On top of coping with the significant burden of their treatment, people with type 1 diabetes (T1D) also have to deal with a slew of unsolicited comments and suggestions in relation to their health from their friends and family, healthcare professionals and even other people with T1D. Even though the intentions may be good, these types of comments may be irritating for the person at the receiving end. Inaccurate representations of T1D are also found in the media (e.g., press, TV series) and fuel the stigma. In a previous article citing BETTER registry data, we mentioned how people with T1D are often confronted with misconceptions that imply it’s their fault if they have this condition.
Unfortunately, living with T1D also comes with an increased risk of complications (affecting the eyes, nerves, kidneys or the heart). Studies have shown that adequate blood sugar control can help prevent the onset or deterioration of complications.
Diabetes-related complications—and how to prevent them—are often another source of finger-pointing. The message implies that complications arise because the person didn’t do what’s necessary to prevent them, didn’t listen to their healthcare team, didn’t follow the recommendations, didn’t live a healthy lifestyle, or was lazy or neglectful, etc. How can one possibly not feel shameful, frustrated and guilty when they hear this?
Renza Scibilia and Chris Aldred, who both live with T1D, decided to start a conversation about complications. In 2018, they started sharing their experience on social media under the hashtag #TalkAboutComplications. The movement quickly took off, with many people with T1D wishing to talk about their complications without being judged.
Based on these conversations, feelings of shame and guilt seem to prevail in people with T1D when healthcare professionals—or family, friends, the media, other people with T1D—comment on them developing complications. The thing is, diabetes-related complications are not caused by laziness or negligence; they’re caused by… well… diabetes.
Here are three misconceptions about diabetes-related complications.
Misconception #1: Complications arise because patients don’t take care of themselves.
If you believe that patients are necessarily at fault for their complications, you’re completely overlooking the fact that managing T1D is relentless. It’s simply impossible to achieve “perfect” blood sugar levels at all times, even if you work hard, even if you keep healthy, and even with current treatments.
There are over 42 factors that impact blood sugar, many of which are impossible to control (e.g., hormones, temperature). Researchers are still wondering why blood sugar levels will vary on two identical days (same meals, same energy expenditure, etc.).
Not to mention environmental factors, such as the ability to overcome challenges, knowledge and resources, that impact what a person does to keep healthy. For instance, it might be difficult for a person experiencing homelessness or depression to prioritize diabetes management.
Thanks to the many people who signed up for the BETTER registry, we were able to determine that a person’s socio-economic status and risk of complications are correlated. People with a lower income who don’t have access to private insurance develop more complications. The study didn’t look at the causes of these inequalities, but it can be presumed that people with a lower socio-economic status don’t have easy access to the most effective treatments, or experience challenges in their everyday lives that keep them from getting the full benefits of their treatment, whether it’s for economic or cultural reasons.
Misconception #2: All health problems are caused by diabetes.
No, you can’t blame it all on diabetes! Even though many organs are indeed affected by T1D, it’s not necessarily the cause of all ailments.
For instance, people who don’t live with diabetes can still have cardiovascular problems (e.g., stroke) or retinopathy (an eye condition), even though their blood sugar levels are within normal range.
So, regardless of blood sugar levels, new health problems aren’t necessarily due to T1D. On the one hand, major studies have shown that the closer blood sugar levels are to the target range, the lower the risks of diabetes-related complications. And there are now treatments and technologies that bring us closer to this goal than ever before.
On the other hand, there is no such thing as an “illness-free life” guarantee, no matter if you live with T1D or not, or if your blood sugar is “perfect.” Too often, healthcare professionals tend to correlate any and all health problems to T1D without bothering to look into other potential causes.
Misconception #3: Fear of complications is an effective motivation tool.
Other people’s comments and opinions may motivate some T1D patients to do even better and prove others wrong, but it’s not necessarily the case for everyone, and it’s not foolproof. Everybody essentially wants to be healthy and avoid diabetes-related complications. However, for some people, the fear of complications rather acts as a disincentive and fosters a sense of powerlessness. Similarly, the fear of judgment and humiliation might keep some patients from reaching out to their healthcare team or attending their medical appointments. As a result, potential complications might remain undiagnosed, or not get proper treatment and become more severe.
Healthcare professionals tend to mention the risk of long-term complications as soon as the T1D diagnosis is made, giving people with T1D and their loved ones a sense of impending doom. This adds to the daily burden of managing T1D.
Blood sugar control isn’t the only factor to consider in preventing and managing potential complications; measures such as screening, additional treatments and lifestyle changes should also be implemented.
The guilt-inducing discourse and comments people make only add to the anxiety, stress and fear of developing and living with long-term complications. That’s why it’s important to change counterproductive prevention spiels. People with T1D will understandably feel guilty when they develop complications if they were always told that complications are avoidable. We must change the way we talk about complications so that people who need help feel encouraged to reach out.
References:
- Diatribe Learn, «Talking About Complications», consulté le 23 juin 2022, https://diatribe.org/talking-about-complications
- Scibilia R, Aldred C. #TalkAboutComplications BMJ 2019; 364 :k5258 doi:10.1136/bmj.k5258
- “Diabetes Control and Complications Trial (DCCT): results of feasibility study. The DCCT Research Group.” Diabetes care vol. 10,1 (1987): 1-19. doi:10.2337/diacare.10.1.1
Originally written in French
WRITTEN BY: Sarah Haag RN. BSc.
REVIEWED BY:
- Amélie Roy-Fleming Dt.P., EAD, M.Sc.
- Rémi Rabasa-Lhoret, MD, Ph. D.
- Anne-Sophie Brazeau RD, Ph. D.
- Aude Bandini, patient-partner, living with T1D since 1991
- Jacques Pelletier, patient-partner, living with T1D since 1978
- Sonia Fontaine, patient-partner, living with T1D since 2000
- Marie-Christine Payette, patient-partner, living with T1D since 1988
- Michel Dostie, patient-partner, living with T1D since 1991
- Eve Poirier, patient-partner, living with T1D (LADA) since 2018
- Claude Laforest, patient-partner, living with T1D since 1984
- Laurence Secours, patient-partner, living with T1D since 1994
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