Type 1 respondents generally reported a desire to maintain control of their disease themselves rather than rely on others, whilst type 2 respondents reported being more willing to comply with guidance from their health professionals.
However, this sense of personal responsibility and need for personal control appeared to have important implications for the wellbeing of respondents while at work. Two key themes emerged from the data. Firstly, that respondent’s did not see any real value in informing their employers about their diabetes, nor did they expect much support from them. Secondly, they reported running their blood glucose levels at higher than optimal levels to manage their work, thereby putting themselves at a greater risk of developing long term complications.
Informing employers of their diabetes status and gaining support
Managing chronic illness involves the adoption of a styles of adjustment which include deciding how much should be disclosed or disguised about the condition, how far the person should ‘come out’ and in what way and in interacting with others [20, 21].
Munir et al. [22
] identified a range of factors that may influence whether an employee will self disclose his or her illness including the need to take medication at work, sickness absence, the impact of the illness on their ability to do the work, access to practical or social support, possible stigma associated with the illness and the organisational culture. Self disclosure can be either full or partial. Partial disclosure is where the employee does no more than inform their line manager about the presence of an illness:
“When I was diagnosed as diabetic I advised them, but that was more from the point of view that a) they needed to know b) er because I drive a company car, they needed to know to advise insurers – but I don’t think to be honest with you that it registers on their radar screen so much that that I’m a diabetic.” Int 43 Type 2, Engineer, Construction Sector.
Full self disclosure, which involves employees informing their line managers about how their illness affects them whilst they are at work, has been shown to be more likely to occur where employees perceive they will receive support from their line managers . In our study full disclosure of diabetes status, whether desired or not, often followed a hyperglycaemic (increased thirst, increased urination, tiredness or fatigue and blurred vision) or hypoglycaemic (dizziness, shaking, slowed speech or thinking and weakness and possibly mental confusion, unconsciousness or seizures) event.
Of the 19 respondents who worked in the private sector 5 were forced to disclose their diabetes due to having had a hypoglycaemic event or time off sick. They reported their line managers as unhelpful and received little support. Six reported voluntary full disclosure and considered that they had been given a good level of support within their workplace. While the remaining 8 respondents reported partial disclosure only 1 of whom reported receiving support.
Of those working in the public or voluntary sector (19) diabetes status was disclosed as a result of them having had a hypoglycaemic event in 9 cases and all reported their line managers as unhelpful and unsupportive. Four reported fully and voluntarily disclosing their diabetes and 3 of these reported they had gained support. Six reported partial self disclosure only 1 of whom received any support.
There was little difference between those with type 1 and type 2 diabetes in terms of the support received, however, respondents who were using multiple daily injections and were likely to require special consideration at work due to the need to be able to safely inject themselves, were more likely to have fully disclosed their diabetes and to have gained support. Full voluntary disclosure was more closely linked to gaining support from managers with 9 out of the 10 respondents who voluntarily disclosed their diabetes reporting having gained support. Nevertheless, most respondents (27) reported finding their managers unhelpful and two potential reasons for this lack of support were suggested by respondents.
Firstly, there was a general view that employers and managers did not understand diabetes and therefore were not in a position to provide appropriate support:
“I wouldn’t say they (management) particularly understand, erm, I told them and it’s accepted – but I’m not sure my line manager is capable of understanding.” No 38 Type 2, Human Resources Local Government, Public Administration Sector
The majority of respondents indicated that their managers were unaware of the nature of diabetes or its potential effect on their health and productivity. Linked to this lack of understanding of diabetes was a tendency for managers to be disinterested and therefore not likely to ascertain the level of support that might be needed:
“They know I’m diabetic, but that’s it, they never asked anything about it or what to do.” Int 6, Type 1, Accountant, Financial Sector
Overall, only 9 of the 43 respondents considered that they had had any relevant support from their managers. Those who voluntarily disclosed their diabetes status and reported receiving support stated that they worked in environments where there was a supportive ethos in which managers valued their staff.
Secondly, respondents considered that managers were more concerned about getting the job done than considering the well being of the employee or providing any concessions for their diabetes. Respondents described a number of circumstances in which they felt they were denied the opportunity to undertake activities that were needed to effectively manage their diabetes. For example, the following respondent described how his manager was unhappy about him taking time off work to go to the hospital or doctor:
“At work I get lots of ‘well why do you need to go now (to doctor or hospital) can’t you do it after work, why can’t you do it on your day off (Sunday) ” Int 22, Type 1, Salesman Retail Sector
Difficulty in securing time off for medical appointments, regular meal breaks and safe hygienic areas to administer insulin were identified as problematic.
