Facing diabetes ignorance with pregnancy rage… – by Helen German
One of the most frustrating things about Type 1 diabetes is not the constant finger-pricking and testing of blood sugars; it’s not the injections or carb counting; and it’s not even the hypos or hypers. All of these we can handle; it’s just part of the package deal that is diabetes.
No, the most frustrating thing about diabetes is when you meet medical professionals that actually know very little about the condition, like to think they know it all and then feel the need to lecture you about it. I recently met with such a person when I went for my 31 week scan.
And I wanted to share this experience here.
Rule number one
The third trimester was challenging at the start, with the sudden insulin adjustments and trying to manage the sporadic high sugar levels as baby went through a growth spurt. But it eventually settled down and you learn to put it all aside and carry on. Just keep focusing on a new day and try not to dwell on yesterday’s blood sugars. Rule number one with Type 1 diabetes and pregnancy is to accept from the start that high blood sugars will happen. Why? Because there are just far too many variables and bio-chemical influences happening in your body for you to be able to manage them all. The key is how you react; test and take action. So long as you’re taking action against the high sugars and testing frequently, then you are managing what is essentially the toughest time for your diabetes.
So, I went for my 31 week scan. Hard to believe that we’ve reached 31 weeks already! When I look back to last July when I found out I was pregnant and had all those questions and fears and worries… And now the end is in sight. It’s been an incredible journey! And that’s rule number two: your body is doing an amazing, wonderful job. You are growing another little human being! Don’t forget this or lose sight of this. (I did unfortunately.) Remind yourself of this whenever your diabetes starts going a bit crazy – it’s because your body is awesome! And diabetes can’t handle it, but you can.
As I walked into the scan room, the first question the sonographer asks me is how long have I been diabetic for? I answer ten and a half years. Then she asks me how I was diagnosed. I tell her the story; how I had about three weeks of insatiable thirst, incessant weeing, extreme weight loss, endless tiredness and how the doctor sent me for a blood test and the rest they say is history; I was put straight onto injections. Her response was that I was ‘lucky’ the doctor sent me for a blood test at all, and then gave the poorest attempt at a sympathetic statement for the fact I’ve been on insulin ever since. Not that I was looking for any sympathy.
‘Why does your baby have a big belly?’
I laid down on the bed, bump at the ready for the scan, and she continued to quiz me about whether my diabetes is well-controlled. I brush aside the hatred for that word ‘control’ and explain how yes I am rather obsessive when it comes to my diabetes. I write everything down and the clinic downstairs know me as the ‘organised and colourful diabetic’ for all my highlighting! She says ‘good’ because that’s how I can best look after the baby. (Like I wasn’t aware of this before I even fell pregnant!) She says do I test frequently, and asks how many times a day do I test my blood sugars. I say it averages between fifteen to twenty times. She then begins the scan.
The next question she asks me is ‘why does your baby have a big belly?’ and then says ‘I thought you said your blood sugars were controlled? Obviously you’re lying to me.’
I was floored. I explain I don’t know why the baby has a big belly and ask her for the answer instead? She says it’s because I’m not controlling my diabetes. I disagreed and said yes I am; that I have had the odd few high sugars at various stages of the pregnancy, but that is to be expected with hormones and growth spurts. She then stops what she is doing and stares at me, shaking her head and says: ‘well if it was well-controlled then you wouldn’t have any high sugars at all. Do you do your insulin when you eat? You should give your insulin after you’ve eaten.’
Now at this point I feel pregnancy rage start to bubble. This woman firstly has no right to be interrogating me about my diabetes seeing as she is there to do a scan and is not qualified at all in diabetes management. Secondly, what she has just said is so wrong it’s actually an insult. Do I do my insulin when I eat? No. Of course I don’t, I just stuff my face and forget all about the fact my pancreas is dead and simply hope for the best. And then I should do my insulin after I’ve eaten? No. Actually I should count my carbs and give my insulin at least fifteen minutes before I sit down to eat.
I look at my husband in disbelief and he grimaces in acknowledgement that this woman is now in danger of me lecturing her…
My rage meter has swung to maximum
She then spins round on her chair and tells me to give her five minutes while she checks the measurements on the graph and she will confirm whether or not my baby does in fact have a big belly. She explains that if it does then that is my fault. She will blame me, it’s got nothing to do with the baby.
And now my rage meter has swung round to maximum. She’s not even 100% sure yet that my baby has a big belly, but has accused me of lying about my diabetes management and assured me that if it does have a large abdominal circumference then it is completely my fault.
I sit up and wipe the gel off my bump. I try to breathe to keep calm.
Then she says, ‘no, the measurements are fine. So you were lying, you’re diabetes is obviously well controlled.’ I stare at my husband in disbelief at everything this woman has said to me in the last ten minutes. He double checks and asks her that everything is fine with the baby. She says yes and hands our notes back to us, explaining that babies need to be between four or five pounds at this stage and ours is four and half. So it’s fine.
I grab my coat and bag and leave the room as quickly as I can, feeling too angry to confront her attitude and ignorance and inappropriate comments.
Why does this happen? Why do some medical professionals feel the need to make ignorant judgements about diabetes? And normally by pointing the finger at the diabetic! This does not help us cope with managing the condition. In fact, it makes us start to resent it completely, especially when you are doing everything you’re supposed to and then get told by some self-certified expert that it’s not good enough or that you’re clearly not controlling it.
Thankfully this sonographer saw me at 31 weeks. If she had been at any of the early scans, where my confidence in my ability to cope and manage the next nine months was a bit shaky, then who knows what the effect would’ve been! As it happens, I was just left feeling angry at the level of diabetes ignorance.
I had an appointment at the diabetes clinic straight after my scan and my nurse congratulated me on how well I’ve managed the fluctuating blood sugars and that it’s looking really good. My last HbA1c was 36, or 5.4% in old money. I guess I now just need to work on managing my rage against ignorant people!
After my insulin was increased between weeks 25 to 30 I started to have a few more hypos again, which surprised me as I thought my insulin needs would carry on increasing until baby was born. Instead I found I was making a few reductions to my basal rate and bolus ratios across the space of a few days. My nurse explained that it’s quite normal for the insulin needs to taper off in the final weeks. However, I’d read that reductions in insulin was actually a sign of placenta failure. I mentioned this to my nurse who explained that if the reductions are by large amounts (greater than 20% at a time over a few days), then yes they would need to do a few tests to ensure the placenta is still functioning at an optimum level.
But seeing as my reductions were very small, and I was still having frequent foetal movement with no sudden changes then everything is still progressing well.
My blood sugars have really settled down in the last week or two, which is just as well because the diabetes rollercoaster was exhausting when I was just heading into the third trimester. Now, with just over a month to go, I’m too busy dealing with breathlessness, restless sleep, and frequent weeing to be juggling highs and lows of diabetes too.
The countdown has officially begun…