Relating to family and friends

How to address myths and misunderstandings

If you live with type 1 diabetes (T1D) or have a loved one with this life-altering disease, you know it is not the most easily understood condition. There are myths and misunderstandings floating around that may bother you at times, and your loved ones and colleagues might not fully appreciate the challenges you are going through.

Whether you are newly diagnosed as an adult, or if you developed T1D as a child, relationships in the workforce, at home, or with friends can raise many questions. The following section looks at issues all people living with T1D face at some point, and how to address these concerns with your family, friends and colleagues.

Helping your partner and family relate to your diabetes

You may find that your loved ones show their concern for you in ways you find irritating. For example, they may constantly ask how you feel or whether you need to have something to eat, test your blood glucose, or take your insulin. While they are likely to be doing this with the best of intentions, it can place pressure on your relationship. The best way to address this behaviour is to explain how it makes you feel. Find a good time to talk about it calmly and openly. Misunderstandings about T1D and how it is managed can also cause friction, so you may consider taking your family member with you when you next see your endocrinologist.

Friends and colleagues

Other people, even those closest to us, often don’t understand what having T1D means. Talking about how you discovered your diabetes and how you treat it can be helpful. Friends who know about your diabetes can be a source of support. Those who are willing to listen to how you are feeling – even if they don’t have T1D themselves – may help you better adjust to living with it. Being open with relatives about your experience will make it easier for them to understand what T1D is all about. Friends and colleagues can also offer practical help when you have low blood sugar, or in other situations.

Meeting new people

Once you have lived with T1D for some time, you will have to decide the right moment to tell new friends and colleagues. While it can seem embarrassing to bring your diabetes into the conversation, not doing so may be even more difficult or awkward later on. For example, new friends and colleagues may misinterpret signs of hypoglycemia if they don’t know you have diabetes. While you may not want to disclose your condition at your first meeting, it is often easier to do so sooner rather than later. Depending on how you feel, you might want to simply explain that you have T1D and that you need to inject insulin. You might consider letting them know about low blood sugar and what to do when this occurs.

One thing nobody warns you about is the things people may say or ask. Sometimes these comments will seem insensitive, ignorant or unkind. It’s best to be prepared and reflect in advance as to how you should and should not reply.

1. Just because it is on television doesn’t mean it is true

If you see, hear, or read something that you think is interesting but you’re not entirely convinced about the accuracy, contact someone you trust, such as your endocrinologist or diabetes educator, to inquire. JDRF will usually make a statement on its web site (jdrf.ca) if something is relevant to the T1D community, so make that a bookmark and check it frequently.

2. Making sense of “breakthroughs”

You open the newspaper and there is yet another news story about a diabetes breakthrough. Is it a real cure this time, or just another bit of interesting science?

The truth is probably somewhere between the two. Researchers face the constant challenge of publicly explaining complicated research results in the simplest way possible. They are often pressured to emphasize the importance of their breakthrough, but also to explain their findings in 200 words or a 30-second sound-bite.

The reality of the research process is that the average “breakthrough” can take years to be translated from a laboratory bench to a therapeutic treatment. That’s not to say that a cure won’t suddenly be found, but it’s important to recognize that most research reported in the media is more likely to be an important step toward finding a cure, but not necessarily signaling the end of T1D in our community. Keep an open mind, and if you have any questions about a research finding, contact JDRF for more information.

3. Media and public (mis)understanding

Diabetes is a condition that is featured heavily in the media. This has been driven by a number of factors — dramatic increases in incidence of type 2 diabetes, government focus on preventative health, and a spotlight on obesity, to name a few. While diabetes is always in the news, it’s not always portrayed accurately, which may affect the public’s understanding and awareness of T1D.

The most common misunderstandings are caused by confusion between T1D and type 2 diabetes. Journalists will often generically refer to “the risk of diabetes” when writing a story about obesity, or include images of overweight children when showing a television story about T1D. Understandably, this can result in feelings of frustration or anger by members of the T1D community.

As anyone living with T1D knows, it is different from other chronic diseases. It requires continual self-management, as well as guidance from your healthcare team, and it’s easy to feel overwhelmed at times. Living with T1D can be stressful, but the support of family and friends will help keep you grounded and positive.

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