To shine a spotlight on American Diabetes Month and as a way to learn from people with type 2 diabetes (T2D), we hosted our first diabetes online community (DOC) group discussion last week, using a private Google Hangout.
Participants joined the discussion prepared to answer the question, “What is it like to live with a chronic disease – to be in it for the long haul?” The discussion began with agreement that after an initial diagnosis of T2D, resources are plentiful. However, it also appears that almost immediately after that, you are on your own.
Here are a few highlights from the participants:
- With T2D, it’s difficult to stay engaged with treatment because the disease is always there and will never leave. Changes are slow and happen over time, yet the world is filled with instant gratification. This is a frustrating way to live.
- No matter what effort people make, with T2D there is a feeling of failing. Patients need support and to understand what success looks like. But, how do they stay positive? How do they get that positive feeling to be contagious? Where’s the “’atta boy” or acknowledgement for trying every day?
- Many patients may not receive support for their disease because the US healthcare system can be so difficult to navigate.
- With this disease there’s always more to learn over time. It’s overwhelming and difficult to keep up. Where can someone find useful information? “It’d be great to have a chart, worded in layman’s terms that explained what each medicine did.”
- Diet and exercise are critical to the success of T2D management. But, exercise doesn’t get nearly the “coverage” as diet. But who supports our exercise efforts? Who holds patients accountable? For treatment to be consistent and effective, patients need support.
- With T2D, durability is so important in the medications. Being able to start and stay on a medication for many years is better than always having to switch because the one you’re on is no longer working.
- Patients need to be empowered as they manage this disease with their doctor. If we walk into a doctor’s office and hear, “Take this pill twice a day,” that isn’t very helpful. We need to know what questions to ask.
Having an opportunity to hear first hand from people with diabetes about the struggles they face made me feel grateful for the insights they offered so willingly. We plan to asses all of the insights we’ve gained for the discussion to determine how we can appropriately support “long-haul” patients going forward.