In addition to managers and employers being perceived as having a poor understanding of diabetes respondents suggested that organisational risk management policies and practices were also problematic and unhelpful. For example, the following respondent echoing the concerns of other respondents, said that their manager tended to over react to any situation where the employee with diabetes felt unwell:
“I’m not sure they (management) fully understand. I think at a drop of a hat they’d phone for an ambulance when I’d really think it wasn’t necessary. I work for a County Council and their sort of Health and Safety policy is that if somebody is unwell at work, then you can’t move them. You must get an ambulance and get them out of the building. That isn’t really how you should treat a diabetic. I think because the policy has been put in place they don’t treat it on an individual basis. Int 30 Type 1, Design Co-ordinator, Local Government Public Administration Sector.
Respondents described health and safety policies and practices as being generic and as consequence not necessarily being suitable for people with diabetes. Thus, rather than managers ascertaining the needs of employees with diabetes and devising a plan or strategy to address those needs managers tended to implement a blanket health and safety policies which involved sending employees with diabetes off to hospital.
Over reliance on health and safety policies were also implicated in respondent’s views about feeling unsupported. For example, the effect of having had a hypoglycaemic event was described by those with type 1 diabetes as distressing and potentially having long term consequences for them while at work:
“I had a ‘hypo’ and my manager decided that I should have a risk assessment. And it was very difficult for me because, from a social work point of view, we do risk assessments on clients. It was extremely humiliating ..it wasn’t occupational health, they didn’t even get involved. It was a manager from another department – she’s not even health trained or anything and they suggested that I have someone with me all through the day in case my diabetes was messed up.” Int no 1 Type 1, Social Worker Local Government, Public Administration Sector
The example above illustrated the potential difficulties employees may face in a workplace where there is a lack of understanding of the nature of the disease. Although the manager addressed the hypoglycaemic event according to protocol it still left the employee feeling unsupported and potentially stigmatised.
Nor did respondents expect that their colleagues would be in a position to do much to help. Most stated that they informed their immediate colleagues of their diabetic status but felt that colleagues, like the managers, did not understand the nature of diabetes and held a number of misconceptions about appropriate preventative behaviours for diabetes:
“I went to work after a hypo and they (colleagues) said ‘Cor, you look rubbish’, ‘Cor you look ill have you been drinking?’ and you just want to be left alone to get back to normal. People who don’t understand, umm, I find come up with statements like ooh you shouldn’t be eating that should you? cos it’s got sugar in.” In 32, Type 1, Salesperson, Retail Sector
A number of respondents (10) also reported experiencing a degree of prejudice from colleagues which added to the constraints they faced in managing their diabetes at work:
“I worked with a very bigoted woman who didn’t want me to do my pen injections at my desk… She wanted me to go into the toilets and do it and I fought my corner and said ‘Actually, no – a sterile piece of medical equipment that I’m trying to put into me, in a really stinky, unhygienic toilet?” Int 8, Type 1 Administrator, Social Care Sector.
Respondents suggested that it took time to be able to educate their colleagues and to trust that they would not just ‘press the button and call an ambulance’ rather than give them some sugary drinks or something to eat as required. Nevertheless, those respondents who worked in smaller workplaces, staffed mainly by females, were more likely to report that they were able to ‘educate’ their colleagues about diabetes and to get them to keep an eye out for an impending ‘hypo’ and provide sugary drinks/food as appropriate.
