The real cost of living in denial

[Juicyj]

I recently attended my annual hospital diabetes review, the girl before me was wheeled into her apt having had her foot amputated quite recently, I saw the consultant afterwards who actually looked relieved that I was managing my t1, didn’t have any questions and was happy to see him the following year, he mentioned about helping him with a buddy system to work with those who aren’t coping well and of course I said i’d be happy to help. He felt that it would work as people like her would be fine talking to another t1 but as a consultant he couldn’t get the message through to her about the importance of t1 control and only another t1 could do that.

However if a t1 is in clear denial and even after having lost a foot is still not managing their t1 as well as they could, would another t1 really help ? I am not convinced because I don’t think I could help change her mindset, yes I can show her that as a t1 we can manage it and live a ‘normal’ life however changing someone’s attitude to their condition runs a lot deeper than that, I have made sacrifices and changed my lifestyle but is anyone willing to do that and I have had to change my mindset too, so to stop agonising over numbers and getting it wrong daily, I take each day as it comes now and don’t sweat the small stuff, I know I am equipped to cope and there’s a financial sacrifice i’ve made too and not everyone with t1 can afford it.

I read a lot of comments from concerned parents/partners/children about helping someone with t1 who is in clear denial, but what really is the best way to help someone like this ?

Putting this out there because of everything I have ever seen this is the one aspect of t1 management that really needs more focus and we do need to do more to help support those who really need it, thoughts welcome.

 

[LooperCat]

I met a lovely T1 lady on a jewellery stall at a local market a couple of weeks ago - I was there in my role as a CFR - and my colleague introduced us. Turns out she is exactly where I was a couple of years ago, so I’m trying to be the best buddy I can, she’s here now too. We talk regularly on FB messenger and in meatspace.

@Simmo76

 

[Scott-C]

There's no easy answer to this. Some people just have destructive personalities. Look at Amy Winehouse - incredibly talented singer, millions in the bank, still abused drugs and died of alcohol poisoning.

Those extreme cases aside, yes, I do think that talking to other T1s can help, because we live it.

I did DAFNE about 3 yrs ago, range of participants, some recently dx'd, others a few decades in.

One youth, about 19, was only there, "because my mum made me", levels were all over the shop, high twenties, didn't care, it was too much hassle, perfect candidate for serious complications in a few years time.

The encouraging thing, though, was that by the end of the week, there was a total turnaround in her approach. I think it was a combination of the formal parts of the course, along with the older hands being quite frank with her about getting her act together, and the encouragement of a woman who was trying to tighten up her levels as she was trying for a baby. By the end of the week, the youth was asking all sorts of questions about libre and pumps - total turnaround compared to how she came into it.

 

[kitedoc]

I think most doctors learn by example in their medical course and through hospital terms etc so the idea of one TID with lived experience having connection with one who is perhaps more juniour and struggling a bit makes good sense to them.
There is still a way to go for full ntegration of thee partnerships between community, those consumers with lived experience to best ensure health guidelines, support networks and treatment options as well as support and encouragemnet, buddy systems are better developed.
And there are other organisations which i shall not name here whose new members or one's whose condition had lapsed, have a support person, buddy or sponsor.
Or there is a social groups with same age or others with varying age where support can be really helpful for TIDs. i belong to 2 such facebook groups in Adelaide.
And the location of buddy support can be in a city, town, or regional or rural.
The most advanced and seriously affected persons of course deserve first attention, but we also perhaps need HCPs to be more proactive in trying to refer their struggling TIDs early, before the inevitable sets in.
There is also the fact that from national surveys and collected data that many TIDs in first world countries in USA, UK, Australia etc are overweight and not well controlled ( if HBAIC is used as a rough measure) . Worse in fact that some years ago despite increase use of cgms, and to some extent insulin pumps.https://doi.10.1007/s11892-017-0918-8
Does that mean that these TIDs are not following their treatment properly? And/or is there a flaw in the actual treatment regimes or the way they are taught and thus the up to dateness of knowledge and best practice.
There may be a role for diabetes buddy system, help and example from supportive, successful TIDs in theses scenarios to assist along with other measures to improve the lot of TIDs and reduce the long and short-term consequences.

