Type 1 Diabetes, Wellbeing

Psychological Support for Type 1s – The Missing Link

January 19, 2016
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I’ve been pondering this for so long. It’s a biggie. The link between living life with type 1 diabetes 24/7/365, and the mind of the diabetic in question.

*adopts brace position*

As a diabetic, mental wellbeing is SO freaking pertinent. Vital. Crucial. Mind-blowingly important. And seriously overlooked.

Here’s the thing, as I’ve come to understand it, in my non-medical and non-verified experience:

Type 1 diabetes this is a condition measured by the physical; the black and white nature of numerical results. Our life revolves around the digits as we test and measure and count and dose. BUT it is a condition that could not be further from being black and white because it is driven and governed by hormones. Weird, emotional, invisible, incalculable hormones.

If it were as simple as working out our insulin to carb ratio, we’d all have perfect blood sugars all of the time, quicker than you can say Novorapid.

NEWSFLASH: this is impossible.

Even if you don’t drink, are eating 100% healthy, non-processed foods, living in cotton wool, never do anything sociable or out of routine and are exercising five-seven times a week, you will still get blood sugars below 4, and above 8. I’ve done most of that leg work. It’s cool and all, but chocolate is fun, and so is LIFE.

So why the jeff are we categorically and only measured by the numbers, all of the time, when clearly there’s so much more to it?

I had a HbA1c of 5.8 last year, below 7.0 for the first time since my pancreas quit on me 18 years previously. I was drinking, eating chocolate sometimes, and a slice of pizza here and there. (It’s since gone back up above 7 but hey, memories were made).

So what was this magical formula?

I’d connected/unearthed/paid attention to the missing link between the physical demands of having type 1 diabetes on my body and… *drumroll* my MIND. And more to the point, I’d done something about it. Yoga. Meditation. Self-respect. Self-care.

I didn’t even consciously clock that there WAS an emotional impact of living with the condition (although I was a living, breathing, at times absolute hurricane of an example) for over a decade, because no one encouraged me to be aware of it.

The light bulb went off when I was categorically drowning in the emotional toil, though.

It was, without quite realising it at the time, the reason I started this blog. I wrote back in 2010, on the first iteration of the ‘About’ page: Because in all the reading I’d done, there was nothing out there that told me about what living with this thing is like for a person who loves to live.

Huh.

I wanted to make sense of my own situation in my mind, AS WELL as addressing the numbers.

Our minds literally have control over our lives – they are our most powerful tool, yet they can be our biggest enemy. Thoughts are just that – thoughts. But we have a tendency to form patterns of behaviour because we think these thoughts more than once, and thus they become our reality. This is tough, and made immeasurably tougher when your reality also involves grappling with an exhausting, relentless and incurable condition.

My life is shit.

I’m a terrible diabetic.

I’m failing at this.

I will never be like my friends.

I honestly think that a sustained period of not ideal numbers on the blood sugar scale is a reflection, not the cause of a period of negative thoughts. Stress will get you because, as mentioned, it’s all about hormones, innit?

We constantly berate ourselves for not being good enough (because we’re measured by the numbers, and the numbers suggest we’re either right or wrong and nothing in between), yet if we were at least made aware of how dangerous (and more often than not untrue) those thoughts are that say we’re a terrible diabetic, it would be easier to maintain perspective, which keeps motivation higher and stress lower because you cannot fail if you’re trying, and the numbers will follow because you are giving it your best, and knowing that that is enough. There is no such thing as being awful at this – we are constantly learning, growing, evolving and adapting – to our mood, to stress, to the weather for god’s sake, and yet we are never offered this clarity.

So why then, despite all the amazing technological and medical advancements that we’re so lucky to have, is there such a big gap in the psychological support that’s so crucial to making all this kit and medicine work for us? I appreciate that there are huge, crippling demands on our incredible health service, and this is far from the only or most debilitating condition in the world. I know that this is now a *thing*; there are murmurs in professional circles, and discussions at conferences. But there must be a reason why our HbA1c levels are among the highest in Europe…

It’s no wonder the diabetes online community are so vocal, and peer-to-peer support has become such an important tool in self-management. Until the birth of the internet, we were all wading through this alone.

And it’s not that we’re drowning in it all of the time. I can go for days where I don’t see my condition as anything more than background noise, and I’m fine and healthy and living and happy and diabetes is just a thing that I have, that I manage.

But sometimes, as you crash around at 3am with a low blood sugar, struggling to make sense of your thoughts because you can’t really breathe or see, you wonder if you can do this.

But you just do. Because the numbers are screaming at you, and it’s the numbers that matter the most.

