Dr Louise Johnson explains the difficulties experienced by teenagers with diabetes, including diabetes distress, and how sharing on social media helps them.
Diabetes is currently still a chronic disease with continuous treatment and lifestyle adjustments. The good news though is that rapid technology improvements will power a paradigm shift. For this reason, in the future our views should change. But until such time, we must still regard diabetes as a chronic metabolic disturbance.
Adolescent years are the most challenging time in life. Not only are there physical changes but also emotional changes. In a teenager with diabetes this will be the most difficult time to control glucose. The reason is due to the interaction of all the hormones that are also affecting diabetes. These hormones are growth hormones, oestrogen, testosterone and cortisol. On a positive note, it’s worth mentioning this difficult period peaks at 19 years; thereafter it should be a lot easier.
In a study (Tanenbaum ML et. al) on diabetes and technology (social media); an analysis of teenage patients in a certain population was used. Looking at the amount of participants that posted on social media and the reasons behind it, it was found that 105 participants (51,5%) posted on their health in the previous six months. Of these, 80 (76,2%) posted about mood and 62 (57,1%) posted on wellness and prevention, while 44 (41,9%) posted on acute complications and only 13 (12,4%) posted on chronic medical conditions. Only 10 (9,5%) posted about their sexual health.
The reasons teenagers were posting were:
• To connect with others with similar conditions (43,8%),
• Seeking advice (41%),
• Looking for support (31.4%),
• Share their health issues (26,7%),
• Thought it was fun (22.9%),
• Wanted to search for additional treatment (13.3%).
The social media apps that the groups of teenagers used most were:
This interaction (in this case by sharing about their health) was shown to improve their awareness about their disease. The teenagers reacted to social media comments by testing more, eating correctly, taking insulin more regularly and exercising more, etc. Overall, the use of these social media platforms by teens with Type 1 diabetes helped their HbA1c decrease by 0,4% .The important point is interaction with someone (even unknown persons) improves health.
The study identified four types of people:
- The D-embracer endorses barriers and overcomes them. They have a high uptake on devices and have low diabetes distress. The target for this group is only maintenance on information.
- The Wary Wearer has numerous barriers and is resistant against technologies (insulin pumps, continuous glucose monitoring (CGMs), etc). They also suffer from a high amount of diabetes distress. To target this person, education and problem-solving is important.
- The Data Minimalist has an average tech attitude and doesn’t want more info. They have an aversion against CGMs and have low diabetes distress. To target this group, education and specifically technology problem-solving is needed.
- The Free Ranger endorses few barriers. They have a negative attitude against technology and do not like new devices. They also have above average diabetes distress and worry about low blood sugar. The target treatment would be to provide a pump or CGM device as a temporary solution and teach them problem-solving.
Change in treatment for adolescence years is needed
One of the points that was raised in this study was the fact that change in treatment is needed in adolescence years. Most teens feel that they want to take control of their diabetes. It is important for parents to realise this and thus hand over the care to them. This can be done in different ways. One example is a family meeting, once or twice a week, to discuss difficulties surrounding diabetes.
DiabetesWise.org is a good website to help you determine if your device is still compatible for your unique lifestyle. This information will be available soon. In the meantime, patients can register.
Essential points for teenager with diabetes to remember:
- Blood glucose is just a number.
- Any number is a good number because it is data and data is good. There is no such thing as a bad number.
- It is not you that isn’t compliant. It’s your pancreas that isn’t producing insulin. Therefore, your pancreas is not compliant.
- Your blood sugar numbers are not bad because you are bad but rather because your pancreas is lazy and not performing.
- You can make a difference by substituting insulin to help your lazy pancreas.
- Keep trying until you own it. For example, eat the same pizza (once a week) and adjust insulin until the two-hour after pizza glucose value is on target. Pizza does count as ‘wrong food’ but can be eaten if you inject accordingly (with insulin) to counteract the rising glucose.
- It is essential that you have a good partnership with a friend, parent, or even your doctor. A partner is there to support you. A great partner will take time to learn about diabetes, buy healthy food, and even exercise with you. Moreover, they will gently remind you of your medication, they will understand and support your emotions. They will also respect your autonomy. What any partner should not do is: nag, argue, shame you when your glucose levels are high and they should never undermine your autonomy.
What is diabetes distress (DD)?
DD refers to the worries, concerns, fears, and threats that are associated with struggling with the demanding and progressive chronic disease – diabetes. In addition, the management, threats of complications and lack of leading a normal lifestyle are included in this mix.
DD is an expected response to having diabetes. It does not fall under psychopathology, nor is it viewed as a co-morbid disorder or condition. It is simply the emotional side of having diabetes.
Signs of DD
- Feelings of weakness and hopelessness.
- Excessive fear of hypos or complications.
- Avoidance – Who me? Everything is fine!
- Burnout because of all the management tasks.
- Even those with excellent or good management can present with high DD. Not just those with poor management.
- Anger and frustration with providers, distrust, hostility, and even no-show for appointments.
It is noteworthy to realise that DD has a high prevalence among both Type 1 and Type 2 diabetes. The values range from 35% to 42%. It does not disappear on its own and can become chronic, and needs treatment. DD is highly responsive to treatment.
One must bear in mind that it should be distinguished from depression.
- Focus on the change of medication or complications that may have appeared.
- Talk to the patient about the new treatment.
- Use of interactive groups led by an expert or psychologist.
- Concentrate on the patient more than on the glucose numbers. It is important to be an active listener.
- www.diabetesdistress.org is a useful website for additional information and assistance with diagnosis.
Tanenbaum ML, Hanes SJ et. al. ‘Diabetes Device use in Adults with type 1 diabetes: Barrier to uptake and potential intervention targets.’ Diabetes Care 2017; 40: 1-7
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Dr Louise Johnson is a specialist physician passionate about diabetes and endocrinology. She enjoys helping people with diabetes live a full life with optimal quality. She is based in Pretoria in private practice.