Wednesday, March 30, 2016

Sticking Like Glue

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.

Saturday, March 19, 2016

Reconnecting with my tribe

Although it’s been a while since I’ve written in this space, I’ve been here thinking about things to write and diabetes campaigns to promote. I candidly wrote previously about my struggles over the winter and they continued into January and part of February. I’m ok but it’s not been easy to climb out of the funk.

Last weekend I was lucky enough to attend the 2nd annual Diabetes UnConference. Not only did I attend for the second time, but I was honored to be one of the facilitators! It was an amazing experience. Last year I wrote about experiencing the first UnConference and, honestly, I could cut and paste that post here and it would remain just as relevant. If you want to know what the UnConference is like, please go and read that post. Go ahead, seriously.

You may think that having the same experience would make the UnConference a one-shot deal. If you’ve been once, you don’t need to go again sort of thing. Nuh uh. Not even close. You see, what makes the UnConference so special is that it’s people with diabetes coming together to talk about things that affect our lives; things that are meaningful to us. It isn’t “how do I insert this CGM sensor” or “what is the best diet to follow” (although those discussions do happen), it’s discussions about the emotions that we feel when living with diabetes. It’s talking about difficult subjects in a place where you feel safe to do that. It really is a large support group meeting that takes place over 1 ½ days. Powerful stuff.

This year there were familiar faces but the majority of the attendees were new to the event. How cool is that? There was over 2,500 years of diabetes experience in that room. Let that sink in for a minute. Two thousand five hundred years! And yet, we didn’t have all the answers because diabetes changes; diabetes doesn’t play fair. I think one of the things that stands out for me is that, regardless of how many years you’ve been living with diabetes, you still need your peeps. You still need the connection to others who “get it”. You still need someone to understand. The Diabetes UnConference is simply a room full of people who get it and are ready, willing and able to support each other.

So back to me (it is my blog, after all). I was apprehensive about going to the conference this year because I would be facilitating and I was worried that my fibromyalgia would cause me issues. It didn’t, at least not until it was all over. That’s when I hit what I call my “fibro wall” and I spent the last night in my room resembling a rung out dishrag, but a dishrag that felt content and happy. I reconnected with my tribe. I came home filled with renewed determination to start living my life again. What I’m feeling now isn’t just a desire to get back in the saddle with my diabetes but I feel more able to begin living my life now that my responsibilities for my mom’s care have diminished. I want to go camping! I’m looking forward to our “big trip” this summer! Walking. Writing. Hiking. Crafting. LIVING! I may have eventually gotten to this point on my own, but my current feeling of STOKED! comes directly from my experiences at the Diabetes UnConference and all the people who attended alongside me. A weekend spent with my tribe; the people who get what this part of my life is like. It. Was. Amazing.

What happens at the UnConference, stays at the UnConference (and not just because it was Vegas). We pledge to not discuss other people’s stories outside of the event and that allows the attendees to feel safe talking about their fears and issues. If you want to experience this weekend of awesomeness, there is a way. There will be a 2nd UnConference this year in Atlantic City. Check it out here. If you live in the east or are free to travel about, I highly recommend that you register and attend. You won’t regret it (and I’ll be there too!). And, there is always next year! The UnConference will be back in Vegas next spring and I’m sure there will be another one later in the year in the east. So many opportunities are out there for you to experience this phenomenon. Do something good for yourself. You deserve it.