Is it?

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9 Comments

  • Reply Elaine January 19, 2016 at 11:51 pm

    Hi Jen – you are so right. It’s one of the things that I find most difficult about the yearly consultant visits – that there’s so much weighing and measuring – as if we’re prize dogs at Crufts. Never the winning dogs, but always in with a chance of doing better.

    I suppose mental wellbeing isn’t yet measurable in a 10 minute hospital appointment – unless they handed out some kind of horrible questionnaire with boxes to tick.

    I wish, wish, wish that our health service had some way of cherishing our mental health, as longterm inhabitants of the world of diabetes. I’m sure it would save the NHS money in the end, but I don’t know how NICE could ever monetise it.

    Interested to hear that we do worse than other European countries on diabetes. I have a leaflet on my fridge – picked it up in a Portuguese pharmacy – and it has a much jollier view of diabetes (I can scan it and send it if you like). There’s a cartoon of a cheery man striding along, accompanied by a seagull, doing the “walk every day, for at least 30 minutes at a time, or take other exercise, whichever kind of exercise you like most” recommendation. In the ‘food’ part it says you should eat greens and other vegetables at every meal and start lunch with vegetable soup (which is a wonderful, thick, fresh option in any Portuguese cafe – and they don’t even raise an eyebrow if that’s all you ask for, even though it only costs tuppence, or so). The leaflet says to drink at least, 1.5 litres of water a day. It has other recommendations and is far more day-to-day practical and optimistic than anything I’ve ever been given by the NHS. And it’s a free leaflet given out in pharmacies.

    What can we do to get mental well being on the agenda, do you think? I’m game. I think it’s something that will have to rise from within us, all the diabetes magicians. As you say, the NHS is too stretched right now to do anything that it doesn’t think will save it money.

    But I think that visits to consultants should be framed by congratulations on the year in between that we’ve spent living our lives to the full, without anything breaking or falling off, with a bit of strategic advice on finessing of blood sugar levels, if necessary. An assumption that we’re doing the best we can with our complicated human, hormonal bodies, rather than a disappointed sigh at our feckless foolishness when an HbA1c strays from the perfect.

    Sorry this is such a long comment – and I’ll end it by telling you a story that I heard on my last visit to the outpatients – be sitting down with no hot tea in your mouth when you read this next bit – apparently a young woman, in her 20s, had just been diagnosed as Type 1, recently, in Sussex. She was being shown how to take blood for blood sugar tests from her fingertips. The woman who was showing her said this: “You need to do your blood tests on your left hand, of course. You’ll be needing your right hand for Braille later.”

    We’ve got a long, long, long way to go.

    • Reply missjengrieves January 27, 2016 at 7:17 pm

      Hi Elaine,
      Thanks again for such valuable comments!! You have so much insight, it’s really nice to get your views.
      But CHRIST on that last comment for that poor newly diagnosed woman!!! What the hell!?! It’s a bit of a sad story if that’s thinking from within. And here we all are, living our lives outside of our hospital appointments 364 other days of the year and surviving, and in some cases thriving…
      The need for psychological support is definitely a point of tension as far as my limited knowledge goes. I don’t move in medical circles (far far from it) but it seems that specialists are very aware it’s an area that’s increasingly important with a condition where the management is as psychological as physical, but I get the impression that hands are tied at the moment, and any shift in thinking always takes so long to rise. I think you’re right in that it must come from within. I’ve often thought about doing a coaching qualification so I can give advice with some professional know how (as opposed to just wittering on on here!) but I feel that’s a drop in the ocean of the kind of programme that would be required to shift ‘failing’ HbA1cs/a different outlook in general, and I don’t know how that would be funded so that patients could access it without being left out of pocket.
      I think in the meantime we are all a lot more connected (and vocal) than ever before, and there are a lot of active HCPs on social media who are with us in these thinkings. Maybe it will take a revolutionary amongst us! :) Hope you are keeping well x

  • Reply Hannah Proctor January 29, 2016 at 8:36 am

    Hi Jen,

    I have come back to this post a few times since you’ve posted it. It’s a post i needed this morning as i woke up at 18 after over-correcting a midnight hypo. I felt gutted, instantly a failure and so upset that i hadnt got it right. Your post really does put things into perspective.

    I am big fan of the NHS (for obvious reasons!) But hopefully one day mental health will be at the top of the agenda for diabetics and we will get the support we deserve, im pretty sure those 10 minute appointments cause more psychological damage every time you attend one!!

