Hello, it’s me. But do you know me?
I was wondering if after all these years you’d like to meet
To go over everything
They say that time’s supposed to heal ya- But I’m still struggling to work through my experiences with healthcare adding up.
There’s such a difference between us I know- I’m “just” a “patient” without the degree that is so valued, but this doesn’t mean I’m any less when I sit across from you.
And a million miles
Hello from the other side- from the person who lives my life every day and you might only see me 3-4 times per year or only once per year.
I must have called a thousand times
Hello from the outside- I know you don’t believe me
At least I can say that I’ve tried”- But I’m really trying.
“Hello from the other side” an honest confession with honest questions I have. Thanks Adele, “Hello” feels very applicable to this right now. The moment I started thinking about writing a “confession” letter, these lyrics have been stuck in my head.
Spoiler- writing this blog post was what I needed after recent events and very healing. (Writing works wonders!) Also- it’s a long one!
To the Healthcare Providers of my past, present, and future (Diabetes and non-Diabetes related)- in no-particular order or just one person- ranging from the positive to the negative experiences,
Hello, it’s me.
Do you even know my name? Or do you only know me by a file record/ID number or my A1C?
Are the only parts of my life that count, in that file? Only the Diabetes parts?
Do you know what my Diabetes and non-Diabetes related accomplishments are?
Do you really expect me to never have low blood sugars?
Do you expect me to live in a bubble? Where all of my days are EXACTLY the same and I never venture out?
Please tell me, do you live life like that? I understand routine to an extent.
Now to be honest:
I feel like you decide my value based off of my A1C or how many lows I have. I feel like the accomplishments I share with you about my Diabetes aren’t the ones that matter to you.
Usually all I see is the white coat, and I’m immediately on guard.
When you tell me to just get over something or have it fixed by now- when it’s related to anything- but especially my mental health- that will not do.
I will not let you talk at me. Healthcare is an active process and I’m the one who lives it every day.
If you ask me what happened at this specific day several weeks ago at a certain time, I will most likely not remember.
If I remember and it’s related to a food I thoroughly enjoyed- I will not apologize- I will tell you it was worth it. But I understand moderation, and I hope to figure out how to handle that situation with my Diabetes. Will you help me and not just berate me?
And sometimes- the appointments do not help. Often, I feel defeated after them.
During burnout I didn’t feel comfortable talking about it with you. I also felt ashamed so I decided to cancel appointments instead.
Do you wonder why I never came back to your office?
Do you know I still remember you telling us to go home and nothing was wrong? Do you remember finally being convinced to check my blood sugar? Do you remember shouting the number for everyone to hear?
Do you remember when I sprained my ankle, you said it was because I had Type 1 Diabetes?
Do you remember that when I was having major problems with my period, you said it was because I had Type 1 Diabetes?
Do you know I still remember you said “I was killing myself” when you asked my A1C at an eye appointment?
Do you remember when you called me a crazy stressed out female, and that nothing was wrong with me?
Did you really need to make a big deal about my Diabetes management during one of the hardest years of my life? I recognize I wasn’t at my best.
Do you know that reading and hearing “she’s a hard stick” for the majority of my appointment was upsetting?
Do you know that reading “uncontrolled Type 1 Diabetic not meeting goals” on my check-out form stung? Especially when we didn’t make any changes or even talk about my goals.
Do you know I’m actually terrified of needles?
Do you know I despise the term brittle? Stop using that term.
Do you know that if you comment on your medical expertise or years of experience or your credentials- to prove a point or shut me down- I will come back with full force?
But, did you think or even know about how crappy my insurance was at one point?
Now, to be honest with you:
If I met with someone and talked about my relationship with nutrition and eating and they didn’t know I had T1D, I would fit the criteria for an eating disorder. Why don’t we talk about that more?
Yes I do forget- I forget to check my blood sugar or bring my pump site supplies so I have to go a little longer or go the d-hacks route. I even forget to give insulin sometimes. I try not to, but it happens.
I do not log my blog sugars. I don’t really know what would truly convince me to. Maybe someday? But I don’t want to lie and say I’ll try if I really won’t.
When I was a teenager, those logs you saw were filled out in the car ride there and after the most recent days, the data was made up.
Sometimes- especially during the holidays and when I’m very stressed- I tell myself to be content with blood sugars in the 200’s for a small period of time because if I’m aiming for perfection- it will be disappointing.
