Type 1 diabetes (T1D) is a complex illness that can intrude on all aspects of daily life and impact patients physically (e.g., when experiencing hypoglycemia or hyperglycemia), psychologically (e.g., stress, anxiety) and socially. The many impacts of T1D reach beyond patients and can also affect friends and loved ones.
In fact, managing T1D often requires a team effort involving not only the patient, but also their friends, loved ones (partners, family members) and healthcare team. Managing T1D is more difficult for someone who doesn’t have adapted support from friends and loved ones who can help them bear the emotional and mental burden.
It has long been known that social support is a key element for helping people with T1D manage their illness. However, there is little talk about how T1D can affect couples’ relationships.
A recent study looked at the challenges and needs associated with T1D among couples. Individual interviews were conducted with 16 T1D patients and 6 partners. Healthcare professionals were then asked to identify priorities and propose solutions to improve their practice. Here’s what the researchers found.
Looking to be helpful
The study highlighted the fact that many partners don’t know how to better support their loved one with T1D and feel frustrated about this. They also expressed that they wish they would be recognized as allies and included in the care plan. Partners believe that diabetes should be a shared burden as opposed to an individual struggle.
Partners also said that they need more information on diabetes management and help to better support their partner with T1D.
Being mindful of the emotional burden and moralizing speeches
As for people with T1D, seeing the emotional toll that diabetes takes on their partner (e.g., concerns, anxiety) and feeling like they are inadequate and dependent can place an additional burden on their shoulders. This seems to be the case particularly in couples who have a lack of communication.
People with T1D also expressed that even when their partners do their best to support them, their inability to know what it’s like to live with this condition and understand all its aspects sometimes translates into “criticizing” and “moralizing” speeches.
Improving communication and giving space to partners
The study exposed different aspects that can create tension in couples and affect T1D management.
Certain strategies can help couples to improve their communication, address problems sensibly and actively involve partners:
- Make a plan: The T1D patient decides whether they want their partner to be involved in the management of their diabetes, and how much support they’ll eventually want. To co-manage diabetes successfully, it’s important to acknowledge and respect each other’s boundaries and to discuss what kind of support is appropriate.
- Make an ally: The partner can become an ally or a resource to better cope with the daily fatigue associated with T1D and its requirements. However, it’s important that they be able to talk about the challenges they might face in this role.
- Make the couple a part of the care plan: Healthcare professionals could benefit from including their patients’ partners—so long as their patients agree—in the healthcare plan and supporting both partners. However, there is still work to be done to adapt diabetes-related information and to identify strategies that will help couples to co-manage T1D and share the burden.
- Make space to talk: Couples who participated in the study also said they needed access to spaces where they could get support (e.g., healthcare team, talking group, website), discuss the challenges they face and find solutions to help couples who are struggling to cope with diabetes and its toll on their relationship.
- Make it your own: It’s important to remember that each couple is different and that strategies should be tailored to their respective needs. These strategies will vary according to the T1D patient, their partner, and the boundaries they each establish between diabetes and their relationship.
Communication, support and cohesion are essential for couples to adapt to life with T1D in a healthy way. There are strategies that can help to develop and consolidate these elements to support couples and make living with T1D easier.
- Kelly CS, Berg CA. Close relationships and diabetes management across the lifespan: The good, the bad, and autonomy. J Health Psychol. 2021 Feb;26(2):226-237. doi: 10.1177/1359105318805815. Epub 2018 Oct 15. PMID: 30318922.
- Messina, R., Berry, E., Golinelli, D. et al. Tackling diabetes as a team: co-designing healthcare interventions to engage couples living with type 1 diabetes. Acta Diabetol 59, 1053–1061 (2022). https://doi.org/10.1007/s00592-022-01900-4
Written by: Meryem Talbo, Dt.P. M.Sc.
- Sarah Haag RN. BSc.
- Amélie Roy-Fleming Dt.P., EAD, M.Sc.
- Rémi Rabasa-Lhoret, MD, PhD
- Anne-Sophie Brazeau RD, PhD
- Aude Bandini, Sonia Fontaine, Jacques Pelletier, Marie-Christine Payette, Michel Dostie, Eve Poirier, Claude Laforest, patient-partners of the BETTER project
Linguistic revision by: Marie-Christine Payette