Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
I took the picture above while sitting in one of the examination rooms at the office of my endocrinologist one day. As I anxiously fidgeted on the crinkly white paper, I tried to reason with myself that the jittery nerves would fade and I’d be just fine with the overall experience… As I always was.
In the end, when it was all said and done, I was glad I had gone through with the appointment. We discussed how I was feeling lately and put forth a plan of action to get some routine blood work done. I was also able to get refills for a few of my prescriptions that were close to running out. Talk about productive! What was I so worried about?
For starters, I don’t feel I had the best introduction to diabetes care and education. I think that is the cause of a lot of the anxiety I have surrounding checking in with my health care providers. The original plan of action my first endocrinologist had me follow turned out to be archaic and outdated. I have since met and learned of others who had also suffered while under the care of this same exact man. What’s disappointing is that he is someone who is actually quite renowned in the field of endocrinology – just not diabetes specifically. Understanding that I was put in the hands of someone not capable of treating me due to a lack of sufficient Type 1 diabetes education and understanding is frustrating, but, it also taught me that despite their degrees and fancy pieces of paper, sometimes the doctor you’re seeing isn’t the doctor you need.
I think the poor foundation I built in the beginning caused me to stumble throughout the years, as I avoided appointments as much as I could. It seemed like I was always falling short of what I needed to be doing, never knowing I had other options of treatment plans that could better serve me. I, like many others, had a hard time feeling like I could be my honest self with the person responsible for guiding me to proper care.
I came to know Dr. Z simply because she was the on-call endo at the hospital I went to the first time I was admitted for diabetic ketoacidosis. I’ve been her patient for a few years now and though I know I should make an effort to actually see her more often, that’s something I’m trying to work on. Life is busy and appointments can be stressful but I understand, now more than ever, how important checking in with your medical team is. They can help you bring in the reins and see the big picture of your plan for the future again. Dr. Z has helped me through some truly trying and difficult times and was the only person to suggest that I may have gastroparesis despite having diabetes for such a short period of time. She even encouraged me to work on lowering my a1c and did what she could to get me approved for a pump and now also a CGM.
I’m truly lucky to have the endocrinologist that I do today. She’s not at all judgemental yet practices with a pragmatic, honest approach. She cares without coddling. I don’t need another friend, I need a doctor. But I also am a person who responds to kindness and consideration. Finding the balance is crucial and my doctor makes me feel like I have someone I can trust and respect.
Through my many hospital admissions over the years, I’ve found that there is a severe lack of Type 1 diabetes knowledge in that particular kind of medical setting. It’s honestly a little ridiculous. There are stories I could tell you that would cause your jaw to drop and you’d have a hard time believing that such things could be said or done by people who supposedly have been educated to administer care. I’ve had RN’s who possess bachelor’s degrees in their field say to me, “So you have Type 1 diabetes… does that mean you take insulin?” I don’t think it’s asking too much for the nurse who is taking care of me to know that type 1 diabetes means that the patient is insulin-dependent and that I test my blood glucose multiple times a day. That’s Diabetes 101 and if members of our healthcare team are unable to retain such basic and simple info, then we should all be concerned with how much else they do not fully know.
It is my hope that as time goes on there is more advocacy that educates both the general public and those in the medical field about the complexities of Type 1 diabetes. Sometimes I wish that Type 1 and Type 2 diabetes had entirely different names as to help clear up some of the confusion caused by the similar nomenclature. It can bother me when people who don’t have diabetes make assumptions or don’t grasp the accurate information, but it is an entirely different horror to think that those I’m entrusting my health and well-being with may be ill-equipped and ignorant. I’m sure if those of us living with Type 1 continue to speak up and fight for better overall knowledge and understanding of our unique condition, then the experience we have with our healthcare providers will improve tremendously.