An article appeared in my Facebook feed yesterday, several times. The article caused some uproar among the DOC due to the fact that it showed type 2 diabetes patients in a negative light. We don’t like that. My initial reaction was one of disbelief and anger and I commented that I felt a blog post coming on. I was right; here it is. However, as I let myself calm down and think about this situation, my attitude shifted a little bit and I re-read the article with different glasses.
The article (which I won’t link to here because, well just because I don’t want to) was written for healthcare professionals as a guide to help them help their diabetes patients “adhere to treatment protocols”.
The article, upon my second reading, actually contained some good stuff. There were quotes from doctors with good advice to help patients with the difficult task of accepting and learning to live with type 2 diabetes. There were suggestions that showed that these doctors understand how difficult it can be to make the necessary changes we face. They encourage better communication between the doctors and patients; essentially helping people along instead of shoving them out the door to figure it out for themselves. The use of technology was mentioned and even gasp the idea of reaching out to other diabetes patients through support groups!
It’s been nearly 11 years since I was diagnosed and these ideas were non-existent when I found myself floating in a sea of WTF as I left that first appointment. I find it encouraging that there may be a swing toward more understanding of the shit-storm that living with diabetes is.
Now let’s talk about what’s horribly wrong with this article.
The article lists 5 ways that patients don’t adhere to suggested protocols in their lives with diabetes, despite the fact that these protocols have been proven to show the best results down the road. Each and every one of the 5 areas was addressed as a failure on the part of the patient. The patient fails to make necessary lifestyle changes. The patient fails to adequately monitor their blood glucose. The patient fails to show up for appoints, etc. GAH! Just typing these things has raised my blood pressure yet again and made me feel like reaching through the computer screen and throttling the author of this article. The nerve! The unmitigated gall! The cheek!
Under each of these 5 horrible headings were some really good ideas about how HCPs can assist their patients, but who can get past the freaking headings! When depression, exhaustion or burnout cause me to slip up and eat things that I know aren’t the best choices, I’ve FAILED? Really? When someone can’t afford to buy extra test strips because their insurance only allows them 1 per day, they’ve FAILED to correctly monitor their blood glucose? The lack of adequate patient education on the importance of their medication regimen is a FAILURE on the patient’s part? THIS is what got our collective panties in a twist. Blaming the patient for the myriad ways the system fails us.
Words matter. Regardless of the fact that this article contains some good advice for doctors, it falsely blames the patient. Even an amazing HCP who treats their patients with kindness and compassion is seeing the word failure in conjunction with patients. If you see a correlation often enough you can begin to buy into it; you can begin to believe that patients are failing without considering that the system might be failing us. It’s bad enough that doctors might look upon us as failures, but it’s even worse when we begin to believe it too; and we do too often.
Living with diabetes is hard; it’s unbefrickenlievably hard. We need to be uplifted and admired for the changes we do make. We need recognition for the mental anguish we experience and help to overcome it. We need better education. We need help, not labels.
People with diabetes work hard, every day, to do the best they can with a sucky disease. As a community we will never “adhere” to protocols 100% of the time but those words like failure will stick, like glue.