20 weeks and counting: Education and Work
Me: My previous blogs, counting down to my 50 year diaversary, explained many of the difficulties in keeping blood glucose levels stable. Managing a condition that is affected by so many variables, many of which cannot be predicted or are outside a person’s control, is difficult. With the better monitoring techniques and faster-acting insulins available today, our knowledge of what is happening in the moment may be better but that will not always make it any easier to manage the impact that type 1 has on normal life events.
Type 1 frequently impacted my schooling. Not all the time, but the problems it caused have stayed as vivid memories, due to the embarrassment or frustration caused, as education and particularly exam taking became more critical.
The first major disruption to my education was my initial four week absence from school after I was admitted to hospital at diagnosis. I remember having a hardback yellow text book in hospital with me during my second stay, obviously sent from school via my mother. But, with no specific guidance from teachers and on complete bed rest with blood glucose levels higher than desirable, finding the motivation or ability to concentrate was not easy. My yellow text book covered English and not Maths – I would have coped better if it had covered Maths. I preferred Maths anyway, but it was also a subject that you could pick up and put down more easily. So, when my blood glucose levels were high and concentration was affected, I found it easier to work through stand alone problems than remain engaged with a story, a comprehension or piece of writing.
I think that there were few, if any, resources available to support parents in making the necessary adjustments to home life, let alone for them to share with teachers on how best to manage type 1 in a school environment. Once out of hospital, I remember visiting school with Mum, to meet with my class teacher, before I returned to normal daily lessons. I felt very embarrassed sitting in on a conversation that was all about me, although I didn’t follow all that was said. I presume Mum must have offered a “crash course” to the teacher explaining our new normal and some of the issues to look out for.
Mum: When you were diagnosed, almost 50 years ago, there was nothing available in printed form for us to take home and mull over, to get some real understanding of how to manage your condition. I ended up trying to summarise any possible problems that might crop up when you were at school, and writing out a set of instructions on how to deal with them. We had a session at school, talking with the staff. The instructions were then kept in the school office in a box with emergency rations of glucose tablets and chocolate biscuits. And you were on your own!
I did drum into you the importance of ALWAYS following the rules and ALWAYS having your snacks at the designated time, and not forgetting to take them.
Me: Children tend to notice or comment on differences.
Whether or not it was meant unkindly, I was very aware of the times that I stood out.
On my return to school post diagnosis, rules regarding school footwear were relaxed to enable me to wear open sandals to school. Although sandals were not regulation footwear, I needed shoes that enabled air to get at my badly infected heel, following the pressure sore that had developed at diagnosis.
I ate a mid-morning snack in lesson time. The timing of it could not be varied and it did not coincide with the morning break at school. I was aware of feelings of envy from my classmates and I hated being different. In class, we sat facing forwards at individual wooden desks with lift up lids and I would quietly lift up the lid a few inches when the teacher was writing on the blackboard, trying to take surreptitious bites.
I had regular outpatient clinic appointments, each of which probably caused me to miss half a day of school by the time that travel was also factored in. In preparation for these appointments, I had to undertake 24 hour urine collections. On these days I would carry two large plastic storage containers with screw top lids on the bus into school. The storage containers would be kept in the school office and I would need to collect them before every visit to the toilet, pouring what I collected into one of the storage containers, before returning the containers to the school office.
I had my fair share of hypos in lesson times. I remember coming around from one in particular. It must have been a bad one as I suddenly became aware of my head resting on my arms that were folded in front of me on my desk. I still feel acutely embarrassed by the memory that the lesson was just carrying on around me and that I was so wiped out by the hypo that I had been left to “sleep” through part of the lesson.
With the move to America just before my fourteenth birthday, having adjusted to the very different high school environment, I found I preferred the US system which focused more on continual assessment than end of term/end of year exams. Occasional “pop quizzes” would be sprung on us at various intervals, but with no advanced notice there was less opportunity to get stressed or have to manage the stress related blood sugar increases.
Exams have been the most difficult events to manage with type 1 and have caused difficulties over the years. In the 1980s, when I was taking A Levels, a university degree and then chartered accountancy exams, I discussed the difficulties with the medical professionals. They told me that the stress associated with exams would cause high blood glucose levels and I would be more likely to need to manage that, than hypos.
The stress levels before exams did cause my blood glucose levels to rise. However hard you try, you cannot avoid the stress. Queuing up outside the exam hall, the nervous discussions or swapping of last minute information – whether or not you chose to participate – all added to stress levels. The resulting high blood sugar would leave you walking into an exam hall feeling tired, lethargic and often thirsty. However, taking a drink into an exam hall was not something that anyone did in the 1980s– the bottled water revolution had not started. I also would not have wanted to start the cycle of - high blood glucose, drink to quench resulting thirst, visit the toilet – when I had limited time to complete an exam.
