An Open Letter To The Nurse That Just NEEDS To Say Something.
I have learned to spot you even while I’m too sick to stand. Because I fear you.
To you, I am the defiant Diabetic who just isn’t doing what I’m supposed to. Maybe I’m uneducated about my condition or simply don’t understand how severe it is. You can help! You can save me. Someone has to have a serious talk since I’ve been in the hospital twice this month in DKA.
So you come in to take my vitals, then shut the door and switch off the TV. You take a seat by my bed and try to force eye contact, but I have been here so many times that I’m looking anywhere else. I’ve already shut down and gone into panic mode before you say a word. The next ten to forty minutes are filled with questions about how and if I take care of myself, horror stories about blindness and amputation and death, asking about mental health issues and offers of resources and services. And me, breaking down inside and trying to hold it together until you leave. Because if I start crying, you’ll never stop. Just hold on until they leave.
Now, I’m not ignoring you because I don’t want to do the work. You’re not going to be the one to break through to me because there’s nothing to break through. I AM doing the work.
“But Type 1 Diabetes is a completely manageable condition and you can live a long and happy life with it if you just test and take insulin, eat well and exercise!” Some form of this is always said. And its the truth, right? You see all these athletes and musicians and so many others with Diabetes be so successful in the media! Look at all these positive stories! But its not always that case. Its absolutely fantastic that these people can excel with this disease, but the truth of it is… they got lucky. They had access to great technology and were able to afford healthy food and their medication, had time and energy to do it all and get ahead in their career.
Not everyone is so lucky. Insulin prices are soaring, technology isn’t as widely available, healthy foods are more expensive, some have other illnesses that conflict with Diabetes, some are just affected differently by the disease, and a million other reasons. Not everyone is lucky enough to be healthy enough to be your inspiration fix of the day.
For me, I’ve never had much luck. If it wasn’t for shit luck, I’d have no luck. I was diagnosed when I was ten years old. I got so sick before anyone did anything because the symptoms for Diabetes are so vast and generalized that they’re often mistaked for flu symptoms or something similar. After a few “It’s allergies” “She has migraines” and “It’s just a stomach bug” the doctor’s visits became “She’s faking to get out of school” or something similar. I was nearly skin and bones when I went into the ER that night. My heart was beating incredibly fast and I was having trouble breathing. I’d been sick for so long that every aspect of who I was as a person drained out of me. I hadn’t kept food down for so long, I stopped trying to eat most times.
I remember bits and pieces of those first four days in the ICU, but they’re foggy and scrambled at best. I know my dad cried. I know the doctors had told my mom they’d never seen someone come back from being so sick. They had to slowly lower my blood sugar and get me out of DKA because they were concerned about brain swelling. But the clearest memory i have of bring in the hospital that first time, is the nurse speaking to another in the background while I was crying as yet more wires and tubes were stuck into me. “I thought they said this one was a ttooper…”
It is a trend that continued on as I went through puberty and the long acting insulin my doctor had me on stopped working for me. I needed a different type because my body and what it needed had changed, but hospital trip after hospital trip and no one investigated that option. No, it was my fault. I was sneaking into candy. Not taking my insulin. Why wasn’t I doing better? The Office of Children’s Services was called on my parents for medical neglect before anyone thought there was another issue happening.
It wasn’t until YEARS of this went by that I got a continuous glucose monitor and could show irrefutable evidence that IT. WASN’T. ME. FUCKING. UP. Then I was switched to a different insulin and everything was immediately better. But the damage had been done. I now fear hospitals, so much so that I had a panic attack before going to see my newborn nephew and sister in law in the maternity ward. The smell of rubbing alcohol makes me feel physically nauseated. I distrust any medical professional I go see and have panic attacks before appointments. I had severe self esteem issues and doubted everything I did concerning my care. I’m 22 and I need my mom to call and make the appointments and tag along with me to act as my advocate or I cannot force myself to go. I have issues asking of help and admitting when I’m sick because I don’t want to go to the ER. After so many instances of DKA, my blood sugars became so much more finicky and I noticed I’d get sick a lot more. Every stomach bug, flu, and cold that went around always made it’s way to me. And I’d end up in the hospital because my sugars would go haywire and managing it at home had become impossible. Even in the hospital, while I’m on an insulin drip with a full team of professionals and completely NPO, doctors still have issues managing my blood sugars. The first time a doctor admitted that and told me it wasn’t my fault, I cried for a good hour just in relief. Someone finally believed me.
And after all this. It happened again. Just this past year. I was in and out of the hospital again, but someone caught on quicker. It only took a few months before a doctor tried to find an underlying cause, but only because after I was out of DKA, one of my labs was still off and getting worse instead of better. I was diagnosed with Secondary Adrenal Insufficiency and Hypothyroidism caused by Hashimoto’s Thyroiditis.
It was a mix of emotion. I was scared. Three autoimmune diseases. What the fuck was my life going to look like now? However, I mostly felt relief. Finally, I had answers. Finally, I had treatment to make it better. I was feeling better and my Diabetes followed suit. I cut my A1C in half, from 14 down to 7.5 in a month.
But my endocrinologist disagrees with the diagnosises. He says my thyroid and pituitary hormone levels aren’t that far off to warrant them. So I’m weaned off the medication that did so much good. And with each dosage drop, I return to feeling like shit. I hadn’t realized how bad I actually felt until I felt better. And by November, 2018, I was off medication completely.
Now,right now, everything is repeating. I was in the hospital twice last month. I feel awful every day again, and my A1C is back up to 12, according to your last report.
You don’t see the pattern, though. You don’t see anything beyond that number. 12. Anything higher than a 7 means I’m “noncompliant” a bad Diabetic that’s not doing the work. And you just have to be the hero to save me. But you’re not. You are a bully that waits until my mom goes to get food from the cafeteria so I have no support. You have me cornered while I’m sick and weak and don’t have the energy to defend myself. I am at my most vulnerable. While I’m working with doctors, trying to get them to believe me again and help me find the new underlying cause, you need to feel powerful and heroic.
You don’t even have the whole story. You glance at my chart, see that number, and You’ve decided. You don’t see how much work I put in to getting very little results. You don’t see all the issues I’ve had before. I don’t think you even care at this point. If you have nothing more to offer than horror stories, lectures, and pointed fingers, please don’t bother. I honestly can’t take it anymore. Especially when you’re so hypocritical as to chastise me about taking better care of myself, yet can’t manage to do it yourself for one day.
Little hint, if you mix my potassium into orange juice, I need insulin for that! And my blood sugar isn’t going to come down if you give a correction, have me eat, and don’t dose for the god damn food!
Thanks for all the “help.”
- A frightened, traumatized, and exhausted human that doesn’t know what’s going on with my body right now.
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