I don’t change my lancet or pen needled every time.
I have unrealistic fears of DKA.
When you warned me about Diabetes Burnout, I ignored you.
I wasn’t great at site rotations- as a kid I was too scared- and as a teen I favored spots- but I learned- and at the time- I was just told to be careful and try to get better at rotations.
Now that I have a CGM, I struggle to physically check my blood sugar more than 2-4 times per day.
I’m still not great at rotating where I check my blood sugar.
As a teenager I started skipping blood sugar checks while I was in school- sometimes just forgetting, but often- I flat out didn’t want to.
I’m glad that when you noticed, you didn’t call me out. We had a conversation about it, and it helped me to feel human.
Sometimes I hate Diabetes. I really truly hate Diabetes.
But there are also times where I appreciate Diabetes and feel the important influence it has had on my life.
A lot of the time, Diabetes really isn’t even on my mind or I’m indifferent about it.
I really want your help. But sometimes, I’m not even sure where to begin.
Do you know it was refreshing to be called out that I get anxious for endo appointments? And you wanted to know why?
Do you know I appreciated the fact when I asked to change and/or switch management tools you didn’t just say no and we talked about it?
Do you remember putting my Diabetes management in the background for the most part when my dad passed away?
Do you know that I am so glad you recommended Diabetes Camp?
Do you know, I’m glad you came and got me when bloodwork wasn’t going well? And you let me gather myself before officially starting the appointment?
Do you know I feel like you are the reason I got diagnosed with time to spare, because you have experience with Type 1’s and eye care? And that this is why I stayed loyal to your practice besides the brief time because of finances?
Do you remember helping us create change in my school system? And being wonderful with school and healthcare?
Do you know, that I’m glad you told my parents to stop talking sometimes- even as a kid- so that I could speak up and ask questions? It helped me to become an active part of my healthcare.
Do you know, that I appreciate when you kicked my parents out of appointments? It made me feel that what I had to say mattered and that my experience was important.
Do you remember that time you let me cry in the office- and it really wasn’t even Diabetes related? I needed that safe space.
Do you know that you are still my inspiration to this day?
Do you know that when I come in- and you don’t focus on the Diabetes, that I appreciate that? Because it’s really not what I’m there for when I’m not going to the endo.
Do you know how much it meant to me that you researched mental health and diabetes along with its interaction with medications for ADHD- and what the Diabetes terms I mentioned meant- so that we wouldn’t spend time talking about just that during my appointment? That you helped to answer my questions. That you celebrated my Diabetes/Mental Health related accomplishments.
Do you know- that I appreciate that you set “less basal rates” for one of my goals because I went a little overboard with them when I got the CGM?
Do you know what it meant to me when you complimented some things or said what I was doing well or improving on? It’s a nice reminder. But then we got down to business to figure out things we could change or improve.
Now to be honest:
Change takes time. and. It’s not all at once.
I want to keep improving.
I upload my CGM every week to catch patterns.
I now keep track of my pump site and CGM rotations on a piece of paper.
I got up to about 17 different basal rates and over the course of a year got myself down to 8. I’m still working on it.
I do research and reach out for help.
I put in exactly enough insulin to get by for 3 days so I change my pumpsite.
I use POLI to help with my Diabetes related fears and anxieties.
I’m very passionate about mental health and Diabetes. I strive for self-care and self-love related to Diabetes. And also not just related to diabetes.
Do all of you know that the positive and negative experiences I’ve had, shaped me? Have shaped how I look at Diabetes management? Have shaped how I look at healthcare? That these experiences influence my healthcare decisions and healthcare provider decisions and interactions?
Did you know that these experiences impact my comments and sometimes even anger at healthcare? Did you know that these experiences are part of the reason “I do what I do” in terms of blogging, DOC involvement, and being so passionate about advocacy?
But did you know, I’m still learning? Did you know that I want guidance and help to for the better in terms of my health? Did you know that my overall goal is to have a positive, respectful, and equal relationship with my healthcare providers? And that I’ll keep looking until I find it.
You see, to be honest. I won’t settle. I won’t be passive. I won’t be quiet.
I promise and embrace that I’m most likely that “pain in the ass patient” the office talks about. But if being a pain in the ass patient means I want to have conversations and not be talked at; or try to make sure I talk about what is on my mind; and not allow myself to feel disrespected. I guess I am.
Because this is my health.