When the news about their child having developed Type 1 Diabetes is first broken to parents, especially the fact that this condition needs life-long management necessitating multiple daily injections and finger pricks, the initial reaction is one of shock, giving way to distress and anger. Parents feel angry that their child would be subjected to painful multiple insulin injections everyday and this would have to continue for the rest of the child’s life. Not just this, the stress of managing diabetes, which includes constant monitoring of blood sugar levels, planned diet and exercise makes a huge demand on the child’s time as well as their time and places a great stress upon the family. Fear and anxiety often haunt the parents because they are afraid of hypoglycemic incidents, which are very frightening, especially if the child goes into convulsions. Panic is the first emotion that springs up when the child is seen going into hypoglycemic episodes because it is important to get some sugar into the child’s system on an urgent basis, which would be difficult if the child is unconscious.
While diabetes management imposes a lot of stress on the entire family, the reaction of the T1D child to the condition warrants more research and study, especially given that the world has witnessed a sudden and drastic transformation in a matter of a few years, given the mega digital advancement that has revolutionized every field. In today’s complex global ambience, the T1D child is at best a lost child, lost in the complexities of the countless emotional and physical issues that beset today’s children at all levels. Children from countries that are not advanced enough to offer digitally advanced devices that make diabetes management a little easier continue to languish in stress, anxiety and depression, while their counterparts in advanced countries are able to progress far better in holistic development as the new era devices of insulin delivery systems and blood glucose monitoring devices are not only nearly pain-free, but also provide accurate information and help in keeping the sugar levels to near normal levels.
The T1D child has to not only focus on learning all that the peers are learning, but has to additionally learn to manage the diabetic condition. Management of diabetes requires a lot of discipline and self-control, which is difficult for a young child. The T1D child has to contend with several challenges, apart from the daily injections and finger pricks. The child has to be meticulous about having snacks at regular intervals during school hours, may need to use the rest room often or have frequent sips of water. The T1D child looks as normal as other children and therefore fellow students may not understand their special needs. Hence they may be subjected to ridicule or bullying. In some Indian schools, even teachers do not exhibit understanding of the T1D child’s special need for frequent snacks and water. Children may be forced by their friends to eat foods or portions that may increase the sugar levels of the child. The T1D child may become involved in physical exercises during play, which the insulin planned for them may not be sufficient in countries like India where most T1D kids are still on insulin injections. This may lead to hypoglycemic episodes in school. The T1D child may also feel that their friends are free to eat, play or do whatever they want and may feel constrained by the demands of maintaining a strict regimen. All these impact the T1D child in many ways.
Threat of Hypoglycemia
Another constant source of anxiety for the parents and the child is the threat of hypoglycemia or low sugar levels which may happen because snacks are not eaten at the proper time or more insulin has been injected in anticipation of greater physical exertion or portion size of the food. A child going into hypoglycemia exhibit behaviors that can be perceived as rebellious or cantankerous. There is a marked shift in the change of the behavior of the child with a quiet child becoming aggressive or an active child becoming quiet when the sugar levels dip. It becomes imperative for the parents to educate the teachers in school to observe changes in the behavior of the child and administer sugar based liquids immediately if the child seems disoriented, confused and exhibits behavioral changes. We should also enlist the support of the child’s friends and fellow students by educating them about symptoms of hypoglycemia. In Indian schools where there are many students in a class and the teachers are overburdened with academic responsibilities, parents still find it difficult to establish effective communication with the school authorities and enlist their support in monitoring the child. We have a long way to go when compared with advanced countries where schools are most sensitive to the special needs of children. Hence it becomes important for parents to maintain constant touch with the class teachers every year, visit the school frequently and intervene when unsavory incidents happen due to a lack of understanding on the part of fellow students or teachers.
During adolescence, the issues may seem to be more magnified because puberty brings with it greater mood swings and behavioral challenges, especially when sugar levels fluctuate. For girls, the challenges are more, with the onset of menarche or periods as hormonal fluctuations impact behavior, emotions as well as sugar levels. The adolescent T1D girl experiences greater emotional upheavals during the teenage years. Maintaining sugar levels becomes challenging and often insulin may need to be injected more often. While exposure of teenagers to alcohol is still at a nascent stage in India, T1D adolescents who go into hypoglycemia may be mistaken to have consumed alcohol or drugs as they seem disoriented and confused.
