Be Your Own and Best T1 Advocate

ADVOCATE:  n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc. (as in “an advocate of children’s rights”)

SYNONYMS: champion, upholder, supporter, backer, proponent, spokesperson, campaigner, fighter, crusader;

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.

Advocating for yourself sounds like just one more task to add to the pile of things you must do to live with diabetes.  “No, thank you,” you say,  “I already have enough to do, between testing and bolusing and counting carbs and exercising and managing my insulin, my medications, my dosages, etc.”  Phewwwww … enough already!  Right?!

Well, no, not really.  It’s really important to advocate for yourself.  After all, who’s more important to your own life than you?  Who will see to it that you are treated well and survive if not you!

“But it is really hard to do for myself,” you say. “And how could I ever find someone who can understand everything that I do for my own diabetes care so they can ‘stand in’ in an emergency?  I don’t even know if my own spouse/parent knows enough and would be calm enough to step in for me in an emergency.”

Yup, this is difficult; but it is important.  Just admitting that we need to do this and we need help is hard enough.  Add to that the impossible task of identifying our support system and how to “train” them to help us, if needed, and it seems impossible.

DON’T PANIC!  Since advocacy is so important,  let’s break it down into what you can do and what will make your life better.

No matter what your age and no matter what your living situation is, if you have diabetes, you already manage lots of aspects of living every day with the disease.  You:

• Interact with your doctors and other healthcare providers
• Order your medical supplies and prescriptions
• Modify your dosages and settings
• Monitor your blood sugars and deal with highs and lows

When life is bouncing along merrily, you can handle this just fine, for the most part.

Sometimes life throws you a curveball, such as:

• A cold
• The flu
• A bad infusion site
• A miscalculation of carbs in a meal
• A random diabetes disaster

And you have to make corrections, on the fly.

And you can do that!  You have the tools and the knowledge to handle these surprises, and the resources to get help if you need it in a special situation.

BUT THEN SOMETIMES, you get a MAJOR CURVEBALL!  No, let’s not even call it a curveball.  Let’s say you experience a MAJOR MONKEY WRENCH!

“Throw a monkey wrench into the works” dates to the early 1900’s, according to the American Heritage Idioms Dictionary. The basic meaning is pretty straightforward, if you imagine working on industrial-age machinery with a big, heavy wrench. “The works” refers to the machine, and if you dropped or threw a massive wrench into it, you could easily jam it up pretty badly.

So, a major monkey wrench in the management of your diabetes might be when you have a serious medical situation, such as a complicated doctor’s appointment, an unexpected trip to the hospital emergency room, or a stay in a rehab facility.

Since you can’t predict when the wrench will fall into the works, you need to be prepared ahead of time, as much as you can be, to advocate for yourself AND prepare a support person to advocate for you, in the event you are unable to.

For example:

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, insulin, or supplies
• Make sure you know how to reach your provider if you have further questions.  If you are not certain how to follow up, ASK your provider, “If I have further questions, how may I reach you, please?”

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.

Explain these problems and what they will notice if you are not communicating your needs.  Then tell them what you want them to do (tell you what they observe, take action such as getting you sugar or juice, or call for help).

• If you might need their help in the mechanics of your diabetes life, such as placing a new inset or pod for insulin delivery, you will also need to show them and train them.

How to educate your advocates:

1. 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.
2. Role-play with them so that they feel comfortable with what you are asking them to do.
3. Give them the tools to make them successful:
   1. Fast sugar/glucose tabs
   2. Glucagon (and teach them how to use it and practice)
   3. A list of phone numbers for them to call
4. Changing your pod or pump cartridge/tubing:
   1. Show them all the steps, as you make your own change.
   2. Next time, coach them through the procedure.
   3. Then let them practice several times.
5. Check in again with them about how comfortable they feel about helping you.  Ask them if they have any questions.
6. 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.

Preparing an Advocate to Support You in a Medical Emergency/Hospital/ER Visit

Your advocate who you may have trained to assist you with things like addressing blood sugar issues or changing a pump may also be a good candidate for assisting you in a true medical emergency.

For example, if you suddenly find yourself in the hospital ER, you may be unable to explain the equipment you are using to manage your diabetes or administer your own insulin doses. Your advocate can be the person who provides any paperwork you have prepared in advance that explains all your devices, medications, and dosing (see the section of our website on Emergency Preparedness and Hospital Stays).

That person can also be the one to advocate for your being able to continue to wear those devices, for learning to administer insulin for you if you are unable, and advocating for you to resume your own diabetes care when you are able.  This advocate needs to be a person with a cool head, with a pleasant demeanor under pressure, and with the knowledge of your needs.  Often this can be someone NOT in your own family, but another knowledgeable Type 1 “diabuddy” who you are authorizing (in partnership with a family member) to support your care.

To learn more about Diabuddies, see our Diabuddies article!

Last updated 08/26/2025.