Around the dinner table, the mood was relaxed and jovial – exemplifying the comfort and relief of a ‘safe’ environment. Even for these patient and caregiver Opinion Leaders, there’s often anxiety about awkward reactions during meals when explaining “I have Type 2 diabetes”: defending choices they have to make is but one of the social implications of a PWD.
Scheduling testing and taking necessary medication is such that often a PWD doesn’t even want their family to know. As Aida explains, “I have to hide it from my children.”
Stigma and being judged
Stigma, being judged, misconceptions and interference – even if well meaning – are often everyday hazards for a PWD. Stigma because the assumption is if you weren’t born with it, you’ve brought it on yourself. Being judged by what you eat: ‘you only have yourself to blame – it was your undisciplined eating habits that ‘got you here.’
Heather shares the conflict brought on by medication that made it impossible to maintain a healthy weight. As a diabetes nurse, she knew how to eat properly, but the meds caused such lows that she was unable to maintain a healthy weight.
Food: never-ending vigilance
Aida, diagnosed 7 years ago, comes from a family and a culture that loves to eat (is there a family and culture that doesn’t love to eat) “every social event is all about food.” Her educational journey to patient empowerment has her at every event related to Diabetes. Her mission as an Opinion Leader: to become more empowered and to have choice. Collaboration with Opinion Leaders ‘round the table gives her confidence.
The rising number of PWDs hasn’t led to the educational support needed. Lori is a caregiver advocate for her father and brother. In her experience as Opinion Leader, she knows: education and choice are what’s needed.
The cost of managing: hundreds of dollars
Cost is another factor that smacks even the most stalwart Opinion Leaders. For Aida, it’s a monthly $200 plus. Heather comments: ”insulin is covered but not the needles. What do they think …you’re going to drink it?” In addition to the insulin, there are tablets, glucometer testers and strips. Expense works against control.
In their research, Bringing patient centricity to diabetes medication access Canada the authors point to the Charter of Rights:
“Medication access is a key right and responsibility noted in several sections of the Charter, given the central role played by medications in diabetes management…. 15% of PWD [people with Diabetes] indicated a lack of government and/ or private prescription drug coverage, while another 30% of PWD reported a lack of insurance to cover blood glucose monitoring supplies or equipment.”
Judith L Glennie, Katharina Kovacs Burns, Paul Oh, ClinicoEconomics and Outcomes Research 2016:8 599–611
At work, PWDs often feel they must not let their co-workers know that they are on insulin. As Aida pointed out: “There’s still a stigma and a misconception about insulin that if you’re on insulin, death is coming.” Aida’s job involves many social functions, but worry about this perception has resulted in missed injections – risking further health complications.
Jim is an Opinion Leader who describes himself as a ‘layperson without technical or medical knowledge’. He shares what many patients ‘take away’ from a hurried appointment with any healthcare professional: just the bad news. This is a communication issue that’s been proven in more than one study. Jim, who feels healthcare professionals should make more of an effort to ensure patients understand, takes heart, hearing Heather’s modus operandi “I’m impressed at how you treat patients.”