16 weeks and counting: The Emotional Impact of Managing Type 1
Those without diabetes can find it difficult to appreciate the emotional baggage associated with managing type 1. Numerous factors can cause emotional difficulties: experiences at diagnosis, knowledge of possible complications, limitations of the tools available to manage the condition, difficulties in accessing new technology to help manage the condition, possibly unintentional but hurtful interactions with health care professionals or other people, or simply the personality of the person with type 1. I find it hard to judge which is the most important, but I do know that all of these factors have played their part in how I feel about living with the condition.
Experiences at diagnosis
Hospital wards were very different places in the early 1970s from how they are today. Even though I did not have much understanding of what was happening medically, the telling off I received from hospital staff when I expressed my dislike of injections, the brusque interactions and rigidly imposed visiting hours on the hospital ward, the restricted visitors per bed (maximum of two) and the authoritarian doctor patient relationship my parents experienced, made me feel vulnerable. Despite my age, I was very aware of the difficult relationship between the medical staff and my parents. Because I knew that my parents were on my side, many of my early emotions included feelings of distrust of the staff in hospital. I developed a sense that I needed to protect myself. I grew up very quickly.
My experiences in hospital created a loss of confidence concerning the reactions that might follow as a result of any expression about how I felt, and so I kept all thoughts and feelings to myself. The focus of the healthcare professionals was on the physical aspects of the condition with no consideration of the fear, hurt or anger felt not just by myself but by my family as we adapted to a life with type 1.
Limitations of the tools to manage the condition
At diagnosis, managing type 1 diabetes was very basic. My parents were advised to aim for a blue result from urine tests whilst avoiding hypoglycaemia, which could not be identified by a urine test. Brown or orange urine test readings would denote excess sugar that had been removed by the kidneys from the blood stream. The greater the time spent with high blood glucose levels, denoted by these urine test readings, the greater the risk of developing complications.
I am not sure when I first became aware of the additional complications that could follow when glucose levels exceeded a normal range. I feel that I always had a certain level of awareness and fear of what could happen to me if I did not live well with type 1. This knowledge however did not equip my parents and me with the ability to intervene. We could recognise that tests denoting high levels of sugar present in the urine were placing me at greater risk of long-term complications but without more precise monitoring and without the faster acting insulins available today to allow you to correct high blood glucose levels when they occurred, we were left impotent.
Results and Expectations
Access to my first home blood glucose monitor in 1980 provided more information about how my body behaved in certain situations. Keeping a detailed record of blood test results, carbohydrate intake, insulin dosing and exercise enabled me to present what could be a useful set of results at clinic appointments to help discuss approaches to managing different situations.
The monitoring used for managing type 1 can be a mixed blessing. The information is valuable in helping you to understand the impact of different activities on blood glucose levels. However, it can be difficult not to fall into the trap of constantly judging yourself if results are outside the required range. Numerical readings give an absolute measure of your performance. You are comparing yourself to an ideal – the working pancreas of a normal person. Hospital appointments will focus on the problem areas in an attempt to help find solutions but depending upon the approach and language used, you can be left feeling you have failed.
Results have been frequently referred to as either good or bad. For different reasons, either way of describing them adds to the stress of managing type 1. I can follow a constant pattern on consecutive days, with food, exercise, work routine and sleep all remaining the same but my blood glucose levels can vary considerably.
When much of the medical theory has laid out the management of type 1 as a system of following rules that assume fixed relationships between the various factors affecting blood glucose, it can be easy to fail to recognise that the condition is not simple to manage.
Am I at fault, or is it my body that is on a different track today compared to yesterday? Perhaps the emotional difficulties in managing the condition would be less severe if type 1s were told at the point of diagnosis that they are likely to have many occasions where they will struggle to achieve in-range blood glucose values, due to factors outside their control. Throughout much of my diagnosis, I have been told the theory, underlying management practices, without being told how difficult it is to routinely achieve good management in practice.
“In theory, theory and practice are the same. In practice, they are not.”
