When I was younger and people asked me what I hated about diabetes- I always replied “other people” or “the rest of the world.” Now- other things have been added to the list.. but… It’s still up there though.
I’ve had so many experiences- especially being in a small town in the south- but we all have. Luckily I’ve been able to mold a healthcare team I like and who respect me as a PWD (or whatever I’m there for). This hasn’t always been so, but I don’t sit around if it’s not going to work out.
I’ve actually written about relationships with healthcare providers- quite a bit- I firmly believe it’s important to have a good relationship with your healthcare team. It’s key!
and oh heyyyy- we wrote about the healthcare experience for Diabetes Blog Week in 2016!
Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.
A few years ago, I shared an unexpected experience I had with Diabetes Forecast (#6!) so I’ll plan to expand on that for the topic today.
I’m taking it back to the summer of 2014.
A few summers ago, I learned that sometimes advocating for yourself happens on the spot.
When I arrived as a volunteer at a camp for kids with special needs, I was told to turn in all of my supplies. At first I didn’t think any of it. I thought that they meant all of the extras and site change supplies- which I had stored in the med lodge at various camps that summer all ready. But then… the next day- I found out they wanted it all- including my meter, hypoglycemia treatments, and rescue inhaler. This, I explained, wasn’t an option. If I had a low, I needed to treat right away- and shared that I had been low that night. I shared that if I had an asthma attack- I needed my rescue inhaler- PLUS- in GA- with all of the humidity and my allergies- if I’m going to be outside a lot and exercising like at camp- I needed to take in the morning before going outside.
The nurse in charge questioned why I needed to check my blood glucose so often. Maybe I was brittle. I could call them when I needed something (they had less than 5 nurses for over 120 campers with a lot of medical needs). I argued with her more. I could feel the tears arriving at the corner of my eyes. Then she says- maybe I could do it in the bathroom?
I wanted to volunteer, but I needed to be able to take care of myself—and not in a bathroom. I brought up the oxygen mask example for airplanes. If I wasn’t able to take care of myself, how would I be able to adequately take care of a camper with extensive medical needs? I shared that I had volunteered at other special needs camps this summer, and this hadn’t been issue. I even shared my diagnoses when I interviewed and filled out all of my forms- why wasn’t this brought up earlier? Then she said- this isn’t your diabetes camp where you run with needles with no supervision. I told her- we didn’t do that- AND I had done other camps that weren’t diabetes this summer.
She mentioned her 10 years of nursing experience, I countered with my 15 years of living with diabetes. I realized I was in one of those moments- where no matter what I said or did- it wasn’t going to get through. This nurse was looking at me like I was just a patient. Like I didn’t know anything or know any better. Like I should blindly follow her.
I knew it was best at this moment to leave, although it felt a little like quitting. I had actually never had to completely leave a situation before- usually I could work it out or find a solution. I ran to the bathroom and cried my eyes out- wow- I hadn’t felt like this since high school. I gathered myself and looked for the camp director. It took me hours to find her- she didn’t even know who I was.
But when I mentioned I needed to leave- they briskly did so. I didn’t even have a chance to say goodbye to anyone in my cabin- or any of the staff at the camp grounds I knew so well.
I called the current director of the diabetes camp I know volunteer with (and was a camper). I told her how much I appreciated her- she knew our names- was clear with us- worked with us- and more. She immediately knew something was up- and let the staff at the camp grounds know what happened to me- and turns out they were worried something had happened to me because all of the sudden I was gone.
Several months later, I got a call asking to volunteer there again. They didn’t even know I had left early? So I explained.
“As an independent adult, you’ll advocate for yourself—often without time to prep—even when people don’t take you seriously because of your age. Self-advocacy can be asking for a Diet Coke. It can be asking those around you to not tell that offensive diabetes joke. It can also be a moment when you feel unsafe, and you need to listen to that little voice inside your head. For those uneasy moments, knowledge, guidance, experiences, and practice will be your friends.”
Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?
Honestly, if I were to turn that nurse into a puppet- I would have said all of the same things- but I would have left a lot earlier.
But- I’d like to share some tips about healthcare providers and experiences-
- Please don’t blame everything on my diabetes
- That being said- don’t let them blame everything on your diabetes if your gut says it’s something else. You are the expert of your own body.
- LANGUAGE MATTERS!
- There’s usually a lot of different factors going on.
- Yes- improvement is a good thing and needed– but it’s not a snap of the fingers.
- Try to be empowered- whatever that might mean for you!
The Blame Game – Wednesday 5/17- Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)
You can find the other posts for today, here.
andddd- here’s the participant list!
- #DBlogWeek Day 1: Diabetes and the Unexpected
- #DBlogWeek Day 2: The Cost of a Chronic Illness
- #DBlogWeek Day 4: #TBT: What Brings Me Down
- #DBlogWeek Day 5: More Than Diabetes
Hey you! Yes, you!
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