Sometimes words can hurt more than a needle prick. Since, on the outside, a person with diabetes (PWD) may look perfectly healthy, it’s easy to accidentally say something thoughtless and insensitive. Through normal activities with this person who you live with, work with, or otherwise encounter on a routine basis, odds are good that you never or rarely see their quiet sacrifices, attention to their own special needs, or sly accommodations to live a productive and healthy life with diabetes.
Unless they want you to.
Being on the outside looking in, those who make up a PWD’s support system – health care providers, coworkers, friends, family members, even partners – can find it difficult to talk about diabetes in a helpful way. After all, we don’t experience the ongoing daily management a person living with diabetes does.
You want to let someone living with diabetes know that you are there for them without feeling as if you’re being too intrusive. Diabetes is a personal battle, and has very individualized characteristics for each person living with the disease. How do you offer help without overstepping bounds?
To answer this question, we’ve compiled some tips on how to talk about diabetes with patients, friends, family, and coworkers. We also developed a resource on how to assist them in an emergency.
For Health Care Providers
When working with patients, it is important to first think about how you speak about diabetes. Although typical in an electronic medical record system, it’s important to resist the temptation to use the terms compliant and noncompliant when communicating with a person with diabetes. This includes both direct and indirect communications. These labels do not show appreciation of the complexity of living with diabetes or take your patient’s efforts to manage their diabetes into account, and often creates feelings of disappointment and hopelessness. Before assigning such a binary label to a person’s life with diabetes, consider the following:
Blood sugars cannot be controlled. Blood sugars are simply data, and are affected by too many variables to be viewed as something that can be raised or lowered by desire alone to be in a good range. The best anyone, even the super humans living with diabetes, can do is manage their blood sugars, and react to the data promptly. They do that by checking their glucose levels. Testing implies a grade - a pass or fail. It is not a failure when blood sugars are out of range; it is an opportunity to see patterns and make adjustments (not corrections).
Once you have the right language tools, make sure you understand your patient’s individual needs. Adopt a question-based approach and active listening. Posing the simple question “What does your diabetes mean to you?’’ could enable a person with diabetes to explain their personal challenges. Other open-ended questions:
- What is going well with your diabetes management?
- What do you find tough about living with diabetes?
- What is the most important issue you want to discuss on this visit?
- Do you have any goals in managing your diabetes? If so, is there anything that is making it hard to reach those goals?
Patients will be more successful if they take ownership of their goals. Work together to come up with one or two ideas for improvement that your patient can work on between visits.
Something simple you can do right from the start to help your patient with diabetes: Have them invite a family member or close friend to accompany them to their medical appointments. Having a third party in the visit will help ensure that a patient retains more of the conversation, and also help to increase accountability in efforts to live well with diabetes.
For Friends & Coworkers
Diabetes is a big deal. In a social or work environment, diabetes can be even more cumbersome, leaving a PWD feeling vulnerable, judged, or unfairly labeled or stigmatized. Unless you or your loved one has it, you probably have little idea what living with diabetes is like. It involves thinking about what, when, and how much to eat, while also factoring in exercise, medication, stress, blood sugar monitoring, etc. – it is a full-time job in itself. Each person with diabetes has unique needs and factors to consider when managing their disease, and must constantly process new information, learn from mistakes, and make adjustments to find success.
Many of the popularly held beliefs about diabetes are out of date or just plain wrong. It’s helpful if you take an interest in what your fellow PWD has to consider, and ask questions if they are comfortable with sharing. Resist the urge to share horror stories about things you’ve seen in movies or you’ve heard from friends or relatives – diabetes is different for every individual, and most people living with the disease don’t suffer from the horrific complications that are used to induce fear.
When your friend or coworker checks their blood sugars or gives an injection, there is no need to be uncomfortable. Checking sugars and taking medications are routine activities that keep them healthy. If they have to hide while doing so, it makes it that much harder.
Not every PWD is comfortable with being open about their diabetes, so try to avoid giving in to the urge to peek at or comment on blood sugars without asking. These numbers are private, and are best compared to someone looking at your weight while you stand on the scale. For a PWD, it’s normal to have numbers that are sometimes too low or too high. Unsolicited comments about these numbers can add to the frustration and anxiety your friend with diabetes may already feel.
Don’t be the “diabetes police.” Be supportive of your coworker’s choices. Never push food on them or comment about what they eat. Instead, offer to go for a walk or share a healthy meal. Not being alone is incredibly helpful and serves as motivation to make healthy choices, and these choices are good for you, too.
If you want to be supportive there are lots of little things you can do, but what your coworker really needs may be very different than what you think. If you are unsure about how to help your colleague living with diabetes, ask them. Just offering to help shows you care.
For Loved Ones
Life with a loved one with diabetes is like learning a new language. Get familiar with the acronyms (A1C, DKA) and terms (bolus, basal rate) that people with diabetes use when talking about their condition. This is your loved one’s disease, and they will always be the expert, but with a deeper understanding you can figure out where your help will be needed and appreciated.
For example, know the signs of severe hypoglycemia (see handout) or hyperglycemia in case your loved one is prone to debilitating lows or dangerous highs. Work out a plan together for treating these situations, including how to treat a low, when to call 911, and how to administer Glucagon. Review the plan every few months.
You can learn all about diabetes, but that is only part of the story. Talk about the expectations of both partners, and clear up any assumptions you both might have. You may think what you are doing is being supportive, but even with the best intentions, you may be creating more stress and anxiety. Refrain from telling your loved one what to do. Instead, ask what you can do to be supportive.
Being there to listen, especially on the rough days, can be the most important way to help. Let your loved one vent about how stressful, frightening, and lonely it is to be responsible for keeping themselves alive. While diabetes doesn’t have to be the center of your relationship, don’t leave them completely alone with it either.
It may be easy for you (and others) to notice when your family member is eating or doing something unhealthy, but it is just as easy to miss all of the things they are doing right every day. Knowing that you care and are aware of all of their efforts can be the best source of encouragement, and will reassure them that they can rely on you when they need you most. Let them know how inspiring they are to you, and how their living well with diabetes helps you to live better and achieve your goals too. Identify and set common goals so that you both have a stake in each other’s well-being. Focus on the positives, listen to the negatives, and share your admiration, love, and desire to spend a long and happy life together.
DAWN (Diabetes Attitudes Wishes and Needs) 2™ study: From Insights to Action
The DAWN™ Care Needs Model highlights insights, tips for action and steps that friends, family, healthcare providers and society can take to help improve the lives of people with diabetes.
The Dos and Don’ts of Supporting Someone with Diabetes
A helpful Do’s and Don’ts list that can be forwarded to a friend, an acquaintance or loved one who doesn’t have diabetes.
Joslin Diabetes Centeer
Behavioral Diabetes Institute
Bringing Science Home: Diabetes Partners
A series of videos intended for partners of people with diabetes.
People living with diabetes can share their feelings in various mixed media formats to inspire and educate others in the process.
A way for a spouse or partner of someone with type 1 diabetes to assess their own level of diabetes-related distress, determine what might be the biggest contributors, and receive personalized tips.
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