Table 2

Expert Patients’ knowledge and wisdom for other patients

ThemeSample quote(s)
Accepting that you have diabetes is an important step towards living well.‘The first piece of advice I will give is to really accept that it is possible to have diabetes’. P6 (woman with T2D)
‘When you are told about the disease, it is a time that you must mourn your illness. Until this is done, you will not accept your illness and you will not be ready to make changes in your life’. P1 (man with T2D)
‘Get over any anger or denial and live life’. P11 (man with T1D)
People with diabetes do not have to be defined or limited by diabetes.‘I hate when people say, “you are a diabetic.” I say no: I am [first name], I am a mom, I am a grandmother, I am a daughter, I am not “a diabetic”’. P21 (woman with T2D)
‘I don’t have to limit my life in any way because I have diabetes’. P11 (man with T1D)
‘We have the choice if we will control the diabetes of if we will allow the diabetes to control our life’. P5 (man with pre-diabetes)
Diabetes is a constant, chronic condition with good days and bad days.‘The reality of diabetes is: it’s 24 hours a day, every day’. P12 (woman and carer of husband with T1D)
‘It is never going to be perfect. Diabetes is like a constant rollercoaster(…)Really, it’s a marathon not a sprint’. P20 (woman, mother of a teen with T1D)
Self-management requires learning.‘Get information, attend conferences, read about diabetes’. P2 (man with T2D)
‘Try to understand how diabetes works and what to actually do to be able to manage anything related to diabetes [to avoid] the complications that are known to diabetes’. P6 (woman with T2D)
‘Listen to your dietician, listen to your doctor’. P21 (woman with T2D)
Managing diabetes requires support, a good team, flexibility and taking responsibility.‘I think it is very important to be part of a very active team with your nurse, your doctor, your partner-spouse, all working towards an end goal(…)If you don’t think that you’ve got a good team as part of your treatment with diabetes, then continue looking until you are happy that you’ve got a team that you can work with’. P13 (man with T2D)
‘Patients should tell the doctor, this is how I see my life, and I want you to help me to live that life’. P4 (man with T2D)
‘There is not only one way to manage. There is more than one way to manage. And if you have to try all those ways, then you need to try all those ways’. P8 (woman, mother of a teen with T1D)
‘It’s my responsibility to be in charge of my life. My body, my mind and my spirit(…)understanding that the past has taken place(…)What I am responsible (for) now is my journey now and moving forward’. P5 (man with pre-diabetes)
  • T1D, type 1 diabetes; T2D, type 2 dabetes.