Families with a T1D child may necessarily have to adopt a healthy lifestyle for all members, continuously monitor the T1D child and educate them to be responsible for managing their diabetes, keep constant touch with the school authorities and help the T1D child lead as normal a life as possible, encouraging them to follow their passion and interests, play a sport they like, go for school trips after ensuring that there is a teacher to constantly monitor the child, take the child for regular check-ups with their doctor and also engage the child in diabetic support groups like the one Dr. Mohan’s Diabetes Specialities Centre conducts. There are also several online support groups which the parent may scrutinize and pick up one that is suitable for their child. Let us not forget that as parents we are responsible for the healthy upbringing of our children and T1D child is not an exception. The final goal should be to enable the T1D child to take care of themselves impeccably and follow their passion as any other child should do. Holistic development, health and happiness should be the goals for the upbringing of any child and T1D child is no exception.
It is important to understand that Type 1 diabetes mellitus is an autoimmune disease caused by the destruction of the beta cells by our own cells in the body, resulting in loss of insulin production. Hence T1D children are at increased risk for other autoimmune diseases. Therefore it is imperative that parents recognize the importance of educating the child to adopt a healthy lifestyle, and maintain a strict regimen as far as food, exercise and insulin injections (or delivery, if digital) are concerned. Autoimmune conditions are also triggered by stress and therefore stress management becomes imperative right from the beginning. Parents have to ensure that the family ambience is stress-free, educate siblings about keeping the home environment free from stressful situations and sibling fights, ensure that the school does not impose greater stress on the child and also keep an eye on all other individuals who are in contact with the child such that the child is not exposed to unnecessary stress or distress. Stressful family interactions are surefire ways of elevating the sugar levels of the T1D child. The parents themselves should not be overprotective or rigid and controlling but enable the child to accept the condition and seamlessly evolve in taking responsibility for maintaining their health.
During adolescence, families should make the T1D child feel secure and loved unconditionally. Hence transparency and open channels of communication are necessary for the emergence of trust and faith in the family. Parents should understand the mood fluctuations of their adolescent T1D child, and patiently guide them to take ownership of their health status, gently urging them to take responsibility for self-care involving regular monitoring of blood glucose levels, following dietary guidelines and a sport diligently and also making insulin adjustments to suit their requirements. Hormonal fluctuations may necessitate frequent visits to the diabetic doctor and follow their counsel.
This is also the time when the young adult will experience depression and anxiety disorder, and sometimes eating disorders. It is difficult to understand depression because it shares similar symptoms with diabetes symptoms such as fatigue, weight loss, memory issues and loss of concentration. Anxiety symptoms mimic hypoglycemia such as palpitation, disorientation and confusion, body tremors, fear etc. It has been seen that eating disorders and reduction of insulin are prevalent among young girls who have body dismorphia.
We need to understand that T1DM is a chronic and life-long condition with immediate consequences of hypoglycemia and the strong probability of developing co-morbidities over the years, which places a huge stress on the T1D individual and the family. T1D individuals appear normal and hence their special needs are not apparent to the community. Education of the people in the community who come into contact with the T1D child or person is important in the interest of not just the child or the family but the community as a whole because with just a little support, a T1D individual can contribute a lot to the community. Looking at it from the human rights angle, they deserve to live as fulfilling a life as any other individual. For this a lot more sensitivity toward and acceptance of persons with special needs are important. We need to educate the society and the world at large continually till such a time when persons with special needs are able to live without being judged, discriminated against or deprived of opportunities to grow, work and evolve.
Note: In this series, I will be putting down facts and events that have happened to me as a matter of fact. Anything I say in these articles is based on my own understanding and experiences and not on any scientific research. I would also like to mention here that I would be drawing upon those experiences of my eventful life, which I believe are relevant to the discussion of the emergence of autoimmune conditions in my child, who we think is different from many other children. I will be trying to make it as relevant to parents of T1D children as possible, but with a plea not to infer anything, compare or follow any of the practices we as a family followed. Simply because, every family is different, every child is different and so are circumstances. The takeaway should be confined to the existence of various possibilities, opportunities and a positive approach toward creating a fulfilling life for your child.