    Until this happens at least we are lucky enough to have people like you who make us feel ok about it. You deserve some thanks, so thank you and keep being kind to yourself :)

    • Reply missjengrieves February 4, 2016 at 11:20 pm

      Hi Hannah,
      Thanks so much for getting in touch, I really appreciate you commenting and putting yourself out there. It’s definitely so easy to get down about the numbers when they go awry, especially if you’ve had a good run or are trying so hard. I think the awareness that this is all for our health/to stay alive puts so much pressure on us, that we forget how much energy it takes just to keep going. Added to the fact that currently there isn’t much support for just how much of a psychological impact this condition can have, it’s definitely easy to give ourselves a hard time.
      My biggest fall out is always overcorrecting a midnight hypo! I always feel like I just want to stop the shaking as quickly as possible, and being half asleep never helps the awareness of correction quantities!
      I’m glad you took some solace from this post; I’m sure I will need to come back to it and remember my own words when I’ve ‘messed up’!! Take care and thank you for such lovely words xx

      • Reply Helen - Type 1 February 28, 2016 at 6:45 pm

        Did you know that one of the side effects of persistent stress is higher levels of cortisol in the body, which in turn leads to high or yo-yoing blood sugar levels no matter how hard you try? Ever wondered why your blood sugar levels are so much easier to control when you’re on holiday somewhere warm and sunny than when you’re working? I always thought it was the warmer weather but the same thing happens when you relax fully at home…. So the moral of the story is not to stress about high blood sugar levels but relax and do something you enjoy/makes you feel better about yourself. Hope this helps. Its only taken me 20 years to learn it. :-)

        • Reply missjengrieves March 7, 2016 at 9:54 pm

          Hey Helen! I do indeed… having very much experienced this first hand! I actually think it is the single thing that has had the most negative impact on my blood sugars when I’m going through those stressful periods, aside from food. I don’t tend to dwell on my blood sugars but I think the psychological impact of living with type 1 day-to-day, plus the pressure many diabetics feel from their healthcare team if the numbers aren’t ‘good enough’ can cause some real problems. It’s a mental toil that shouldn’t be underestimated, particularly I think for young people who are facing a lot of other pressures. Thank you so much for reading and commenting, much appreciated! x

  • Reply Charlotte June 20, 2016 at 10:02 pm

    I’ve just stumbled across this post (slightly late!) and just wanted to say that I really think that you’ve hit the nail on the head—your point about periods of high numbers being a reflection of a period of negative thoughts, rather than the cause, is so accurate. I haven’t been in the type 1 club for very long, but diabetes is so much easier to get on with and control when everything else in life is ticking along okay. Maybe it’s just me, but I find that my ‘numbers’ are also very linked with self-esteem/self-worth. If, for example, I’m generally feeling a bit rubbish about myself it’s very hard to find the motivation to manage diabetes in the way that I know that I can do, similarly it is very easy for diabetes to become a ‘tool’ almost to punish myself when perhaps I don’t believe that I deserve to look after myself.

    Apologies for the rather long comment, but thanks again for a great post :)

    • Reply missjengrieves July 6, 2016 at 9:45 pm

      Hey Charlotte, not late at all! I hope this post still makes sense in a year or two as and when people may find it. Thank you SO much for commenting – I wholeheartedly agree!!!! You’re so right around self-esteem and self-worth, I really think us type 1s have such a knack for being very critical on ourselves. Once I allow myself some kindness and an awareness that I’m trying and that I’m doing a great job even if the numbers aren’t quite ‘perfect’, managing it day to day feels much less daunting. It took me many, many years to realise this so props to you for even being aware of this!! I’m still learning every day but being kind to myself generally – around my body, my career, my traits AND my diabetes really has been such a revelation for me. Thanks again so so much for reading xxx

  • Reply Lucy February 6, 2017 at 4:02 am

    Hi Jen!
    Thank you for this and for you writing in general. I’ve always thought it ironic that in a chronic, invasive, and idiosyncratic disease one’s psychology and outlook has the biggest impact on the numbers and data. And at the end of the day the psychology of chronic illness is so under-treated and under-cared for because it is such a high maintenance disease, medically (on it’s best day, merely inconvenient). I used to not check my blood sugar because I didn’t want to see the high number. I couldn’t separate judgement from the number, and the number from myself.
    But at the end of the day, diabetic or non-diabetic, the only real control over anything we have in life is the attitude we choose– the emotional re-appraisal, the choice of grit and grace and resilience when it would otherwise might be easier to avoid it.
    Anyway– thank you, thank you, thank you for your writing and reflection. I am so grateful for it!
    Lucy (Type 1, 19 years)

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