Monday, May 13, 2013

Share and Don't Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.) Other DBlog Week posts

What I'd like my doctors to know?

I  don't know everything.
Even though I am going to be a doctor one day if all goes well, I am not one yet.  Furthermore, even if I decide to become an endocrinologist, I will not be one for at least 8 more years. Even then, I will have a lot more to learn.  So even though I know a lot about how sorbitol might cause microaneurysms in my eyes and may damage the schwann cells in my feet, it doesn't mean I know what to expect with my diabetes.

I am afraid.
I am afraid of judgement. Of assumptions. Of you.  Even if you have never done anything to lose my trust, other doctors have. Other doctors have insulted me and berated me and scolded me without knowing anything about my life, and without offering to help me get better (my pet-peeve). So while you haven't done anything to lose my trust you have to do some thing to gain it. You have to fill back in the hole your colleagues dug you into.

I won't tell you everything unless you ask.
Man do I get frustrated when I talk to patient instructors and they tell me I didn't do a good job setting the agenda.  But somewhere in my heart, I really love it. As a patient I have a lot on my mind. I usually have an agenda in my head and sometimes it is even written down so I don't forget. The worst feeling is leaving an appointment with things left on that list, wondering if you'll get to them again in 4 months at the next 15min appointment. I actually have something on my agenda that has been there for 4-5years.  It is not urgent, and it is sensitive, and I still haven't brought it up with any of my doctors.

Im not the only one who is smart.
While I may be a super-educated in the "going-to-be-a-doctor" kind of way, med school wasn't even on my radar 4 years ago and I was very much the same kind of patient. Many patients are more educated than you give them credit, and just because I have taken the MCAT doesn't make me the only patient in history to know something about my disease. I live this disease 24-7-365. So do a lot of other patients. That's when I learn about it. Just because some people have low health literacy, does not mean that most do.

What do I not want my doctors to know?

I will avoid telling them things if I think it will disappoint them, or if I expect judgement. I also don't want them to know that I am very unsatisfied with my care right now, because I need help with my diabetes, not just with my basals.


  1. "I am afraid." Powerful statement, and one that really resonated for me. I'm afraid to admit some stuff to my doctor, and I always reminding myself that disclosing the things I'm afraid of is in my best interests.

    Doesn't make it any easier, though. :)

  2. You have a blog?!?! Oh my gaaaaahhh how did I miss this? Welcome to the blogosphere (a little belated, but I'm glad I found you :D )
    And if you need help with more than just basals, don't go looking for it in and Endo! Got to a CDE and a psychologist -- best steps I ever took!

    1. I am very timid in my blogging, experimenting still. Putting the link was a big deal for me.

      I am very happy with my CDE.

  3. My best care definitely came from a CDE, but I've been lucky in that the two clinics I've spent the most time at really do allow patients to have enough time for appointments. I'm there for at least 30 minutes, and I feel like we bypass a lot of small talk and get right into the heart of fixing issues. If you don't like your endo, I also suggest shopping around for a new one!

    1. Thanks for reading and for you comments Allison.

  4. In terms of diabetes care I have had a distasterous experience with a previous endo and 2 CDEs. I made enquiries and got myself a new one of each. I don't believe I could be happier with the ones I currently have. I think it's very important to have good HCPs for both your physical and emotional wellbeing, not ones that create grief.