Being your own Advocate

January 23, 2024

Diabetes is one of those things in life about which everyone seems to have an opinion, despite how little they know about it. This is often how your self-advocacy journey with diabetes starts. You tell your coworkers or classmates that you have diabetes, and the reactions range from, “my aunt has diabetes and she does keto” to the all too common, “you don’t look like you have diabetes.” Then some of them try to be pushy and tell you what you can and can’t eat.

It starts with peers

It’s important to make sure people around you know you have diabetes in case you need help with a low, which means that it’s unavoidable in diabetes to have these conversations. It can be easier to disclose your diagnosis to peers versus people like supervisors, managers, teachers, etc., so if you’re feeling anxious about it – start with your friends. In my experience, the more I had these conversations, the easier it got.

Since I was diagnosed at age 2, many of my first conversations were with children, so some responses were pretty hilarious. Here are some of my favorites (and my responses)–

  • Ew, can I catch it? (No, you can’t – but this was common for kids to ask back in my day)
  • Oh, okay. What does that mean? (well, I have to poke my finger and take shots…)
  • Cool! Can I walk you to the nurses’ office? (Sure, but you have to take turns with xxx)

I was lucky that I did not get this unpleasant response, that I have heard others have gotten: “Die-abetes; does that mean you are going to die?!?” “Or, our cat/dog has diabetes.” Some of the responses you will get from adults will sound similarly ridiculous or hilarious, but, overall, people tend to be very receptive to learning, in my experience. Most people will ask questions and try to be non-judgmental. If you’re the parent of a child with diabetes and your child is worried, you could let them practice self-disclosure with you to help ease the tension. Make it fun, add some humor, and give encouragement to your kiddo.

On dealing with authority figures

There will be a time in your life where someone tries to tell you that you cannot do something that you in fact need to do for diabetes. It could be a teacher, a coach, TSA at the airport, a boss in the workplace, or even a healthcare provider. You know your diabetes best and YOU are in charge of your body!! Don’t ever let someone who does not fully understand your needs try to tell you not to take care of yourself. You may ruffle some feathers or make people upset, but the most important thing is keeping yourself safe first.

For example, let’s say your blood sugar is low and you’re in a class–take care of your low first, and deal with the fallout later. Now, hopefully you have either a 504 plan or are registered with the disability office on campus if you’re a student, and this will cover you taking care of your needs. But if not, you may need to get those things to ensure you have accommodations to keep you safe. And most often having conversations with the instructor will help them understand that you were doing nothing wrong.

It can be tricky if it’s a supervisor in a work scenario as well, but there are laws that protect people with diabetes to ensure you are able to have reasonable accommodations that allow you to keep low foods on hand, check glucose levels, have adequate bathroom and meal breaks, and administer insulin when needed. I prefer to disclose that I have diabetes towards the beginning of my working relationships and typically have experienced supervisors who are very understanding to my needs. This may not always be he case so be sure to advocate for yourself and contact the ADA or an attorney if necessary.

Healthcare provider challenges

Honestly, most of my issues with advocacy in the last 10 years have been due to healthcare providers. It has been so challenging to learn to speak up in a place where I am not considered the expert but I know in my soul that I am right. The first few times that people said things to me that either felt bad or didn’t seem right, I let it go, and I simply did not go back to see that provider.

So often it was judgment that my blood sugars were not in range all of the time – shocker, I have type 1 diabetes and my blood sugars can be all over the place sometimes. This was with people I would see for my own diabetes care and people I have worked with as a nurse. It was so disheartening to have coworkers who didn’t fully understand life with diabetes judge me and question my ability to be a nurse – a dream of mine since I was a young teenager and further reinforcement for the need for nurses who do truly understand diabetes.

Non-diabetes providers

Pregnancy with diabetes brought on a whole new level of advocacy no one should have to experience. If you talk to people with type 1 diabetes who have gone through pregnancy, most will tell you they had the same challenges, which is truly tragic. The high-risk OB/GYN providers are not typically well-versed in type 1 diabetes and often have patients with gestational diabetes.

Here are a few things my team decided to do:

  • Tell me that I needed to switch insulin pumps because they did not know how to work the one I was wearing
  • Ask me to wear a “professional CGM” because they weren’t familiar with the Dexcom G4
  • Check fingerstick glucose levels six times a day even though I was wearing a CGM
  • PAPER LOG my blood sugars for 37 freaking weeks even though I was wearing CGM
  • One of the hospital doctors tried to take me off of my pump 12 hours before my son was finally born – he wanted to give me injections every 3 hours to correct highs but not give any basal insulin

It helped that I have had diabetes for basically my entire life and I have focused on learning everything I can about diabetes in my adult life. But there were many things that I should have called out but didn’t because of sheer burnout from dealing with the amount of ignorance on that team. It was easy to tell the doctor trying to cause me to have high blood sugars right before the birth to back off after working my butt off for 37 weeks to keep my glucose levels in the strict target range of pregnancy. It was not just about me at that point, but about me keeping my son safe.

What is harder is remembering that we all deserve to be satisfied with our healthcare experience, that we should feel supported and empowered by our healthcare team because diabetes requires resilience and persistence. We deserve to feel respected and what we want for our body and life matters. This may sound silly, because sure we all feel we deserve these things, but actually getting them is harder.

Speaking up when someone tells you that you need to be in “better control” or asks you why you have highs or lows isn’t always easy. Sometimes it’s the last thing you want to do because they have made you feel disrespected or judged and it feels easier to ignore it. But if you do have the energy, please try speaking up. Remember when you first started telling people about your diabetes and how hard it felt at first, and how it got easier the more you did it.

Speaking up when healthcare workers – OR ANYONE – makes you feel badly about your diabetes (or your weight, your food choices, or anything else!!) helps not only you, but all of us with diabetes. The more that we all do this and help change peoples’ understanding and opinion on diabetes, the better it is for all of us.

Written and clinically reviewed by Marissa Town, RN, BSN, CDCES