The Type 2 Diabetes Diagnosis: Emotions

By Kathy Kastner with Zal Press

First, you grieve

A diagnosis of Type2 Diabetes means the end of life as you’ve lived it. Adding to the shock is the perception: Type2 is the ‘bad’ diabetes. The one you’ve brought on yourself by your overindulgent lifestyle. Type1 is seen as the ‘good’ diabetes: beyond your control.

Rarely is this the case: Type2 Diabetes is most often ‘written in the genes’, thus confounding even the most diligent of health efforts.

Lori became an advocate as a result of seeing the impact of this condition on her father and nephew, which evolved into her becoming a resource and Opinion Leader.

With a Type2 diagnosis, going through the stages of grief is not uncommon: denial, anger, bargaining, depression and eventually – hopefully – choosing to accept.

Anger and denial

Even for those in ethnicities at high risk of T2, acceptance of a diagnosis can be devastating. Heather is a nurse and Opinion Leader who, on a whim – and well into her career – decided to test herself: Being as she was in the hospital on the Diabetes unit. That was in 1989.

Aida (who gives an infectious giggle as she explains,’ it’s pronounced like the Opera’) is slim and fit and is certainly no slouch. When others might think of retiring, she’s embarking on new careers as a radio and tv ‘star’.

A family history of diabetes meant Aida’s genes were indeed pre-programmed but that doesn’t mean she expected her diagnosis,7 years ago. Her reaction was to go into denial. As with many T2s, she felt no differently than before being diagnosed.

When Aida’s Diabetes required an insulin injection, she felt her reality shift. “I hate needles, even tho I have the tiniest one, I hate injecting myself. And I have to do this whenever my sugars aren’t controlled.”

Aida feels education – especially from Opinion Leaders such as these ‘round the table – is one of the keys to her decision to choose to successfully managing her T2.

Depression and bargaining

Heather and Lori agree: “It’s depressing, getting a diagnosis of Type2 Diabetes”

Trying to manage is often an emotional rollercoaster. In a video produced by Northwester University’s Communication in Medicine Shoold, specifically for medical school residents to better understand the lived experience, a young woman looks into the camera, her face full of confusion and upset. “This can’t be. How can my values be so skewed? I thot I did everything right.” She rhymes off her new rituals on her fingers: “I measured the protein, I exercised, I meditated, I injected.” and as she says this, the very finger she’s using to count off her list of ‘rights’ begins to leak blood. Her shoulders sag. She shakes her head, looking at her hands. “My fingers,” she says, almost to herself, ‘Now they leak all the time.”

Acceptance

Jim’s dedication as an Opinion Leader takes many different forms: care giver for his first wife with Lupus, President (Past) of the Optimist club, he works with disabled children as one of their many projects, Canadian Diabetes Association Volunteer of the Year and a Patient Educator for people with Arthritis.

As with many trying to manage Type2 Diabetes, lives are already complicated by other health conditions. To explain his head to toe issues, Jim stands up to demonstrate starting with his balding head, ending ‘an with enlarged aorta – I’ve got a big heart.”

Changing habits is hard enough for those who don’t have Type2 Diabetes – as evidenced by an industry devoted losing weight and healthy lifestyle strategies – which always include exercise. Another tough one even for the most determined.

This group of patient and caregivers are each Opinion Leaders who are committed to improving their own lives, and the lives of others with T2D. They combine support and advocacy with a healthy dose of humour: Heather is slim, keeps a healthy diet and gets in a certain amount of activity in her job as a nurse educator at a Diabetes Management Center, and has managed her Type2 Diabetes for 22 years.

Managing

By Kathy Kastner with Zal Press

Day to day: the social and the practical

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.

Education

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

Communication

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.”

Family, friends and the world

By Kathy Kastner with Zal Press

As anyone with health issues knows, there’s a ripple effect: it’s never ‘just about the patient’. Aida’s husband and children take an active role in helping their mother manage. This can be a bonus and a burden.

Jim is an Opinion Leader who is active in several advocacy groups. As with many patients, Jim feels he is not ‘a medical expert’. Fortunately his sister – a nurse – helps him keep tabs on his health: Jim feels lucky to have his sister ‘interpret’. His observation: everyone needs a support person. However, since many family members have been uncomfortable when he has self-injected in front of them, Jim minces no words when he says: “Family can also be a pain in the ass.”

Stigma, Shame and the Blame Game

The stigma of the perception that the PWD only has ‘himself to blame’ is something Opinion Leaders are often faced with – contributing to shame and self-blame. For many, anxiety is a constant companion, along with the juggling and balancing to maintain the ‘right’ sugars that make up the the day to day reality of a PWD.

Myths and realities

Aida family’s perception of being on insulin is based on myths and misperceptions from generations back. She welcomes becoming more involved as an Opinion Leader and took heart from Heather – an established Opinion Leader and nurse who diagnosed herself 22 years ago. Even with the daily rigors of managing, Heather doesn’t consider herself ‘sick’.

