Is Your Diabetes Support Group Hurting You?
It is often said that the clinician is the professional, but that the patient is the ‘expert.’ A patient might not have all the medical knowledge or know-how of the profession, but many a patient has had to refine the knowledge of their personal or chronic medical conditions (or those of a loved one) in order to survive, manage, or to overcome health challenges. Sometimes, quite extensively! A clinician, after all, might only have time to see a patient around 15 minutes per appointment (on average), and perhaps every few times a year. With this obvious vacuum in care, the patient has resorted to fumbling on their own, and quite frequently in the dark.
But with the rise of social media, we can now find a variety of places on the internet to meet other persons with our same health challenges, and get the emotional and healthy living support that we need. This is a wonderful thing! It allows us to have instant access to a wealth of knowledge that only experience can bring that would have been impossible for us to have with just a doctor’s visit, or a weekly or monthly support group in our communities. This is knowledge that comes from the nitty-gritty of living with a chronic health condition.
An online health support group might help us find answers to such questions as: “When do you eat,” “How do you handle social events?,” “How do you handle the holidays?,” “Where can I find affordable medical supplies?,” “How do you handle high blood sugar in the morning?,” “What do you like to do for exercise?,” “How has taking insulin affected your life?,” “Where do you hide your insulin pump,?” etc. Social media groups provide in infinite supply of knowledge from personal experience.
These groups however, are not without their downsides, and there are considerations we must all have when we are in them in order to have the healthiest experience:
- They are not a substitution for medical advice: Personal experience is simply personal; it is NOT science. Someone’s experience might only be true to them, in their own perceptions – and it might be, in fact, completely erroneous. Always check with your medical team before making any serious changes to your regimen. If you are hesitant or distrustful of something – follow your instinct and ask. There is a LOT of misinformation and pseudoscience out there that can at best, cause us to waste our hard earned time and money, and at worst be harmful, or deadly.
- They are not a substitution for therapy: They are great for discussing daily frustrations of managing a condition, or for venting when the world doesn’t ‘get us.’ But online diabetes support groups are not a proper place for us to get counseling for major life events, such as a divorce, a family death, or to properly process our anger, or resentment against others for having diabetes of a particular type.
- They are not a substitution for a social life: It’s difficult relating to others without diabetes in our daily lives; however we should strive to create awareness, and to educate and work with our friends and family in order to have the best long-term and immediate support for managing this condition, and the ups and downs of life. They are after all, our first line of emergency and defense. It does take a village to manage diabetes.
- They are not a substitution for change: Simply talking about how change is difficult is sometimes necessary; but we must rethink our involvement when that conversation stays as commiseration and does not translate to actual change. Are we in need of advice, are we in need of emotional support, or are we whining? Remember… misery loves company.
- They are not a place to compare ourselves to other people: And this is the big one. It is incredibly tempting to want to know every detail of someone else’s management, and their success or lack thereof – including their daily blood sugar numbers. Some say it helps them feel accountable or helps them know they are doing something ‘right.’ But more commonly, it makes people feel like guilty failures who aren’t doing enough as a way to compel proper management, without properly addressing the root problems. We are then judging ourselves as ‘good’ or ‘bad’ people, when we could be struggling with emotional eating and in need of seeing a behavioral therapist, for example. We might also be unfairly judging ourselves as ‘failures’ for our lack of success based on someone else’s ‘good numbers,’ but what is ‘right’ for them might not be right for everyone; there are many reasons why we might have a certain blood sugar number which might not be dependent on anything we did. Simply put, a person with diabetes is NOT their numbers: a number is just a reflection of what our blood sugar is doing at moment x or y, which might require us to make a change of some kind or another. It doesn’t say that we are people who need to be policed or held accountable: but it might say that we are people who need to have a change of medication, or who have other health challenges, or who need to see a therapist, etc.
Diabetes support groups are excellent, when we use them appropriately. A diabetes support group can be an enormous tool of support and change for many. It can help us have access to a wealth of information, personal experience, and emotional support – especially when we feel alone, or don’t feel equipped or understood in our daily walk with this condition. However, these outlets do have their limitations, and we need to use our judgment while we are in them, as with anything else we might read or experience on the internet.