The words we use when talking about lows

WRITTEN BY: Renza Scibilia
I remember my first hypo. It was in the week or so following my diabetes diagnosis, and I was on the phone with a friend and I remember a feeling washing over me; an unfamiliar feeling.

I had just spent the first days of this new reality called diabetes reading, reading, reading whatever I could get my hands on. A lot of what I had learnt was about hypoglycaemia. I read about symptoms and signs and different categories of hypos, all packaged up neatly and tidily.

It took me only a short time to realise that diabetes is not neat or tidy. And hypoglycaemia is, perhaps, one of the messiest aspects of living with the condition.

In recent years, I have spent a lot of time thinking, talking and writing about how the way we communicate is important if we want to accurately portray diabetes. And this extends to the way we speak about hypoglycaemia. Most references divide hypos into three neat parcels: mild, moderate and severe. Sometimes other words are used, but they offer the same idea that hypos are easily categorised and, because of the words used in those classifications, that some lows are more important than others.

There is always a lot to be found about severe hypoglycaemia. That’s the one that we learn to fear and worry about; the one that is spoken about in hushed tones; the one that parents of kids with diabetes are terrified of. Actually, the one that terrifies a lot of us actually living with diabetes, especially at night-time, silent little mutterings said before we go to bed; sighs of relief in the morning.

In twenty-two years of diabetes, I’ve had one severe hypo. It was during the early weeks of a pregnancy. I woke up on the floor of my best friend’s apartment, a paramedic standing over me about to put in an IV line. I’d been walking around the park with my friend. I have no recollection of getting from the park, across the street, to her apartment. I don’t remember consuming the soft drink or juice, whose empty packagings were strewn around the floor next to me. And I have no memory of the moment I passed out.

Yes, it scared me, and yes, it made me want to do everything in my power to avoid another episode.

But it is the daily, and more common and frequent hypoglycaemia that has far more impact on my everyday life. And yet, because those lows are termed as ‘mild’, they are seen and treated as insignificant.

All hypoglycaemia needs attention. I believe that the focus on the severe – and the terminology itself – has done a disservice to people living with diabetes. It is usually only severe hypoglycaemia that is considered by regulators when assessing reimbursement for new drugs and technologies, or policy makers when determining who has access to those expensive technologies.

But it is those so-called mild lows that impact my life far, far more because they are frequent and often result in me spending a lot of time second guessing just what I am doing with my diabetes management. They mean that I may be running late for something as I had to treat before I could drive, or that I can’t run around after my kid when I want to because I need to guzzle a juice box. It can mean that I am not firing on all cylinders in an important work conversation because I am dealing with the slight mind-fuzz that comes after a low.

These are not mild things. And neither is how that leaves me feeling. Has the person I’ve kept waiting wondered if I am fully committed to the project we’re working on. Does my kid think I’m not engaged and interested in what they are doing? Have my colleagues written me off as not interested or incapable of understanding the work we were discussing? These things play on my mind, and they are not ‘mild’ at all.

Mild does not mean insignificant, and yet, that is often how they are considered. All lows can be debilitating. All lows leave can leave an impact on how we feel physically and emotionally. All lows can result in us feeling vulnerable or scared or out of control and carry some burden.

I think back to that first hypo. At the time I had no idea just how many hypos I would have to live through. Or how emotionally wrecked they could leave me. I had no idea that rather than the three ordered categories I had read about would blur into each other, and divide into a million other different ways to categorise what I was going through. But what I did learn from that moment was that hypos matter – whatever they look and feel like.

Educational content related to severe hypoglycemia is made possible with support from Lilly Diabetes (BAQSIMI), and editorial control rests solely on Beyond Type 1.

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It’s so true. It’s the daily, every few days or weekly ones that can be upsetting moments. Because hopefully we avoid that severe low. The moderate happens off and on for various miscalculations. Exercise variation causing comes to mind for me. The mild, those can be upsetting and happen more often, so it disrupts our everyday life a lot more.

For example for me. I planned on purple potatoes and a large salad for my major meal of the day. I prebolused, fixed my salad and cooked my potatoes. Perfect timing and open up my newly made salad dressing from 2 days ago and it was moldy! I make it all the time, I have no idea why it got moldy. But now I am faced with eat another already made dressing. or try to make one in a now time constraint situation. But I wanted the ranch I make, so I drank some OJ, ate a bunch of my cooked potatoes and made some new dressing. And of course had to take some extra insulin for the extra oj/low preventative. I couldn’t count on the potatoes alone as they were drowned in margarine which delay the carbs and I wasn’t sure that they would work in time, but I also just didn’t want to drink half a meals worth of OJ either.

A little thing, but it was upsetting, not anything major to worry about of course, but we can plan everything so nicely and it can easily be so disrupted. Whether it’s because you know you are going to be too low and have to stop and eat or you start to drop and have to deal with it, these small things just happen and half the time you don’t always know why.

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Yeah, I guess you guys (the author and Marie and Mila who shared the article) make a good point. I never thought about it before. These thoughts are causing me to re-evaluate things, so Thanks.

I want vegetables. But, I don’t want to engage in a complicated disinfection process (cleaning them outside before I bring them into the house or aging them in the car for days). So, I thought I would grow some.

I dig a lot of trenches and turn over a lot of topsoil. I can only do that a little without getting low. That is just the pattern that I am in. Its causing me to me moderately low for much of the day.

I’ll give this some thought.

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I am having one of those days where I have eaten my usual meals which are full of oatmeal, fruit, beans and quinoa, etc and I have taken very little insulin and I keep having lows. I have no idea why, but it is ok. I am sitting here recovering from a low now.

Since I have had type 1 for 61 yrs and am 69 now, this is just life for me. I have only had a severe low, when my husband has had to give me glucagon, twice in 50 yrs, and I still can tell when my glucose level is falling even when not wearing my CGM. I have been very fortunate.

Lows are only a mild problem for me.
If I got upset every time I was low, I would be upset way too often. They aren’t fun, but for me they are normal and they are ok.

My son learned so much from the fact that I had to deal with diabetes. He admired me for dealing with it and still does. When he developed his own even worse illness at a very young age, he dealt with it very well because he had seen me deal with mine. I am very thankful that he could learn so much from living with me and my diabetes.

I have never worried about people judging me because of my lows at home or at work because diabetes is just part of who I am. I except it and I find that most other people do too. I have never known a life, that I can remember, that is free of dealing with occasional lows.

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Please make this your profile pic meme, @Marie20, lol.
I had horrible veg meatballs for dinner, so I browsed the tofurkey website.
This guys is sooo cute!

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@Mila

Thank you for posting this entry from Renza. I agree with Renza that the language we use is important. So is what we talk about and what we don’t. When we minimize the effects of the less severe lows which pervade our lives, others don’t realize the stress we are under.

Now I know how to describe the feeling that comes during and after most of my insulin reactions:

Words can describe or confuse. This phrase describes the experience well. The fuzz is not insignificant.

“All lows can be debilitating. All lows leave can leave an impact on how we feel physically and emotionally. All lows can result in us feeling vulnerable or scared or out of control and carry some burden.”

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