Guest Blog: Patient Perspectives.
Bethany Rose is a new diabetes blogger on the block (you can check out her blog at Me with the D) and today she's offered to guest blog here on SUM while BSparl and I are hanging out (and most likely cleaning up spit up). Thanks for blogging, Bethany, and I hope you guys enjoy her words!
Let’s be honest. Dealing with doctors isn’t always as pleasant as we’d like. It’s difficult when we really do need them for help with something so pervasive in our lives.
Nobody knows our diabetes better than we do – we live with it every single day! Still, we so often emerge from appointments with doctors feeling scolded, undermined, and/or unheard. Why?
To be fair, there are some really good doctors out there (I should know – I see some of them!) and there are some pretty scary complications associated with poor control over this disease. Perhaps our doctors are just doing what they think is best to help us avoid these complications.
Maybe our doctors just need a little help understanding the full picture of what we need from them.
A few months ago I had a unique opportunity to speak with a group of medical students about what it’s like to have diabetes and to deal with doctors in that context. As part of this discussion I was able to communicate to these doctors-to-be some of the points that I feel medical professionals really need to understand when dealing with people with diabetes. Following are some of the issues I raised:
1. Every person with diabetes is unique. A textbook might be a good starting point, but realistically, nobody has “textbook diabetes”. We want to be viewed as individual patients with individual problems requiring individual diabetes management techniques. Clearly there will be similarities between us, and certain generalizations can be made, but just because one strategy works for one person doesn’t necessarily mean it will work well for everyone with diabetes.
2. Some of us have spent a lot of time educating ourselves about diabetes. We don’t want to be lumped into the same category as patients who aren’t interested in understanding this disease or how to manage it. We know what we’re talking about and we appreciate it when that fact is acknowledged.
3. Diabetes sometimes requires thinking outside of the box. Since we deal with our disease on a day-to-day, hour-to-hour, minute-to-minute basis, we might have ideas that our doctors may not have considered or seen before, or that don’t initially seem to make sense. But even when our suggestions seem unusual, we want to be heard and we want our ideas to be given a chance. They might actually work!
4. Sometimes poor control isn’t an indication of a lack of effort on our part. Sometimes it just means we haven’t found what works for us yet. Sometimes we need help finding a solution.
5. People with diabetes deal with a lot of guilt. (I know Kerri’s touched on this one in the past.) We don’t appreciate feeling blamed for our diabetes, for our diabetes management problems that we work so hard to fix, or for our diabetes complications that we’ve worked so hard to avoid. Encouragement and motivation are helpful – blame isn’t.
I don’t know how much of what I said stuck with the students that day, and I don’t know how much will continue to stick with them as they go on to get their degrees - perhaps even specializing in endocrinology. I’m sure I only touched on the tip of the iceberg in terms of improving the doctor/patient partnership, but hopefully I was able to plant some seeds that will benefit their patients who are living with diabetes in the future!