More often than not a diabetes diagnosis is experienced as devastating; not just to the patient but to their loved ones as well. Even though the condition is manageable, and it is possible to live a life full of well-being, a diabetes diagnosis comes as a shock and ushers in all sorts of changes. Association for Dietetics in South Africa (ADSA) spokesperson and registered dietitian, Jessica Oosthuizen describes it as a ‘rollercoaster ride of a diagnosis’, full of stress and anxiety for the whole family – and she should know, she was diagnosed herself with Type 1 diabetes when she was thirteen years of age.
A host of challenges faces the family when a member is diagnosed with diabetes. With more than 1.8 million cases of Type 2 diabetes in South Africa in 2017, the wider impact is significant in our country. “I think for most families shock is the first feeling,” Jessica says. “Family members are also faced with the emotional, financial and physical adjustments that need to be made with a diagnosis. These feelings can weigh on family members, and stress and anxiety are common challenges faced by parents, siblings and other family members who are involved. One of the biggest challenges is the confusion and uncertainty. It is very daunting being diagnosed with a condition that you don’t know very much about. Even though patients and family members should get a good explanation of what diabetes is and how it can be managed, this amount of information may be very overwhelming and often very little is taken in initially.”
November is Diabetes Month, and the focus is ‘The Family and Diabetes’. Jessica points out that the impact of a diabetes diagnosis is typically more acute when the patient is a child. “The challenges faced with the diagnosis of diabetes in a child is different,” she says. “The parent or caregiver will probably be much more involved with their day to day care as it may take some time for children to comfortably be able to measure their own blood glucose and inject themselves with daily insulin injections. For children who are of school going age, there generally has to be a third party helper involved which can cause added stress and anxiety for a parent or caregiver as they can’t have control over the situation at all times in the day. Parents may also feel frustration, guilt and anger, as their child’s hurt and pain is something that they are not able to fix.”
Young or old, Type 1 or Type 2, what diabetes does bring about are lifestyle changes. As Jessica points out: “With Type 1 Diabetes once you’ve had the diagnosis, there is never a holiday or break from it.” While the treatment regimens do differ between Type 1 and Type 2 Diabetes, both kinds of diabetes demand discipline, constant thinking, planning and control. The patient and the family need to understand a number of things including how the medication works; how many carbohydrates they can consume, and how often. For some, these lifestyle changes can be completely overwhelming. In addition, having a chronic illness like diabetes is expensive and the family may well suffer from financial stresses, which brings a different dimension to the anxiety experienced.
Ideally, a team approach can deliver vital support to the family. Over time, diabetes patients may need access to various diabetes experts including an endocrinologist, a diabetes educator, a psychologist, a dietitian, a biokineticist, a podiatrist and an opthalmologist. As the family moves from shock to acceptance, regular touching base with the different members of their team helps them to gain an holistic view of diabetes care. “If it is possible, regular follow ups with your doctor or diabetic educator are essential to fix any problems that the patient or family are facing in a timeous manner instead of trying to fix a problem months or years down the line. There are also diabetic support groups such as Diabetes South Africa and Youth with Diabetes, and social media platforms that patients and family members can join,” Jessica advises.
Perhaps, the biggest challenge is that of normalising life after the diagnosis, so that the chronic condition is well managed and does not get in the way of day-to-day life. “It is important for patients and families to know that while diabetes is a chronic condition that requires daily discipline, control and organisation; it is possible to still live a completely normal life,” Jessica says. “After diagnosis and implementing treatment, it is useful to note that everyday can be completely different as blood glucose readings can be influenced by a number of factors such as exercise, illness, sleep, stress, caffeine, alcohol, types of food and the timing of medication. By taking every day as it comes, you will learn something new that can be used to improve your control and become adept and efficient at managing your condition.”
Jessica advises those who are newly diagnosed to keep a diary recording blood glucose readings, the amount of insulin used and the timing of insulin doses, as well as all food intake and exercise. While it is time-consuming, this journaling doesn’t have to be done forever and it does help to provide a clear and accurate picture, as well as insights into what is working well for you, and what isn’t. This is important because every diabetic’s experience is completely individual. There are also mobile apps available such as FatSecret, Carbs & Cals, mySugr and MyFitnessPal. Strategies such as these empower the person with diabetes to set targets and chart their progress towards managing their condition in the most optimal way. Family support for gaining control over the treatment is vital for the person with diabetes, and helps them to get on the road to wellness and enjoy their life to the full.
For those who are newly diagnosed or who have family members that have recently been diagnosed with diabetes, you can get support from a registered dietitian in your area by visiting www.adsa.org.za.