Dr Albert Einstein
The development of hybrid closed loop (HCL) technology which continually monitors blood glucose levels using a continuous glucose monitoring (CGM) system and automatically adjusts the amount of insulin given through an insulin pump has relieved some of the anxiety of failing to meet expected management targets. Early research undertaken by Dr Roman Hovorka in 2017, using HCL systems with no restricted living conditions placed on participants, enabled participants to achieve 65% time in range. ¹ If type 1 was easy to manage, surely artificial intelligence would achieve nearer to 100% time in range.
Many health care professionals (HCPs) who do not have type 1 have taken advantage of flash glucose monitoring (FGM) technology to wear devices for a two-week period to gain a better understanding of how blood glucose levels behave. This has helped to increase understanding of the daily variability of blood glucose levels even for people with a fully functioning pancreas and has helped to re-set the expectations of many HCPs.
Access to CGM devices has helped enormously to give those with type 1 a better understanding of what is happening to their glucose levels, especially overnight, but also to increase awareness of how difficult it is to maintain blood glucose readings within target ranges.
Does practice make perfect?
Throughout my schooling, I was taught to believe that practice makes perfect. If you repeat an activity often enough, you will become good at it. You learn from your mistakes. This can be a difficult philosophy to combine with managing type 1 because there is no one pattern of management that you can learn, that will be appropriate for every situation.
As a result of the many years through which I have lived with type 1, I have developed a certain level of understanding, recognising how my body is likely to behave in different situations. The general theory tends to be that you make adjustments to your approach only after experiencing results that are out of range for several days. One day of rogue results may be just that.
When significant changes may be needed, however, particularly as you transition through different stages of your life, it can be difficult to unlearn the tried and tested approaches that have tended to work previously.
The menopause has been a good example of this. For a period of about eight years, I needed to be very aggressive with insulin dosing pre- and often post-dinner as my blood glucose levels had an unpredictable tendency to climb rapidly, often linked to hot flushes at this time of day. I was anxious to avoid having blood glucose levels in too high a range for too long and my experiences made me feel that it wasn’t a situation where I could leave the rise for a period of time to “wait and see”. Now post-menopausal, I am at a stage where sometimes the wait and see approach produces better results and if I jump in too quickly to tame a rise, I will pay the price at bedtime as blood glucose levels suddenly start to plummet into hypoglycaemia.
The condition requires constant readjustment which is unsettling, time consuming and exhausting to manage. It can be difficult to persuade yourself that the discarding of old methods that have previously worked is the right approach as you start again from scratch in learning the best way to manage a new phase.
Difficulties in accessing new technology
Research reports looking at the developments in technology to support life with type 1, are showing the significant benefits that technology can provide. Technology offers greater insight and more frequent warnings of the unavoidable fluctuations in blood glucose levels to allow corrective action to be taken before results move far out of the target range. The newer hybrid closed loop (HCL) systems achieve at least the same but usually, significantly better results than people with type 1 can achieve on their own. They also help to relieve some of the significant burden and relentlessness of managing the condition. Unfortunately access to these technologies in the UK is very low. JDRF’s position statement on access to technology concludes:
“Having access to the right technology can be life-changing. It can help people with type 1 diabetes better manage their condition and can save the NHS resources through reduced long-term complications and acute events. Current access levels are low. People with type 1 diabetes deserve the best technology currently available to help them self-manage their lifelong condition.” ²
The difficulties that I experienced in the mid-2000s with managing type 1 through the perimenopause, sought me to request access to an insulin pump. Having been seen only in primary care for many years, I was referred to my local hospital which considered my request. Over the length of my diagnosis, the two years in which I battled to be granted funding for a pump were the worst two years of my diagnosis.
My experience of living with type 1 has shown me that it is a condition that is primarily left to me to manage, as the patient. I estimate that I have a maximum of 2 hours contact per annum with providers of either primary or secondary care, which should include blood tests, blood pressure check, eye screening, kidney tests, foot checks and the opportunity to discuss results and any specific concerns with a specialist. To manage my condition, therefore, I need to be my own specialist. By the time I ask for help from HCPs, you can be certain that I will have already experimented on myself, trying everything within my repertoire and any new ideas that I feel may work to solve the issues I am experiencing.
