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May 13 / Caro

Loss. Guilt

Whilst getting pregnant proved to be fairly easy in the end, it’s not necessarily all a walk in the park from there.

That Sunday evening wasn’t the first time I’d seen more than one pink line. A second pink line doesn’t always result in a baby nine months later. In fact, it really often doesn’t.

Some statistics suggest that as many as three quarters of fertilised eggs never actually make it. They don’t implant at all. Or they implant, only to be lost within hours or a day. For many women, it may just seem that their period is a little later than usual. For women with irregular periods, they may notice nothing at all. This all occurs before a home pregnancy test even turns positive. Once you’ve got that positive test, there is still a one in five chance of early pregnancy loss – that is a miscarriage occurring before 12 weeks gestation.

It seems that miscarriage rates have increased in recent years – everyone seems to know someone who has been affected by miscarriage. But it’s more likely that more miscarriages are known about now, thanks to very early pregnancy tests that can tell you very soon after implantation that you are pregnant – perhaps even days before you would even notice that your period was late. Previously women would not have been sure that they were pregnant, so could not be sure that bleeding after a delayed period was a miscarriage.

Why a miscarriage happens is usually a mystery. For some women it’s a sign of an underlying problem, or caused directly by another health issue. But in many cases, the cause is totally unknown. “Un-viability” is a phrase that is bandied around. Chromosomal abnormalities that are incompatible with continued fetal development. But even knowing these statistics, about how common miscarriage is, and even knowing that it’s often no one’s fault and that the pregnancy was not to be – couldn’t have developed further – doesn’t make miscarriage any easier to bear.

And for me, I can’t help but jump to the conclusion that diabetes may somehow be involved. The increased risks of a diabetic pregnancy – including miscarriage, still birth and birth defects – are drummed in to every woman with diabetes. It’s easy to direct the anger towards it. But the truth is, if diabetes were the cause, I would still really have only myself to blame, for not keeping the necessary control. My A1c at that time was 6%. I’d rarely seen a number above 9 in the preceding two months. I was micromanaging every aspect of the condition – a condition that attempts to defy micromanagement, and usually succeeds. But still I have a nagging doubt. There was that one night when I was so tired that CGM failed to rouse me. That was also the one night where something went awry and when I finally awoke, my blood sugar was over 20. And then there were all the lows. None of them serious enough to cause me to lose consciousness, but many of them prolonged over hours at a time.

The simple honest truth: I feel guilty.

Unsurprising really. Guilt is one of the emotions that is right up there in the top five of living with diabetes. There are very few other conditions where so much responsibility is put on the person themselves to keep things under control. Where our actions or the lack thereof, are under constant scrutiny not just from medical professionals but also friends, family and the public at large (those people not-so-affectionately known as “The Diabetes Police”). There is a constant suggestion of blame when things don’t go to plan. If we hadn’t eaten that, or drunk that, or if we’d taken more or less insulin, or even exercised differently, then things would have been different. Of course, we know that things aren’t that simple. You can do everything you should, put in all the effort demanded by this relentless condition and then the diabetes fairy comes along and laughs in our faces. Seemingly insignificant things like the weather, moods or whether the month contains the letter ‘R’ all influence our position relative to the tight line we try to maintain. But the continual judgement of others regardless of whether or not it is misplaced, coupled with the high standards we set ourselves and the inherent frustrations of being unable to maintain those standards at all times all leads to plenty of scope for guilt.

I’ve battled against diabetes guilt for much of my adult life. Working through my reactions to every less than ideal blood sugar, and every A1c that falls outside the tiny range that I strive for. Trying to deal with it logically and dispassionately. Identify the problem. Find a way to address it, and if feasible to reduce the chances of a recurrence. Then move on. Accept that I’m human. Accept the limitations of the insulins and technology we currently have. Accept that what other people think is largely irrelevant, and that unsolicited advice is just plain rude.

I’m not always successful. Usually my guilt peaks at the very same time as my most intense feelings of burnout. The  moments when it all just seems too hard to juggle the multiple balls in my life. When my control suffers because I can’t devote the energy it demands. When the numbers on my meter elicit rage, rather than problem-solving. I feel guilty for not being able to cope with this on every single day of the year. I feel guilty for not getting out the results I know that I can, because I’ve achieved them before. Irrational – yes, definitely. At other times I know it’s just the way it goes – it’s that diabetes fairy again – but in the pit of burnout it feels as though everything is my fault.

The flip side of the coin, though, is that sometimes the guilt is not misplaced. Like the times I kept the same infusion set in for a week straight. Or the times as a teenager when I deliberately omitted insulin. The times as a student when I definitely drank more alcohol than I should have. The time I forgot to collect a prescription and had to make five test strips last an entire weekend.

And what about this time?

It’s so hard, even now, to suppress that niggle of doubt that I could have done more. It’s one thing to feel guilt because we fear the consequences of poor control for ourselves – our own eyes, kidneys, nerves and heart – and feel afraid that we’ll only have ourselves to blame if things go wrong. But what about when the consequences of what you’ve done, or not done, influence someone who was completely innocent. What happens when you lose something indescribably precious and the fact that you didn’t do enough to keep the numbers under control might be the reason.

It’s incredibly difficult to move past.

I’m so determined that this time will be different. It serves as motivation to do absolutely all I can, no matter how hard. It also means holding a good deep breath. I’ve been holding it for a while. And I’m still afraid to let it go.

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3 Comments

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  1. Whitney / Dec 30 2014

    Thank you for this post. Its like reading my feelings about my diabetes, past and present. Thank you from the bottom of my heart.

    • Caro / Dec 31 2014

      I’m glad you’ve found it helpful – but obviously sorry in a way that you are able to identify. How good it would be if diabetes did not exist!

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