They also don't teach them how to care for people with Type 1 diabetes. There are so many horror stories about how awful hospitalization is for T1Ds. So many doctors and nurses don't understand the complexity of treating the disease, or respect the patient's ability to treat it themselves while in the hospital. Not to mention how common misdiagnoses are: I was diagnosed as T2, when I was clearly T1. They didn't even do an antibody test, all because I was an adult. So many people (including doctors) still have the dangerous idea that T1D only manifests in kids.
I'm terrified of being hospitalized for that reason. I'll sign whatever paperwork needed in order to self treat with my CGM and pump. I've been doing this for 12 years, no doctor is going to be about to do it better.
This also scares me in terms of inpatient mental health facilities. They often don't even give you access to your own insulin and testing supplies. Which is a recipe for feeling much worse after leaving then entering.
> This also scares me in terms of inpatient mental health facilities. They often don't even give you access to your own insulin and testing supplies. Which is a recipe for feeling much worse after leaving then entering.
Also, many antipsychotic medications fuck with blood sugar regulation (to the point that "antipsychotic-induced weight gain and metabolic disturbances" have been an active area of research for 20+ years [1]), and "low appetite" is routinely interpreted as a mental illness symptom.
I've had a few really low points over the last couple years, where I almost checked myself into a mental health facility, but chose not to because of my T1D. It sort of forced me to come up with alternative coping mechanisms, which I'm kind of grateful for honestly.
> I was diagnosed as T2, when I was clearly T1. They didn't even do an antibody test, all because I was an adult.
Same. I was about 30, long distance runner and bike rider. Went from 170 pounds to 130 over about 4 months. Doctor shrugged and was like, “You must be addicted to carbs. It’s type 2 here’s metformin. Start eating better.”
I have since found 2 doctors who I like quite a bit. But I now know that I’m the only one on planet Earth who truly cares about my health. It should’ve been obvious from the start, but it wasn’t. Now I know. If I want to be healthy, it’s on me to get there.
> But I now know that I’m the only one on planet Earth who truly cares about my health. It should’ve been obvious from the start, but it wasn’t. Now I know. If I want to be healthy, it’s on me to get there.
This is especially true for T1D. You don't just go to the doctor twice a year and have them prescribe a set medication dosage you take every day. You have to constantly adjust and factor it into every decision, every hour, of every day, for the rest of your life.
The reality is that chronic diseases vary greatly from person to person, and a doctor just doesn't have the time/patience/first-hand experience to treat your disease optimally. That's why their best option in the 20 minutes they have with you is to just prescribe some hard core drug or procedure that is one-size-fits-all for your disease.
I've seen a dozen doctors about my own chronic disease and 90% of them are useless beyond prescribing the standard $30k/yr chemo drug (which I'm allergic to). The only doctor that has ever actually helped me in my recovery was a naturopath. She didn't have the ego of an MD and actually took the time to build and iterate on an individualized treatment plan.
Yes, I 100% agree. Constant decision making and second guessing and third guessing takes a huge toll. I’m definitely not a positive-all-the-time person but I am happy to get to use a Dexcom that gives much more useful information than finger sticks.
That’s fascinating that health care providers don’t trust the patients to care for themselves considering that if they couldn’t or didn’t, they would literally be dead.
I'm terrified of being hospitalized for that reason. I'll sign whatever paperwork needed in order to self treat with my CGM and pump. I've been doing this for 12 years, no doctor is going to be about to do it better.
This also scares me in terms of inpatient mental health facilities. They often don't even give you access to your own insulin and testing supplies. Which is a recipe for feeling much worse after leaving then entering.