To what extent one needs to be open about their diabetes is a much debated topic in the diabetic community. Some believe that the disease is strictly a private matter, while others believe that transparency about their diabetes is essential in order to feel safe. In the extreme case, one can risk their own life by not educating others about their illness, but is it right to “force” private information on others in order to feel safe?
Written by diabetes coach Hildegunn Fossheim
Ignorance about diabetes isn’t bliss
We can probably all agree that the general knowledge about diabetes is too low. Our society is plagued with misconceptions and ignorance about diabetes based on the belief that diabetes is caused by eating too much sugar. The word diabetes seems to instantly trigger responses like “fat people”, “McDonalds”, “unhealthy lifestyle” and “self-inflicted”. And let’s not forget statements like “That person is one twinkie away from getting diabetes”, “Are you sure you should eat that piece of cake, don’t you have diabetes?” or “You’re not fat. How can you have diabetes?”.
Due to the rampant prejudice and misconceptions in our society about diabetes it can be discouraging having to tell new acquaintances about your disease. One expects to automatically be bombarded with a number of ignorant statements that requires endless energy and patience to clarify. When one ignorant statement is corrected another one is blurted out. Though I will claim that the worst offenders are the ones who don’t say anything out loud, as they are the ones that you don’t have the opportunity to correct. At the same time it is easy to feel that by being open about your illness you become “the person with diabetes”. One seldom likes to be defined by one’s illness. You aren’t diabetes, you have diabetes.
The importance of transparency
For some, it might feel somewhat too intimate to share information about your health to others, even to people who surround you for the majority of the day. Let’s face it, you don’t choose who your classmates or colleagues are, so the chance of them being your first choice for a confidant is slim. Especially when starting new relationships, it’s natural to want to de-dramatize your disease as much as humanly possible. You don’t want people, most of all strangers, to be constantly worrying or checking up on you all the time. You also want to be perceived as the capable and independent new co-worker, not the charity-case who needs constant supervision.
On the other hand, one can’t escape the fact that lack of information in most cases hurts more than it helps. This is especially true when it comes to your diabetes. You can, at worst, risk your own life by not including those around you, even though they are colleagues or classmates that you wouldn’t normally feel like sharing your privacy with. Yes, most people most likely don’t need to know every awkward detail, and the most crucial part is to make your immediate social circle familiar with your diabetes. Though is no denying that the more “average Joes” that are educated on diabetes, and the more they know about the disease, the more likely it is that diabetics can quickly get the help they need in everyday situations – when somebody goes into a hypo at the gym, at the grocery store, or just crossing the road.
If you are uncomfortable with being open about your diabetes, my advice is still that it’s vital to share the minimum basic information that can save your (and others’) life with the people you interact with on a daily basis – even if you do not socialize with them privately. If you are insulin dependent, you should at least alert people to the fact that your body can’t produce insulin by itself which requires you to inject insulin before every meal in order to avoid a diabetic coma, and how they can help you get your blood sugar back up in case of an hypo. In addition, inform about the symptoms you get in case of low blood sugar levels, emphasizing that you usually have “full control” and that they don’t need to worry.
However, I will argue, that it’s even more important to confide in a few individuals you trust about the daily challenges you have. The challenges surrounding diabetes are many and to have a few intimate relationships that have a greater understanding for your situation can be crucial for your wellbeing. For many spouses, partners and family members it can feel safe to be invited to a diabetes control, to get a better understanding for what you’re going through. I myself am married to a man with diabetes type 1. When we have chose to ignore the diabetes, we have both learned that the disease is definitely not a team player – the more you choose to ignore it the worse it usually gets, thus making diabetes even more difficult than necessary. It’s been safest for us as a family when both of us are engaged about the diagnosis that plays a major role in our daily life.
Spread your knowledge
Fortunately, the truth is that most people don’t blurt out arrogant comments about diabetes to deliberately make you uncomfortable, they simply don’t know any better. If we want to change attitudes related to diabetes, it’s our job to start with the people around us. If we want the general public to understand what diabetes is, stop using out-dated terminology, stop ignorant statements and the judgmental gazes at public restaurants indicating that they are pretty sure it is a heroin syringe you are injecting, we must all do our part.
The breeding ground for prejudice is usually ignorance. The only way to combat ignorance is to spread knowledge. We have a greater chance of spreading knowledge, thus preventing prejudice, if we take a stand when we hear false statements or ignorant “jokes” about diabetes. Refer to legitimate sites about diabetes, and make yourself available by answering the questions that others may have.
Personally I think everyone gains a lot more on giving too much information than too little. I say YES to infinite and good information about diabetes to everyone. What do you say?