There’s something going on in the diabetes world that I don’t quite understand. Well, I do understand it to a point, but I don’t understand how widespread it seems.
The Facebook and other social media posts come often, and go something like this:
Ugh. On our way. Wish us luck.
Nervous. Hope I don’t get in trouble.
It’s that day again …. How I dread these days.
While it may sound like folks heading out for a root canal, it’s far from that. These folks are talking about heading to endocrinology appointments. You know: the place we go to get education, support, information and just plain help. And recently, it seems, more and more folks just plain dread it.
I don’t get it. Now, I know: there are times in our lives with T1D when seeing our labs (particularly our a1c results) are a sometimes-painful wake up call (even if deep down we knew what we were going to see; seeing it just makes it real). Facing that can be overwhelming, and not wanting to do it is understandable.
But here’s my take: it’s information to work from. And your endocrinologist and team are just that – your team. They are there to support you, help you, lift you and yes, make your life with diabetes easier, not harder. It’s not their job to reprimand you; it’s their job to boost you up no matter what the current state of your diabetes life is.
If it does not feel that way as you head there, no matter what your current situation is, it’s time to think things over and take some kind of action.
Am I wrong about this? Because for the most part, in going on 16 years of helping my daughter grow up and live with T1D, we’ve had good medical help experiences. I’m not saying there have not been bumps in the road. But overall, my goal for my daughter has always been for her to head to those appointments not worrying about being lectured, scolded and even attacked, but rather heading to them to learn, get support and figure out what’s next.
And to me, most everyone can have that experience. Sure, there are some folks who live in the middle of nowhere and have little – if any – choice on who they see for their diabetes care. I feel for them, and I can only hope we can find a way to funnel more endocrinologists (particularly pediatric) into the system in the future. But if you live within, oh, three hours of a major city, you should – for the most part – have choices. And choose you should.
I always saw choosing our endocrinology team much the same as choosing which teachers were best for my children as they grew up. True, you can hear on the street who the “hot” teachers are; the ones using the newest techniques and speaking at the most events and attracting the most buzz. But when it comes down to it, finding the right teacher for your child is very subjective. It’s as much a personality match as anything.
The same goes for doctors and nurse educators. The team that clicks for one may not be best for another.
So what should one do if they are feeling dread as they head in for an appointment? Here are my thoughts:
*Think about what you want, need and expect from your endo team, write it down and then, face to face, share it with them. Then: expect honesty. We diabetes patients are a needy group, not because we were not loved as kids, but because Type 1 Diabetes is an endless, every-changing, constantly challenging state. Your endo team should be able to tell you, with all honesty, how often and in what way they can and will respond to you and help you. Then you’ll either like their answer or not like it, stick with them or politely ask them to help you find a team that can give you the time and attention you need.
I think it’s important here to remember that at times, we all should expect extra time from our team. Diabetes is not easy, and at points in our lives, we need more face to face, more phone time and more input. But on the same level, there are times we need less. We patients can do well by our medical teams by remembering this, and when we can, not ask for as much contact. Things like being on top of prescription refills so we don’t have to page them off hours (except in true emergencies) for things like scripts. Respect of time goes both ways.
*Work on building trust. I kind of scratch my head (okay, I bang my head against the wall) when I read posts from parents who say they feel their endo team does not care about their child enough to suggest the right daily plan. I’m sorry – but have you ever looked into how little a pediatric endo makes when you break it down by the hour? These folks have chosen this area of medicine knowing how difficult and time-consuming and emotional (and rewarding) it can be. They do care. If you feel like they don’t, you need to tell them that, or find another. If you are listening to your endo and they going home and saying “He or she is completely wrong; I’m doing it this way,” you need to voice that to them. And then see where the chips fall.
*Don’t be surprised if you need to change over the years. You as a person evolve, and sometimes, while you may love a doctor or diabetes nurse as a person, your needs a patient change. It’s okay to move on. I know, it feels even worse than breaking up with your hairdresser. But with a good conversation about why you feel you need to make a change, your endo may even help you find the right “next person” for you or your child.
Our first endo was a great one. Dr. Jake Kushner was just a kid back then, really, (thus the moniker I put on him that has stuck: Dr. Dude. I mean: how many endos skateboard?), but there was something about him I just liked right away. I could tell we were like-minded: I was always pushing for the new and the emerging, and he was always interested in pursuing that too. But he also understood my daughter as a person, and me as a mom. And he respected us. I loved, too, that his overseer at the time was Dr. Joseph Wolfsdorf of Children’s Hospital in Boston. Dr. Wolfsdorf is a “Gentle giant,” a tall man with a booming voice with a heart of putty that just molds for every child in his practice. We were blessed to have them – and Texas Children’s is blessed to have Dr. Dude in charge of pedi diabetes now. We were also blessed, from day one until she was an adult, with Susan Crowell of Children’s as our CDE. She was – and is – remarkable not only with her expertise (her husband was one of the first people ever to go on a pump) but with her kindness in even the most stressful of situations.
When Dr. Dude left, we bounced around a bit. First we went with the “hot endo” everyone was talking about. He was brilliant, and helped us think through a few things. But we were not a perfect match. I did really admire how, six months after my daughter’s DKA scare (self-inflicted), he suggested she not have her a1c drawn for a couple of visits. “I know things are fine, and I know it’s stressing you out,” he told her. “So let’s just not even go there. Take a break from your a1c.” When he left for another type of endocrine practice, I decided my daughter needed a woman. That was our bump in the road. This woman believed in threats and judgement. It felt right to me (I was scared for my child at that time) but my daughter, who had been urged by me since day one to be vocal and honest about her medical relationships, balked, saying “that kind of thing does not work for me.”
So she made a change. She is now with Dr. Howard Wolpert of Boston, the man I call “Dr. Wonderful” in my blogs. They are an amazing match. Lauren is loud and outspoken like me; Dr. Wonderful is calm and quiet but to the point. Lauren says she never, ever feels judged when she goes to see him, and she always comes away with a good feeling moving ahead. He’s counseled her wisely (like pushing her to go to “diabetes rehab” and urging her to hold off on a CGM until she had redeveloped good diabetes habits [she’ll start on a CGM in May!]).
And here is the thing: none of this has been easy. Dr. Dude and I sometimes disagreed. Poor Susan Crowell probably wanted to throttle me from time to time (and Lauren as well). Dr. Wonderful has listened and helped as Lauren and I remain a team but transition to her being her own diabetes CEO.
But honestly, never (other than that one challenging endo we moved on from quickly) did I ever feel dread heading to an appointment.
Your medical team is your team in every sense of the word. Their job – no: make that their absolute goal – is and should be you and/or your child’s happiness, comfort and health with diabetes on board.
If you feel any other way, speak up. And make things better. You deserve it.
I hope you will share your endo experiences — good or bad — below. We can all learn!