusannah described some of the effects of a migraine.

 

 

Click for Charlotte's interviewCharlotte describes her symptoms of IBS and the impact these had on her life.

 

Click for Sue's interviewSue explains that living with pain on a day-to-day basis takes up a lot of time and energy.

 

Psychological implications

The psychological consequences of living with a long term condition or disability affected people in a number of ways. Some people said they experienced problems maintaining concentration, had lower tolerance levels for stress, self-esteem and confidence, and mood swings. As Jan reflected, "If anything, it would be a confidence thing that would be - I could say would have affected me more than anything else".

Click for Richard's interviewRichard explains that it can affect his self-confidence when he does not maintain the difficult balancing act needed to control his diabetes.

 

Click for Stella's interviewStella explains that her condition sometimes affected her resilience to some life events.

 

Click for Charlotte's interviewCharlotte described how the stress of working with an emotionally unpredictable senior colleague over a period of time contributed to a decline in her mental health.

 

Click for Ruth's interviewAlthough growing up with undiagnosed dyslexia affected occasionally Ruth’s confidence, it did not stop her seeking career progression.

 

Some people told us how at times in their life the personal or private issues they had faced had affected their condition or disability (often for the worse) and that this then had affected their work. To respect the privacy of the people we spoke to, we will not provide specific examples here, but we can summarise a couple of examples.

A relationship break-up can be a stressful and upsetting period in a person's life, which may result in a loss of sleep, not eating well, and breaks in routines. In some people's stories this resulted in a deterioration in their physical and/or mental health. Other people told us about the impact of moving to a new city to take up a position. Changing jobs can be associated with the excitement and hopes often attached to a new job. But taking up a new role can also mean experiencing a number of losses. Not only does this relate to leaving family and friends behind, but it could include the loss of a home and a previous (well liked) job.

For both examples it might be expected that such disruptions would be problematic for most people. What the people we spoke to found was that these life events also interacted and exacerbated their condition or disability, and that in some cases they might need time off work.

If the implication of managing a condition or disability meant time off work then this too could affect how people were feeling. Roberta said that most days she sought to "Push [the pain] to the background" through a combination of adjustments to working practices, painkillers, and by "keep[ing] moving." However, "I went through a period that I just, I woke up in the morning, and it was like 'oh, I just don't want to go to work'. Because I just - because I knew - it was just, it hurt. Like you know, going to work actually was painful."

Click for Stella's interviewStella explains how her depression has affected her work and how that makes her feel guilty.

 

Click for Milembe's interviewMilembe explains that she felt guilty for letting colleagues down when she was off sick.

 

Learning about managing a condition or disability

We asked the people we spoke to about the ways they sought to manage or incorporate their condition or disability into everyday living. This included the ways that they had come to manage the changes to their life that they had experienced.

For many there were things that needed to be given up or avoided, such as Richard who had to avoid sweet or fatty foods as part of managing his diabetes. Similarly some activities and sports people had played before had to be avoided, but others were taken-up or continued, including, rowing, cycling, swimming, walking, or Pilates (to name a few). For different people they helped in different ways as they were a means to improve, maintain, or prioritise personal health and wellbeing.

Click for Sue's interviewFinding the right form of exercise has helped Sue physically and psychologically.

 

Click for Maeve's interviewMaeve has had to make several lifestyle changes to help manage her condition.

 

Click for Milembe's interviewMilembe found that returning to work after a serious illness she prioritised her wellbeing more.

 

Making changes

The people we spoke to found different ways to instigate changes in their lives. Some had help from healthcare professionals (see also Support from Welfare services and the NHS), others experimented with new routines, and some had to face longstanding fears.

Click for Sue's interviewFinding someone who helped provide an alternative outlook on life helped change Sue’s attitude about what was possible when living with a long term condition.

 

Click for Mary's interviewMary has had to find ways to adapt to the new routines she needs to help manage the pain from her condition.

 

Click for Maria's interviewMaria’s guide dog has changed her life and helped her face many fears.

 

Difficulties, problems and ongoing learning

For some of the people we spoke to adapting their lives and ways of living was an ongoing and difficult process that involved a good degree of patience with one's self, trial-and-error, a degree of resilience, and a capacity to live with uncertainty and unpredictability.

Click for Gabrielle's interviewGabrielle finds that one way to manage is to try to carry on as normally as possible but the unpredictability of fatigue makes it difficult for Gabrielle to plan her workload.

 

Click for Liz's interviewLiz explains how she is still learning to have patience with herself and how the transition back to work has been difficult at times.

 

Click for Devon's interviewDevon explains how some days she only has so much energy in reserve to manage the pain and that she must balance pain medication needs with being able to function.

 

Click for Maria's interviewMaria tries to remain positive, but there have been some difficult days.

 

Click for Charlotte's interviewFor Charlotte the ways she has found to manage her symptoms are not guarantees that she won’t still have episodes.

 

Click for Devon's interviewDevon reflects on how the uncertainty of her condition made it difficult to plan longer term.

 


The (side) effects of diagnosis and treatment

The personal effects of diagnosis

The diagnosis of some conditions or disabilities can take a long time to establish and, as some people explained, this can be a difficult period of time. For example, Gabrielle was told that the brain scans were coming back clear, even though her clinicians were confident her symptoms indicated MS. She therefore experienced a period of uncertainty until a second clinical episode about a year later, when she was definitively diagnosed. At the time we spoke to Frances she explained she was in a long process of getting a psychological assessment, which she hoped would help explain some of her symptoms and experiences. Frances reflected that not having a diagnosis made her feel "insecure" and anxious.

For others their diagnosis brought both "relief" and understanding, as well as personal challenges of coming to terms with what that meant for them.

Click for Lyn's interviewLearning how to manage her reaction to being dyslexic was part of how Lyn came to terms with her disability.

 

Click for Paul's interviewThe understanding of why he occasionally walked into things and could be exhausted at the end of a day gave Paul more confidence about himself.

 

The (side) effects of some treatments also had negative effects for some people, including mood swings, weight loss or gain, drowsiness or fatigue, inability to sleep, and effecting people's attention spans and focus.

Click for Susannah's interviewSusannah explains that the process of finding the right treatment can take a long time and involve a degree of trial and error.

 

Click for Maeve's interviewMaeve explains some of the side-effects of her epilepsy medication.

 

 

Click for Mary's interviewMary has found it difficult to find the right balance of pain medication so that she is not too sedated at work.

 

 

 

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