Sunday, March 2, 2014

Advocate for Yourself

Last month there was a lot of talk in the diabetes blogosphere  about what being an advocate means. There were A LOT of really fabulous entries.

I specifically love Christina's post here which speaks about the blurred lines of advocacy and being true to yourself. I really enjoyed Amy's post over at DiabetesMine .

They were all great to read. Our community is deep, complex and international. Reading how people felt all around the globe about their advocacy efforts individually, the advocacy efforts of the organizations such as the Diabetes Hands Foundation, and the advocacy efforts of the online community was truly humbling. Especially since I just made a HUGE career change this week in accepting a Fund Development and Outreach coordinating position at my local JDRF office.

If you would have asked me three years ago if this is the direction my life would be taking, I would have laughed at you. At that time I was fast tracking myself on a career path of design and web development with a sprinkle of inbound marketing. I didn't do a lot of advocacy work, and I certainly didn't do a lot in the world of diabetes. At that point I was pivoting between grasping advocacy and letting it go. That's when I discovered the diabetes online community.

So this is my post about advocacy currently: advocate for yourself.

I think you need to advocate for yourself in many ways in your daily life. You have to stand up for yourself and what you believe in with everything, from your opinions on the big to the little. Being an advocate for yourself can take many forms, and it isn't always writing a big rant online, sometimes advocacy requires action.

Here's a small story on self-advocacy:

In the past few years my faith in my medical team dwindled. Every meeting with my endocrinologist started with me explaining my history to a new intern. I actually went through a 10 minute meeting and at the end the intern explained what having type 2 diabetes does to a body to me. I felt like I was wasting my time in that office. I never got answers, I always had more questions leaving than I did when I went in. And it has been like that for years. The only major changes that were implemented were ideas brought in by me. It made me lose faith in that clinic.

The last straw for me was last year I went to the clinic for my visit to the endocrinologist, dietitian and CDE. My appointment was for 9am. My dietitian was sick that day, nobody told me. My CDE saw me at 9:45, and then I waited. And waited. And waited. The endocrinologist swooped in to the exam room/office at 2:25. That demonstrates her lack of empathy for what I went through that day. She didn't apologize, and to make it worse she barely spoke to me.

I fired her. I thanked her for her previous years work but I informed her that her delay that day was unacceptable. She was not on an emergency (I made sure to clarify that) She was late leaving her last clinic. The lack of respect she showed me was startling. She basically told me I needed to get my sugars under control, refilled my prescriptions and wished me well. She had no interest in working it out. So we were done.

We left and I was so frustrated it took me months to get on the phone and find someone new.

But I learned a lot that day. I learned that standing up for yourself, even to those who are in a presumed position of authority is important. When it comes to my health I will be making all of the decisions from here on out. I will not accept anything but dedication from my team. If it means I will spend years searching for the perfect team, then so be it. But if I want to live the life that I advocate for as a volunteer (and now as my career) then my first step is putting me before the doctors.

It was a struggle trying to get in  with a new endocrinologist, dietitian, CDE and GP. But now, two years later I am very happy with my choices. And this happiness and faith I have in my team shows in my A1C numbers, my food choices and my ability to talk to them in a candid manner.

2 comments:

  1. I think one of the most powerful ways we can inform and advocate to one another is to explain how all who guide us, medically, are not the same. For me, it took moving to a new state to learn the difference between a stellar endo and a "this-is-just-how-it-is-and-I-must-deal-with-it" one. Hopefully, your story can empower other people to realize that doctors also may vary, big time, and that if you don't get the fulfillment - or especially the respect - out of one, then you should look elsewhere. The best types of advocacy may just be the types that empower the individuals.

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  2. Like...Like...Like...

    It's very cool reading about how your life is turning out the last couple of years. Kudos to you.

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