All July, the Joslin Blog is highlighting stories about taking care of yourself emotionally. This story was originally posted on July 24, 2013.
When the 2013 American Diabetes Association Medical Guidelines for Diabetes came out, they included a reference to patient support. This is a watershed in many ways because it recognizes in one fell swoop the impact of diabetes’ chronic nature on the ability of people to manage the disease. It acknowledges that all the clinical interventions and education in the world won’t be sufficient if patients do not receive continued support. It essentially says this disease is too hard to handle all on your own and we expect that you will need help (of differing amounts and kinds) as you life with diabetes goes on.
In fact, the National Standards for Diabetes Self-Management Education (DSME) states “While DSME is necessary and effective; it does not in itself guarantee a lifetime of effective diabetes self-care. Initial improvements in participants metabolic and other outcomes have been found to diminish after approximately 6 months. To sustain the level of self-management needed to effectively manage prediabetes and diabetes over the long term, most participants need ongoing DSMS” (Diabetes Self Management Support).
So let’s look at this concept of support. What exactly is it and how can you make sure you get it?
Support can come in many guises from many different sources. It can be clinical, educational or emotional. And the amount and types of support people need varies over time.
The support needed from health care professionals is ongoing. Of course, clinical support is expected, but people with diabetes also need to know that someone is available to answer questions and provide guidance without being pedantic. Support often means presenting patients with options, explaining the benefits and possible consequences of those options, providing an expert (medical/educational) opinion as to which options make the most sense from a clinical perspective, and then accepting that the patient must make his or her own informed decision.
Although the National Standards (for education) were written to encourage clinicians and educators to provide people with diabetes with support, it doesn’t mean that all support must stem from only these avenues. People usually need assistance from family and friends to make it easier to manage the disease.
This type of support can consist of doing such things as serving diabetes friendly meals that the whole family can enjoy, including exercise in family activities or stepping back to allow the person with diabetes to make his own decisions regarding his food choices or the number of times he checks his glucose reading, whether or not it complies with some universal standard. It can mean offering your assistance without trampling on peoples’ independence or privacy.
Employers are another group of people from whom people with diabetes may require support. A supportive workplace is one where individuals are free to check their blood glucose or eat a snack without fear of retribution.
People with diabetes also need educational support. In our fast-paced world information changes constantly. Knowing the most up-to-date material can make managing your diabetes easier. Many people use visits with their diabetes educators, nurses, dietitians and exercise physiologist as the foundation of this type of support. However, joining a cooking group, subscribing to an on-line chat group (that is moderated by a professional), consistently reading diabetes magazines or articles can also be a means of reinforcing your knowledge base. Joining a gym, a weight loss program or a diabetes support group can help you keep up the activities of diabetes self-management.
So part of your interactions with your doctor, educator and family members should be around the support you need to help you pilot the plane. After all, if pilots need co-pilots surely people with diabetes need the assistance of others to safely navigate their plane through a difficult flight pattern.