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.
© Disability NarrativesCharlotte describes her symptoms of IBS and the impact these had on her life.
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".
© Disability NarrativesCharlotte 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.
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."
© Disability NarrativesMilembe 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.
© Disability NarrativesMaeve has had to make several lifestyle changes to help manage her condition.
© Disability NarrativesMilembe found that returning to work after a serious illness she prioritised her wellbeing more.
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.
© Disability NarrativesMary has had to find ways to adapt to the new routines she needs to help manage the pain from her condition.
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.
© Disability NarrativesGabrielle 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.
© Disability NarrativesFor Charlotte the ways she has found to manage her symptoms are not guarantees that she won’t still have episodes.
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.
© Disability NarrativesLearning how to manage her reaction to being dyslexic was part of how Lyn came to terms with her disability.
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.
© Disability NarrativesMaeve explains some of the side-effects of her epilepsy medication.
© Disability NarrativesMary has found it difficult to find the right balance of pain medication so that she is not too sedated at work.