I am 24 and have been type 1 diabetic for thirteen years. Throughout my student life, I worked part-time in the retail and hospitality sectors; roles in these high pressure environments are often unavoidable for young people balancing studies and paying rent. Throwing a disability into this mix only makes for even more of a challenge. Most people with a disability are sadly used to ignorant comments made in passing, but one particular incident has stuck with me as it is one of the few times I have ever been truly angered by a colleague’s remarks.
Whilst on an evening shift in a busy department store, I had taken a moment to test my blood sugar and eat a snack in the staff room after a rocky shift plagued with low blood sugar episodes, or ‘hypos’. Feeling flustered from the drop in blood sugar and having already had to treat a previous episode on the same shift, my supervisor swung her head round the door and tutted.
“Have you not got that under control yet?”
I was stunned. The ignorance to assume that diabetes is something that can ever be definitively ‘under control’ (and not something we diabetics spend our lives trying to do) and the suspicion that I was lying to take another break really hammered home the misconceptions that people have about the condition, the lack of understanding of its seriousness and the dismissiveness of this often invisible illness.
Diabetes is caused by the body being unable to regulate the amount of sugar in the blood due to the pancreas not producing enough insulin (or none at all). A hypo, short for hypoglycaemia, is an episode of low blood sugar. This can be caused by a myriad of factors, from exercise, stress, delayed meals, temperature or having taken too much insulin. Overall, there are at least 42 different factors which can affect your blood sugar — yet sometimes we simply don’t know why we have a hypo.
Symptoms of a hypo include shakiness, sweating, headaches, disorientation, hunger and can lead to loss of consciousness if untreated. In most cases, consuming something sugary like Jelly Babies, fruit juice or Dextrose tablets, followed by a slow-release carbohydrate (like a slice of toast or plain digestive biscuits) and 10–15 minutes to recover can bring blood sugar levels back to normal.
This past year with the spread of COVID-19, conversations about ‘vulnerable’ people, underlying conditions and invisible illnesses have pervaded public discourse. Diabetic people are classed as clinically vulnerable in terms of risk of serious illness from coronavirus, despite the fact these otherwise ‘healthy’ looking people mightn’t be the image conjured up when we hear the word vulnerable. It is this exact mindset that often leads to diabetics facing discrimination in the workplace, especially when it comes to dealing with the unpredictability of their condition on the job.
According to a Diabetes UK survey, one in six working people with diabetes feel that they’ve been discriminated against by their employer because of their condition. More often than not, this arises from general ignorance about the seriousness of diabetes, which is often the butt of jokes about eating too many sweets. Unsolicited advice from colleagues and managers about what they don’t understand, unhelpful questions, miracle ‘cures’ and the implication that we are doing something wrong all add to the worry and shame many diabetics feel around their condition. This hiding or downplaying of chronic illness is not only discriminatory, but dangerous. Feeling unable to treat diabetes in the workplace could mean blood sugars running high or low for prolonged periods without being aware, which can lead to a significant risk of long-term diabetes complications.
As shift work makes it difficult to have a regular routine (and in turn manage blood glucose levels), it is important that diabetic employees feel able to talk about their condition and receive the support they need. Diabetics have a vibrant online community and this has made sharing experiences of managing the condition at work a little less isolating. Whilst a few have been lucky to have supportive colleagues, this is not the typical experience for most sufferers.
From being denied breaks or feeling unable to ask for one, having to inject insulin in the toilets and working whilst hypoglycaemic, to being told to “just get on with it”, others’ ignorance characterises most diabetics’ negative experiences.
Madeleine, a 24-year-old from London, faced these issues working in hospitality. “If a hypo took longer than 10 minutes (which it often does), then I got a lot of negativity, asked to make up for it, do more work or stay later to make up the time. It also led to a lot of guilt from my side and I’d often over-treat hypos to come up faster, or stay ‘higher’ to avoid going low whilst working. I think I generally allowed that to become a trend, as I became increasingly conscious that I couldn’t be going low more than once a week or it would just lead to me having an awful time.” Now an account executive, she is still asked ridiculous questions about her condition like if she can ‘schedule’ hypos outside of meeting times.
This lack of understanding only adds emotional stress on top of having to manage the condition. Dr. Rose Stewart, Principal Clinical Psychologist specialising in diabetes for NHS Wales, highlights that diabetics in this situation can often feel singled out and bullied. “People are likely to experience difficult feelings of stigma and embarrassment, and when the ‘can you eat that?’ question comes up, it might lead them to feeling self-conscious about their food, which can lead to disordered eating behaviours. All of these things are likely to increase a person’s diabetes distress, which in turn negatively impacts their general psychological health and their diabetes management. Sometimes people feel the need to ‘prove everyone wrong’ which means they’ll try to work harder than ever, often at the expense of their own health and putting them at risk of burnout.”
So what can diabetics do if we feel we’re being discriminated against? All people with disabilities are protected under the Equality Act 2010 in England, Scotland and Wales and the Disability Discrimination Act 1995 in Northern Ireland. Exceptions on hiring insulin users exist for the UK armed forces and emergency services, but otherwise the rights of those with disabilities are enshrined in these acts to ensure fair and equal treatment. The Equality Act defines a disability as a physical or mental impairment with a substantial long-term negative impact on a person’s ability to carry out normal day-to-day activities — as a lifelong condition requiring daily medication, diabetes meets these criteria.
The Act also sets out the requirement for reasonable adjustments to be made for disabled employees. In the case of diabetes, this could mean allowing an employee to have their lunch break at the same time each day so they can eat at a set time and help to manage their blood sugar. Another reasonable adjustment would be to allow time off or flexible working hours to attend hospital clinic appointments. It’s also useful for colleagues to know about the condition to help spot hypo symptoms and offer assistance.
This desire for management to have at least a basic understanding of the condition is echoed by the wider diabetic community. In the case of ongoing negative remarks, attitudes or treatment, an informal chat about any potential diabetes-related discrimination is your first port of call, but using the grievance procedure is always an option when this can’t solve the problem. I’m guilty of having not been very vocal about my diabetes in the past, but now I take pride in what I manage. It’s hard. How can we expect other people not to downplay the seriousness of the condition when we do the same thing ourselves?
We can explain, but shouldn’t feel embarrassed or apologetic. When our blood sugar is low, we must take a break to do a test and eat something — we can’t simply work through it. It’s time to put our health first, challenge ignorance and ensure those reasonable adjustments outlined in the Equality Act are met.