ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.
Advocacy is the big buzzword in the medical world today. You are urged to advocate with Congress about insurance coverage, diabetes research funding and workplace issues. You are told to advocate for yourself with your doctors, your diabetes educator and your teachers and coworkers.
Sounds like just one more task to add to the pile of things you must do to live with diabetes. No, thank you, I already have enough to do, between testing and bolusing and counting carbs and exercising and changing Pods and changing sensors. Phewwwww … enough already! Right?!
Well, no, not really. It’s really not all that hard … and it’s really important. After all, who’s more important to your own life than you? It is survival.
Let’s break it down into what you can do and what will make your life better.
MOST IMPORTANT: Advocate for yourself! How, you may ask?
When you go to see any of your healthcare professionals, be prepared:
- Before your appointment
- Write down any questions or health problems you need to discuss
- List what you expect to come away with, after the appointment
- Bring a list of your medications and a pad of paper/pen (or notepad on your smartphone)
- Check if you need updated prescriptions for medications or Pods
- Make sure you know how to reach your provider if you have further questions
That’s it … simple! You are prepared and organized, which helps you get your needs met and helps your healthcare professional understand your needs as well.
You can also advocate for yourself within your family and friends.
- First, think about your life with diabetes and what you might want from your family members, friends, co-workers, by way of emotional support and actual actions and under what circumstances.
- Do you want them to listen to you when you are frustrated or scared?
- Do you want them to just say, “Awwww, yeah, that’s tough. I feel you.”?
- Or do you want them to help you solve some struggle you are having?
- Then, and this is a big next step, you need to educate them on what you need from them.
- If you just want a sensitive and caring ear, tell them that sometimes you might just need to vent. Then ask them if they would listen and show compassion without having to actually do or fix anything.
- If you want them to be alert for certain problems (low blood sugars, high blood sugars or simply unusual behavior or unattended alerts), you will need to educate them.
- If you might need their help in placing a new Pod, you will also need to show them and train them.
How to educate your advocates:
- First ask if they’d be willing to help you from time to time.
- If they say yes, teach them what they need to understand about your needs and what actions you need them to take.
- Role-play with them so that they feel comfortable with what you are asking them to do.
- Give them the tools to make them successful:
- Fast sugar/glucose tabs
- Glucagon (and teach them how to use it and practice)
- A list of phone numbers for them to call
- How to stop, fill and start a new Pod
- Check in again with them about how comfortable they feel about helping you. Ask them if they have any questions.
- Review and practice from time to time. You do this all the time, each and every day. But it continues to be new to them, until they need to step in for you.
Just a short story about my early life with diabetes. I was diagnosed at age 11, in the 5th grade. There were no blood glucose meters, only urine testing (pretty useless for low blood sugars). When I would experience a low blood sugar, I was coached to tell my teacher, who then told my best friend, Tina, to walk me to the nurse’s office, where I was given orange juice.
I thought that worked pretty well and also allowed Tina to get out of the classroom for a short bit. Many years later, Tina shared with me that she used to be terrified. She didn’t understand what was going to happen and how sick I was … and worried that it was all her responsibility. That’s a large burden on an 11 year old without proper education and appreciation. Yes, I’ve thanked her and apologized for causing her concern. All that could have been made easier with a better explanation and giving her freedom of choice to help.
Coming soon: Part Two: Advocacy and the Bigger Picture