Following referral for assessment for being provided with a pump, I wanted to give the joint brain power of the team (I included myself in that group, bringing different but equally important knowledge to that provided by the HCPs), the best chance of finding a solution to the problems I was experiencing. I went to my first hospital appointment with very detailed written records. I had documented everything in case I was missing something obvious – 8+ blood glucose tests per day, timing of hypos and hypers, carbohydrate eaten, insulin injections (regularly 6+ per day), exercise taken and any health considerations covering infections, menstruation, hot flushes and so on. I hadn’t maintained written records for many years. However, doing so was the best way to help show how I was struggling – or so I thought.
I had to endure two years of three-monthly appointments before I was finally approved for pump funding. In daily life, I seemed to be caught in a never-ending loop where I had bad mid-morning hypos and blood glucose levels that rose from mid-afternoon to a range of between 15-17 mmol/l pre-dinner (three and a half times higher than a normal blood glucose level). I followed prescribed changes to long-acting insulin doses. My HbA1c was rising but was still just below 7%. I was being assessed on this absolute reading every three months without consideration being given to the difficulty of living day-to-day with these roller-coaster swings in blood glucose readings. As National Institute for Health and Care Excellence (NICE) guidelines require HbA1c readings in excess of 8.5%, or disabling hypoglycaemia, to obtain pump funding, I was told I did not qualify. I was further told that if I used my frequent mid-morning hypos as a reason for requesting pump access, I was likely to lose my driving licence.
I still feel very angry about this experience. It had a huge impact on me, my energy levels, my ability to function in everyday life and on the lives of my family. I did not need the help of others to treat my hypoglycaemia but it had an impact on my work day, my confidence and energy levels. I imposed a driving ban on myself mid-morning, as hypos would hit very quickly and I didn’t trust myself behind the wheel of a car. On occasions, I had to ask other people to take my children to commitments, so that I could avoid driving at this time of day. I didn’t want to feel like a burden or incapable of fulfilling the normal role of a parent. I wanted to be able to be a part of all aspects of my childrens’ lives but this was not always possible during this period. I felt completely alone. The HCP I saw was acting as a gatekeeper, not even willing to acknowledge the problems I was experiencing. I appreciate that the NHS has many funding issues but I was left feeling that the HCP had an unwillingness to recognise the lifestyle impact of my condition, and the resulting sense of hopelessness that I felt; I could find no defined process to follow to help reach a satisfactory conclusion.
I was finally granted access to pump funding in 2010. It was on the condition that I went to speak to a psychologist who specialised in type 1 diabetes. If she felt that I was ‘safe’ to be granted a pump, the funding application process would be started. The HCP continued to be unwilling to recognise the failure of current treatment to provide satisfactory results, I would receive a cheery “see you in three months’ time” at the end of each appointment in which no progress was achieved, and so the referral felt like a punishment. I am fully in favour of access to emotional support in managing type 1 but this should not be deemed to be the solution when the problems arise because the basic treatment regime cannot deliver the management needed. After my first meeting with the psychologist, a person willing to listen to the impact of the issues that I was facing, she confirmed that she had no problems with approving me for pump therapy. The HCP that I saw for the two years, who felt it important that I maintained the continuity of care with her at all hospital visits, told me after the event that she was concerned that I would kill myself if provided access to a pump. I think she believed that, because I was now injecting six or so times a day, to chase down the high blood glucose levels mid-afternoon, a pump providing insulin on tap would be a risk. This view however failed to recognise that my behaviour was due to the inadequacy of the regime that I was on and that I was trying to maintain good health, bring down high blood glucose levels and therefore limit my risk of complications.
I didn’t feel lucky at the time but when you look at how few adults in the type 1 population gain access to NHS funded insulin pumps, let alone CGM devices, I am grateful to now have one. “Uptake of insulin pump therapy has reached a plateau in the last few years as captured by the National Diabetes Audit and remains at around 15% in adults and 32% in children and young people in England and Wales.” ²
I have self-funded a CGM since July 2014. “NICE has clinical guidance on the provision of CGM to children and young people and to adults. Those who meet the criteria may be able to access funding for CGM but as clinical guidance is not mandatory, there is no obligation on NHS Clinical Commissioning Groups to provide funding. We estimate less than 5% of the type 1 population in the UK currently has NHS funding for CGM (there are no UK-wide statistics available).” ²
Language
A lot of misunderstanding exists about all types of diabetes. I am not knowledgeable about other medical conditions and therefore do not expect other lay-people to understand all the intricacies of managing a diagnosis of type 1. However, I would like to be able to be confident about the possibility of having non-judgemental questions or conversations, in which people show an interest in learning more. Language can have either positive or negative connotations and when you are working hard to manage a chronic condition that can constantly fluctuate without warning, the insensitive comments of others are hurtful and make it harder to reach out for support when you are experiencing difficulties.