My body’s response to exams was much like the reaction of many type 1s to competitive exercise. When you are on the starting line of a race, waiting for the starter’s pistol to be fired, nervousness is rife and many people with type 1 find their blood glucose levels can rise quite considerably. Once you start the race, nervousness is replaced by focusing on the task and energy is consumed in the activity undertaken: your blood sugar levels start to fall.
When I turned over an exam paper and became immersed in answering the questions, the overwhelming stress felt before starting would gradually lessen to be replaced with intense concentration as I worked to get my answers down on paper as quickly as possible. Most exams lasted for three hours. Your blood sugar can change dramatically within a three hour period. With exam taking, the mental effort would deplete my blood glucose levels – not at the same speed as physical activity, but in a similar way. However, exams were very different from normal classroom situations and it was difficult to replicate the experience in the build up to exams, to allow experimenting with how best to manage it.
Will you always detect a hypo in an exam? Again, I find it interesting to consider this in relation to responses to exercise. In blog 6 looking at type 1 and exercise, I quoted Lumb and Gallen (2009) who recognised that “hypoglycaemia can be difficult to detect during exercise, as many of the symptoms of hypoglycaemia are sensations that are normal to an exercising athlete.”¹ I would say the same can be true in an exam setting. Increased heartbeat, tiredness, headache – you are trying to focus on the task in hand and not reflect on how you are feeling. Are the sensations still exam nerves or early signs of a hypo?
So why not eat regular sugar throughout the exam to counter a potential low? If the sugar is not needed and leads to a raised blood sugar, you can feel very lethargic, consumed by brain fog and equally lacking in energy.
I finished my degree in style! I can’t remember the exact paper I was taking but half way through it, I obviously had a bad low blood sugar. I knew enough to know that I was low and got myself out of the exam room and into the toilets where I burst into tears of panic as I tried to stuff glucose tablets into my mouth. Tony, my university cross country coach was acting as an invigilator. He knew about my type 1, made sure I was as okay as I could be, that I had eaten plentiful sugar and then with tough love he turned me around and told me to get back into the hall and finish the paper. That was his style. I remember in one cross country race a team mate lost her shoe in very muddy conditions and he told her that she should have picked it up and carried on running.
Before I had had a chance to speak to my personal tutor about the hypo in this exam – the first major problem in my three year degree - the lecturer marking the paper had obviously already made contact with her and asked if something had happened to me. Apparently the first two answers were coherent and of a standard they would have expected from me. My final two answers, post hypo, were rather confused. Allowance for difficulties of the kind I experienced has to be subjective and is particularly challenging in examinations with large numbers of candidates, where the examiners do not know the students. At least, in universities, people who know you normally take part in grading decisions: I am very grateful that, without any advocacy from me, the university decided to disregard my final two questions and extrapolate the results from the first half of the paper to give me a grade for that exam.
Thankfully, greater understanding exists today about the difficulty in managing blood glucose levels in examinations. Educational packs are available from both Diabetes UK and JDRF to help schools understand the impact that type 1 may have on a student’s performance and what considerations may need to be taken into account.
“Under the Equality Act 2010, every school has to make reasonable adjustments to help any child who might have a disability, which includes type 1 diabetes, [to get] the grades they deserve because of it. The two main types of help which might be available for a child with diabetes are access arrangements and special considerations. Access arrangements include:
Being allowed to take drinks and snacks into an exam to prevent or treat a hypo or hyper.
Being allowed to bring in their blood sugar monitor and insulin treatment into an exam.
Taking a supervised rest break to treat a hypo or hyper. Supervised rest breaks are where the clock is paused while a student treats themselves. The clock restarts when they’ve recovered.”²
After I passed the different levels of accountancy exams, work became easier to manage than school. I like a routine. It is rather like having continual assessment but having it under my own control. I have regular reporting deadlines and am generally in control of how I manage my work to comply with these; and when I arrange meetings, I can usually avoid scheduling them for times of the day when I am most likely to have problems with my blood sugar. That’s not to say that I spend a lot of time distracted from work and focused on blood glucose levels. The CGM technology means that, when I am at my desk, I have two screens to keep an eye on rather than one. I have my work monitor but also a stand for my mobile phone: the mobile is continuously charging and displaying my CGM graph identifying blood glucose trends, allowing me to micro inject or micro dose carbohydrate as necessary throughout the day.
