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 [...] continue the story
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 [...] continue the story
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 [...] continue the story
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 [...] continue the story