Running blood glucose levels above optimum levels
Chronic illness and its outcomes are shaped by the decisions and actions carried out by individuals over of the ‘trajectory’ of the illness [20
]. Diabetes is a chronic illness which interferes with social interaction and role performance. Within the workplace it is not just a given biological entity, patterned by social conditions, but is itself a ‘negotiated reality’ [20
]. As respondents generally felt unable to negotiate and obtain appropriate support for their illness they reported taking actions to ensure that their diabetes did not limit their ability to carry out their work. They reported ‘controlling’ or managing their disease in a way that would reduce any potential disruption in the workplace. Tight control of blood glucose levels is the most important preventative measure to reduce the risk of long term complications of diabetes and the risk of experiencing a hypoglycaemic event - particularly for those with type 1 diabetes. In order to achieve the goal of controlling their blood glucose levels some respondents reported frequent checking of their blood glucose levels and then adjusting insulin doses or food in order to manage fluctuations in blood glucose levels:
“I review my basal rate (continuous rate of insulin) or I reduce my bolus (the amount of insulin given for food) one or the other sometimes both. I do it for hours on the trot.” Int 27 Type 1 Office worker, Service Sector
However, nearly three quarters (30) of respondents adopted a diabetes management strategy that potentially put their long term health and future productivity at risk. They reported running their blood glucose levels ‘high’ in order to be able to function effectively at work. Central to running blood glucose at higher than optimal levels were three main issues:
Firstly, the need to feel well enough to carry out their work and stay focused. For example, the following respondent, in describing how she managed her diabetes at work, reported that to feel right and be able to do her job she needed to go against advice recommended by her health professionals:
“I think personally in myself in my body I feel better when I’ve go more sugar and when I’m sort of 5 or 6 mmol/l like they (health professionals) want I feel a little bit not right.” Int 20, Type 1, Sales Assistant, Retail Sector
Secondly, for respondents with type 1 diabetes the desire to avoid a hypoglycaemic event while at work was reported as a priority:
“ If anything at work I tend to run slightly higher so that I don’t have hypos” Int 5 Type 1, Manager, Transport Sector
The need for some employees to protect the people they were working with, such as young children or vulnerable adults, provided a rationale for them to run their blood glucose levels at higher than optimal levels in order to avoid a ‘hypo’ occurring at an inappropriate time.
“If I am teaching I tend to run slightly higher because I don’t want to go ‘hypo’ in front of a class – so I tend to run higher if I am in that sort of situation.” Int 7, Type 1, Health Professional, Health Sector
Thirdly, the need to accommodate situations where work patterns meant that they could not access food, monitor their blood sugar etc. which might in turn result in an adverse event:
“I run it higher when I know I will have to go without food at work.” Int 39, Type 2, Packer, Manufacturing Sector
Where respondents worked in situations where there was a requirement to complete tasks within set times, e.g. in a factory production line, and there was no opportunity for the employee to take a break when needed, they were more likely to report running their blood glucose levels high. This was also relevant to employees who undertook tasks that required high levels of concentration and where lives may be put at risk if a ‘hypo’ were to occur:
“I always tended to run on higher blood sugar. And I do a lot of driving, so I could never afford to take the risk of having a ‘hypo’ on the motorway.” Int. 22 Type 1, Salesman, Retail Sector
Even where working conditions were potentially hazardous, rather than alert employers or managers to the potential risks or dangers, respondents preferred to control the situation themselves by allowing higher than optimal levels of blood glucose in order to avoid the panic created by hypoglycaemic events:
“I work in a prison – I work with murders and rapists etc. and er. I work alone with them and I can’t afford to have a ‘hypo’ but then again I don’t want to be as high as I sometimes am. I don’t get the opportunity of doing as many blood tests as I would like because I can’t carry things with me. I can take biscuits and sweets but the needles and medicine etc. has to be locked away. To be honest I would not press the panic button (if felt having a hypo) because it is all about saving face. You don’t want it to infringe on your life to that extent also people over react – so you feel a responsibility about panicking them – so I run high” Int 19 Type 1, Librarian, Public Administration Sector.
Respondents in this study made decisions which resulted in work requirements taking priority over their individual needs and their diabetes self management was adjusted to fit the job rather than the job being re-structured or adapted to meet their needs. Respondents reported adopting strategies that focused on minimising visible loss of productivity e.g. as a consequence of ‘hypo’s’ or not being fit to drive a vehicle etc.
Type 1 respondents tended to report running their blood glucose high in order to prevent the risk of a ‘hypo’ rather than on keeping their blood glucose levels tightly controlled. While type 2 respondents reported trying to ensure they were able to eat food regularly in order to maintain their blood glucose at optimum levels but having to run their blood glucose high in certain circumstances. These strategies reflected a need to ‘manage’ their diabetes in order to reduce its impact at work and to enable them to work independently without support from their employers. Bury  suggested that people that are suffering from chronic illness make choices about how to mobilise resources and balance demands on others while remaining independent. Respondent’s in this study, unable to access adequate support and believing that they had responsibility for managing their own disease, resorted to engaging in self management strategies that were likely to be detrimental to their health and independence in the long term.