The Healthcare Experience…Day 4 of DBlog Week

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!

Today’s prompt is a tough one and a very interesting one.  I no longer have a lot of  dealings with the health care system regarding my son but over 16 years we have definitely had highs and lows.

Our initial foray into the world of diabetes, involved a horrific healthcare experience–my son was misdiagnosed, sent home and almost died.  Thankfully that was probably the worst of it (I know it couldn’t get much worse could it?).  The upside was when he was finally diagnosed, we were given a doctor who truly helped to set us on a course for success.

My son’s doctor believed in the most advanced treatments.  He encouraged me to learn and to try new things.  The rest of our diabetes care team was the same.  They taught us carb counting when others were still using exchanges.  Equally important, as I began to learn and explore the world of diabetes, they were eager to learn from me.  That was both empowering and endearing.  They cared–we were a team.

Not everyone we encountered “got it” however and it has been important for me to try to empower my son in his own care.  Soon after my son moved away, he had some sort of an attack (for lack of a better word).  The doctors worried that it was his appendix but they never did establish what had happened.  He was rushed to the hospital and the health care team attempted to manage his diabetes.  My son told them point blank “You deal with what brought me here. I will handle my diabetes.”  I was very proud.  My son is quiet.  It was very important for him to be able to do this for himself.

He is now a young adult.  He now sees a new team of doctors.  He faces new challenges…and as a mom on the sidelines it is driving me crazy.

He doesn’t feel that the new team has any idea about his diabetes care.  From my limited knowledge, I believe it is made up of people used to dealing with older adults with Type 2 not young people who have lived with Type 1 all of their lives.  Because of the area that he lives in, he is unable to “fire” them and find a new team.  I have reminded him to politely let them know that he does know what he is doing.  If he is showing them readings like I saw when he visited me, they prove that he does have this down pat.

For the moment, he is biding his time until he can move to a new team.  I am hoping to see him move back with me this fall to attend trade school. I have a friend who is now a CDE for adults. I am hoping to be able to get him in with her. I think it will be a huge help to him on all levels–she is a nurse, she lives with diabetes, and she has had diabetes since she was his age. A win-win-win.

In the meantime, the issue does continue to frustrate me.  Youth with diabetes have enough challenges.  They face many issues with transitions and lifestyle changes. It would be nice if more of their diabetes teams could be supportive and work with them.  There has to be a mutual respect of knowledge.

I continue to remind my son that the health care providers have something to offer and he must share with them that he is knowledgeable as well.  He finds it a challenge.  He feels his knowledge is far greater than their’s and sadly, it may well be true.  I then remind him that he has been very lucky. Over the years he has sat and spoke with some of the greatest diabetes minds in North America.  This is not a privilege that everyone has had.

Is there an answer? Balance.  I truly wish that there was more balance.  Patients are learning more now through their own research and through the experiences of others.  Doctors and educators are also learning but there must be a partnership.  Neither should be in a power position.  Both should be working toward the common goal of best physical and mental health for the individual.

5 thoughts on “The Healthcare Experience…Day 4 of DBlog Week”

  1. Oh my goodness, the misdiagnosis of your son must have been so scary! I have heard that a few times this morning reading other D-Blogs and I can’t believe how prevalent it seems to be!

  2. I understand exactly how you feel! When my son first became ill, at age 28, the doctor then asked me if I was sure he wasn’t on drugs! I was so pissed off, it still makes me do angry today. I took him to emergency after he kept passing out & thank god there was a doctor that recognized his symptoms & helped him right away. He was initially diagnosed with Addison’s disease complicated with diabetes type 1. It’s still been a battle with his anger & refusal to accept help from anyone, so I try to help him subtly, like making sure he eats properly, but there’s only so much I can do, the rest is up to him

    1. And that is the hardest…not being able to fix it for them and having to watch them make their way. Good for you for being there for him. I hope he finds his way soon!

  3. Newfoundland and Labrador doesn’t fund pumps for people over age 25. No wonder your son is an anomaly. I’m sure my type1 diabetic husband I with our pump + cgms would be a strange situation for healthcare workers used to syringes and blood glucose meters, too. Good luck with all this. Wouldn’t your son see and endo and resident and CDE in St John’s rather than just a CDE? Endos go to all sorts of conferences and have lots of information and new products. I really think the average CDE knows nothing about how to administer insulin with a pump while consulting a cgms.

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