Healthcare Provider Relationships

Beyond each person’s family and social circles, there’s the healthcare world and its inconsistencies. Lori and Heather share what they’ve seen time and again in their role as Opinion Leaders: the ‘credibility’ factor: health care practitioners that PWDs can’t relate to – whether it’s a healthcare professional who is totally out of shape, or in ‘Iron Man’ top condition. This applies across the board: physicians, nurses, foot doctors and even dietitians.

There is much to be learned by PWDs and the world around them: Often there’s the perception that one-size-fits all. That just doesn’t apply to a PWD – where one PWD’s normal may be a ‘6’, for another it’s something else. Heather pointed out, it takes an effort and ‘a lot of talking ’ to establish what’s ‘right’ for each PWD.

In an effort to ensure that all staff get a sense of the day to day for a PWD, her Diabetes Center has every new staff member live for a week like a PWD. They are given props – empty needles and ‘smarties’ for pills. They have to record what they eat and drink and how they’ve exercised. This goes a long way to being more empathetic to the ‘lived experience’ of PWDs.

Government: out of touch with the reality of PWDs

Jim points to larger problems: A Government that’s out of touch with health costs for PWDs– a particular hardship for many who have no insurance coverage.

From Bringing patient centricity to diabetes medication access in Canada:

Those with Type 2 Diabetes spend on average between $723 and $1,914 annually. Seniors pay 36%-70% out of pocket for Type 2 Diabetes treatment.

Future implications for the health system: Canada doesn’t stack up well

Also from ”Bringing patient centricity to diabetes medication access in Canada”

Against international comparisons, Canada also performs poorly with respect to diabetes-related hospitalizations, mortality rates, and access to medications. Diabetes and its comorbidities pose a significant burden on people with diabetes (PWD) and their families, through out-of-pocket expenses for medications, devices, supplies, and the support needed to manage their illness. Rising direct and indirect costs of diabetes will become a drain on Canada’s economy and undermine the financial stability of our health care system.

A personalized approach to medication access, to meet individual needs and optimize outcomes, is also a key enabler. PWD and prescribers need reimbursement approaches that allow them to use existing tools (ie, medications and supplies) to manage diabetes in a timely manner and to avoid and/or delay major downstream complications.

Patient Centered Care

By Kathy Kastner with Zal Press

One of the tenets of Patient-centered care is care coordinated around the patient, rather than around the system. For a PWD, it takes a team.

Who’s on the team

Heather, who’s worked in the Diabetes Management Center since its inception in 1991, has become a leading Opinion Leader in team-work and patient-centered care – involving Dieticians, Exercise, Foot Care and special attention to the sores that may not be healing properly – a hazard for a PWD. The key to Heather’s success was buy-in from the Family Doctors. She points out that it’s unfair to expect Family Doctors to know all aspects of Diabetes Care. At the same time, it was essential to assure these good doctors that the intention was not to take patients away, but rather encourage them to embrace the interprofessional teamwork necessary for PWDs to manage. This took a concerted, proactive effort that proved effective.

Cross training maximizes patient centered care

Along with creating interprofessional support for PWDs, Heather’s team is cross-trained with each team member well-versed in every aspect of care: the dietician can examine feet, the nurse can counsel on diet.

Insulin isn’t the enemy – conquering ‘fear factors’

One of the things Heather tackles in the early visits is the fear of going on insulin. She shares her modus operandi: talk about it right up front, as the reality is, insulin is likely in many PWDs future.

With the fear of needles also looming large, it’s another hurdle Heather takes on at the get-go. ”They don’t leave my office until I’ve given them an injection. I demonstrate with a needle that has nothing in it. Most often they close their eyes and scrunch up their face in anticipation. They can’t believe when I tell them open your eyes; I’ve already done it. Takes the fear away.”

The evolution of an Engaged PWD

Aida, diagnosed 7 years ago, feels she now does a better job of managing. That’s an outcome of person-centered care: when patients and caregivers’ needs are met, this can lead to more self confidence in patients’ own ability, thus putting energies toward day to day management.

As an Opinion Leader, Aida also embraces technology in her care-related communications tactics – sending pictures to her healthcare professionals when she needs answers. She’s become a fully engaged PWD.

The Past and the Future of Patient Centered Care

Since her own diagnosis, in 1989, Heather has witnessed a huge change in care for PWDs: back then testers were the size of toasters, and patients going on insulin were hospitalized for a week, using an orange to learn how to inject.

Now, testers are portable, clinics replace hospital ‘stays’ and patients are encouraged to become more empowered and engaged. However, Jim points out one of the barriers that he feels healthcare professionals could be more sensitive to: PWDs often don’t even know what questions to ask nor do they understand the language and terminology. Aida shares how, in her evolution as an engaged PWD, she now takes notes and then does her own internet research.

The Future of Patient Centered Care

These patients, caregivers and Opinion Leaders hold out hope that the future will see what Heather has described as the Gold Standard for Diabetes Management: incorporating team-work, cross-training and seeking partnerships, such as working with the Emergency Department to get patients with Type 2 Diabetes out of ER and into the Diabetes Management Centre.

“You can educate people until the cows come home. What patients need help with is managing – that’s why we’ve moved away from being a Diabetes Education Center to being the Diabetes ‘Management’ Center.” – Heather