Fairly soon after I had married my husband, I remember a comment my mother-in-law relayed to me concerning a conversation she had had with someone she knew. For some reason the topic of my type 1 must have come up in conversation and she reported how this person had said how wonderful it was that Neil had “taken me on”. I am sure that my mother-in-law was equally surprised by the comment. My experiences at diagnosis and subsequently have meant that I generally clam up about the condition and my feelings. I know that I am not a burden but I cannot lose the ghost of that comment. Is that how I am seen by people?
I participated in the Diabetes UK London Bridges Challenge in 2016 with a group of fellow type 1s I know from the online community. We provided cheap laughs for a busker trying to tell jokes as we walked past his pitch in our branded t-shirts. We were told in no uncertain terms that it was a shame that we had left it so late to start walking - if we had started sooner, we would not be diagnosed with diabetes.
Media headlines frequently purvey misinformation that allows people to believe that they have an understanding of diabetes and those headlines are frequently converted into one liners and banter; for example: “Let’s face it, cake is ‘diabetes on a plate’”. I have been told that I should brush off comments and avoid being so sensitive. I try but these comments are everywhere in daily life.
For the record, type 1 diabetes is an auto-immune condition. My body attacked and killed all my insulin producing cells and nothing I did or could have done would have altered the course of my diagnosis.
In clinical settings, referring to blood glucose readings as good or bad is judgemental. Hypos and hypers make me feel awful and if I am on the receiving end of comments like this, I feel HCPs are forming opinions on poor decision making as opposed to recognising the many difficulties present.
I have tended to be very private, even with my immediate family, about my blood glucose readings or instability. In the early years, my reticence was to protect myself from personal feelings of failure and then to protect my children from any worry – I was anxious to ensure that they felt secure in my care. Now that they are adult and can see that I manage the problems when they occur, I am getting better at sharing experiences and feelings but I still find it hard to escape from the belief that I am somehow at fault when I am struggling to manage glucose levels.
There has been a very positive “Language Matters” campaign over the last few years, recognising that “people with diabetes internalise messages from the media, from those around them, but most of all from their healthcare providers. When these messages are perceived negatively, whether it is intended or not, this can lead to feelings of shame, guilt and resentment.” ³
“As healthcare professionals we must recognise the power of our words. There should be no space in the consultation for blame, shame or accusation. Empathic, supportive language is the cornerstone of good diabetes care. Let’s acknowledge the sheer amount of effort diabetes demands of the individual and celebrate every little success.”
Dr Emma Wilmot, Consultant Diabetologist ³
A better future
The results of a survey published by Diabetes UK in November 2017 stated that “participants told us that diabetes affects their emotional wellbeing.” Chris Askew, Chief Executive of Diabetes UK, said: “Effective diabetes care requires that a person’s emotional needs are taken into account alongside their physical care needs.” ⁴
I hope with greater awareness of the importance of celebrating the successes, offering emotional support and improving access to the tools already available to manage the condition, the burden of life with type 1 will become more manageable.
Notes
1. EurekAlert! website, viewed November 2021, News release 3-Oct-2018
Closed-loop “artificial pancreas” insulin delivery system offers better glucose control and reduced risk of hypoglycaemia
https://www.eurekalert.org/news-releases/900091
2. JDRF website, viewed November 2021
JDRF UK position statement on access to type 1 diabetes technology
3. Language Matters Diabetes website, viewed November 2021
https://www.languagemattersdiabetes.com/
4. Diabetes UK website, viewed November 2021
Three in Five People with Diabetes Experience Emotional or Mental Health Problems
