Today's topic is The Blame Game, and here's the prompt:
The Blame Game - Wednesday 5/17
Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)
(Taken from the Topic Page of Bitter~Sweet.)
When the third word of your child's diagnosis is a word that carries additional (and incorrect) meanings, it's easy to find yourself swimming in the ocean of blame. My son's diagnosis is Type One Diabetes. However, that last word has so many negative connotations, that many people can't see the forest for the trees and hear the truth about what Type One actually is. We've had our fair share of people asking me if Michael got this because he ate too much dry cereal for a snack. I've had people pat me on the back and tell me "well, at least he'll grow out of it." I've had people say to third parties (who then tell me what they've heard) that Type One Diabetes is no big deal because they know someone who has it, and that person is doing fine.
Well, we've all seen ducks swimming on a pond and they all look like they're doing fine too. We just can't always see their little feet kicking like mad under the surface of the water, just so they'll stay afloat.
We've had our disappointing endocrinology visits. The ones where a student doctor comes in to evaluate Michael and ends up casting blame on me for how I've managed him. These student doctors are asking why Michael's diabetes isn't controlled. And I wonder, "whose diabetes is controlled?" My mother-in-law came up with a jingle to be sung to the tune of "If you're happy and you know it" and the words are "We can only manage, not control." Type One Diabetes can be managed from day-to-day but it is a feat to have it be controlled. I think every pharmacist and every endocrinologist should have to spend an entire day with someone who has Type One. Maybe then they'll get just the tiniest peek of what goes on to keep that individual alive.
I think the student endocrinologists need more hands-on experience before they assume the role of blame-caster. They don't see the behind-the-scenes events that can affect one's A1C, for example. This is just a snapshot of average blood sugars over the past 3 months, but it doesn't tell you what life events happened in the last three months.
If I could speak to the student endocrinologist that we saw in May 2015 (our second endocrinology appointment, by the way) (more can be read about that here), I would tell him:
"Only we know if our kid had a major growth spurt (which can affect blood sugar). Only we know that our child caught a nasty stomach bug that landed him in the ER to rule out DKA. Only we know the fear that parents (and anyone who has or deals with Type One) have and how that fear can be haunting in the middle of the night when we have to make judgement calls on how much insulin we should give to our child to bring down a high, or how much juice or jelly to feed to our child to bring up a low (not to mention the guilt we feel over ruining his teeth by feeding him sweets in the middle of the night-- hours after teeth have been brushed). Let me remind you that I have not been silent. I have diligently called in blood sugars to the diabetes educators for 10 months now. I don't fudge the data-- they see what the blood sugars are. This isn't a surprise or a shock to them. And I should not have to shoulder the guilt of this on my own. The A1C doesn't indicate how well I can do my job as a parent. But understand this, we are less than a year into a diagnosis that has changed our lives forever. We are scared. We are learning. We are getting our son into blood sugars that are closer in range than he's been so far. We are trying. Do not cast blame on me for a disease that cannot be controlled. And do not assume that an A1C is an indicator of how much I love my child. I would take this disease from him in one second and I would NEVER regret my choice to do so. I love my son and I have to fight to keep him alive everyday. Every. Day. Please spend some time with a family who deals with Type One before you ever make these same assertions to another family that you have made to me today."
That felt good. Even after two years since that visit, the burden of that guilt still stayed with me. It feels freeing to write down what I could have, and should have said. No one knows the depth of my love for my son other than me.
Until Next Time,
Much love, Reba