Just as I am very fiercely independent about my type 1 in the home environment, I have, until recently, been very private about the condition at work – I think for very similar reasons. I do not want concerns to be raised about my capability because of my type 1. A great lack of knowledge and huge level of misunderstanding still exist about the condition. People can easily overlook how serious and complex it is because it is hidden from sight for most of the time. When it doesn’t get in the way, people around you are unlikely to be aware that you are managing the condition and making regular decisions about how to handle it. When it does get in the way, it is easy for that to dominate people’s awareness of the condition. So, for ninety-nine occasions when people are working with someone with type 1, they may be oblivious to their condition, whereas perhaps one occasion where a problem arises may cause mistaken opinions to be formed.
I have tended to share my diagnosis of type 1 with only a few work colleagues, once I am certain that I have proven my ability in any role. I will usually tell my line manager first, as I will need to get agreement for the time that I need away from work for the several medical appointments each year, covering my annual diabetic clinic outpatient visit and annual eye screening, to help identify any early signs of diabetic retinopathy³. I have then tended to tell people in my team – largely because, if they walk in on me when I am doing a blood test at my desk or see my medical technology, they are naturally curious.
I am becoming more open about my type 1. Perhaps this is a combination of having worked for the same employer for the last twenty years and the impact of a series of recent events. My work life was turned upside down in December 2017 when the Director and Chief Executive of the organisation died suddenly. Having been appointed, the new Director and Chief Executive was unable to join until January 2019 and for the year in between, I was the most senior person on site. It was a tough year but gave me the confidence to realise that I should not worry that I would be defined by my diabetes, having held operations together for that year.
I spent a morning off site with the new Director, about four months before she was officially due to start in post, to bring her up to speed on various operational matters. As part of that process, I volunteered the information that I was a type 1 diabetic. I had spent some time talking myself through the possible pros and cons of announcing the condition to her before she had had the chance to get to know me at work, but decided this was as good a time as any. I was nervous about doing so but as I currently volunteer some time with JDRF and want the opportunity to continue to participate in research studies if I meet the criteria, I was keen that all of this was disclosed. Three years later, I can look back and say I should not have worried. However, the issue of disclosure is an area that is often talked about in the community with people’s previous experiences, the work cultures in specific organisations or the personalities of those that they work with having an impact on confidence levels in publicly acknowledging the condition.
It is often said that many positive character traits are associated with living with a long-term condition like type 1. Managing a diagnosis requires adaptability, resilience, determination and problem-solving skills. All of these are very transferrable skills that benefit an employer.
However, managing a condition like type 1 is also a never-ending job. Type 1 is a relentless condition that requires you to be constantly making decisions about how best to manage blood glucose levels taking into account whatever you are doing. When I take my eye off what is happening to my estimated blood glucose readings, they seem to be more likely to go out of range. To be “successful” at managing the condition therefore requires you to be on duty, permanently. It can be very difficult to compartmentalise this requirement to be permanently on duty, so that it only applies to dealing with type 1. It is very rare to get to a convenient stopping point with work at the end of a week and because I am used to never finishing the management of type 1, I need to make a conscious effort not to adopt the same approach to tasks at work.
There is more discussion and awareness today of the importance of both access and inclusion in the workplace. Although the problems faced by type 1s may seem minor compared to the issues that many other people face but they are problems nevertheless. One example of the problems comes with the organisation of a staff tea and cake gathering. It helps to have advanced notice and information about carbohydrate values for such gatherings. I remember hearing, several years ago, that JDRF give all staff a twenty minute announcement prior to any tea and cake gatherings, to allow staff with type 1 the time to pre-inject, to manage the blood glucose rise that would otherwise occur with eating unannounced cake. For many years I have just avoided eating at staff gatherings as I hate to be seen to be awkward. When people don’t understand the complexities of a hidden medical condition, it is very easy for them to attribute the behaviour of colleagues with the condition to awkwardness or attention seeking.
Although I still experience some occasions at work when a twenty minute warning of incoming carbohydrates has not been possible (ice lolly runs in the summer), I find at least that my colleagues have come to recognise and accept that I am likely to ask to see the nutritional information on any packaging to know the carbohydrate value I need to inject for. The lack of a pre-bolus dose of insulin will still cause a blood glucose spike but my desire to be included sometimes makes the hopefully short-term “high” worthwhile.
Notes
1. “Diabetes Management for intense exercise” – Alistair Lumb and Ian Gallen
Current Opinion in Endocrinology, Diabetes & Obesity
April 2009 – Volume 16 – Issue 2 – p150-155
2. Diabetes UK website, viewed September 2021
Exams and Diabetes Management at School
https://www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/schools/school-staff/exams
3. Diabetic retinopathy is a complication of diabetes caused when high blood glucose levels damage the back of the eye. If left undiagnosed and untreated, it can lead to blindness.