 

[Deleted Account]

Everyone is challenged by type 1 diabetes. Some find it easier than others. This may be because of the age they were diagnosed, because they have a perchant for numbers, because they have support around them, because they are more likely to be willing to make sacrifices.
When I was diagnosed, there was a woman I worked with who spoke to me, explained she too had type 1 and, if I had any questions, she would be happy to help. It was lovely for her to make the offer but I never took her up on it. This is because her personality is so different to mine. She manages her diabetes by being entirely in control - eats the same every day, goes on the same run every day, never holidaying outside the uk because she doesn’t know the food, ... To have her as a buddy would have made me very angry about diabetes and would probably made me rebel .. or prove diabetes management does not have to be so regimented.
I was very lucky when first diagnosed to have a dsn who recognised my personality and gave me the tools I needed for my life. I think it is partially the responsibility of the dsn to understand what the person needs mentally as well as physically. This may be pairing with a like-minded experienced person with type 1, it may be counselling, it may be to be left alone.

When I went on my DAFNE course, there was a mother and son. Both had type 1. Both were old enough to look after themselves. Mother had some feet issues. 20 year old son had lost sight in one eye due to retinopathy, was taking medication for kidney problems and still didn’t take insulin out with him when he was with his mates for the day. He said he wanted to do better but didn’t want to change his life. He wanted a pump because he thought that would do everything for him and was very disappointed to learn he would have to carb count. On the plus side, he always went to his appointments but that was because he would take the rest of the day off work (and still get paid) to go drinking with his unemployed mates. I am not sure if the course made any difference to him. I am pretty sure he only went because his mother was there.

 

[LooperCat]

When I was diagnosed, I was helped enormously by one of the guys in my motorcycle club, who’d had it since he was a child. He was still using syringes and I was on the (the the time) new pens. He showed me that I could still ride my bike, travel all over the world on it (and off it) and LIVE. Sadly he was murdered by his wife a few years ago, and I really miss him

 

[NicoleC1971]

You sound as if you really want to help but it is sensible to be wary and manage your own expectations of how much you can help anybody do anything they've patently really struggled to do.
I don't think you can help by simply telling people what you do unless they ask of course. I'd say it is handy just to be around someone who gets what it is like to live with type 1. You can set a good example and inspire someone but they have to trust you first so being a good and non judgmental listener would work better than either the anxious parent or target focused consultant.that this person has likely experienced.
I think if someone is thinking about making a change then they will be open to meeting another type 1 . If someone doesn't take you up on the buddy offer then it is likely to mean they are not ready and there is nothing that you, a parent, dsn or consultant can do about that if they are an an otherwise healthy adult. Some people do take longer to grow up. I think it took me until my first pregnancy and I still hate the idea of obsessing over carbs and insulin ratios so there is always that tension between doing what you want to do and doing what you need to do whether you are 17 or 48!

 

[LooperCat]

I’ve always made a point of being very open about my diabetes at the schools I’ve worked in recently, my Libre+MiaoMiao is often visible, as is my RileyLink, dog tags and bright red medic alert thing on a bangle. I test at my desk, or do a bolus. Regularly have my Nightscout on my computer screen - and I’ve had some great conversations with T1 kids about my life, management and tech. They’ve usually (hopefully) ended up being a little more optimistic about their own future.

 

[ert]

Heartbreaking. Truely heartbreaking.

 

[Dr Snoddy]

Buddy or counselling two very different things but equally potentially beneficial.

It will be interesting, if it was me I would try and meet the person somewhere on neutral ground and hopefully without a parent or guardian, simply because as you ask questions, you might find the parent/guardian answering which can make things tricky and potentially make the person more withdrawn.

Hope you manage to help the person, seems such a waste of a young life, but who knows what is going on in the background.

Good luck and take care.

Depending on the age of the young person, I would be wary about meeting them without the express permission of a parent or guardian, preferably in writing. In this day and age both young person and buddy need to safeguard themselves.

 

[becca59]

When I was diagnosed, I was helped enormously by one of the guys in my motorcycle club, who’d had it since he was a child. He was still using syringes and I was on the (the the time) new pens. He showed me that I could still ride my bike, travel all over the world on it (and off it) and LIVE. Sadly he was murdered by his wife a few years ago, and I really miss him

Oh my goodness very sad!

 

[MeiChanski]

I feel it is a difficult topic to discuss because I was once a kid in denial. It is heartbreaking to hear, read & watch the people you love go through it. My dad blamed me for it, my adult self thought it was his way of expressing anger but child me rebelled hard because I didn’t like to be blamed for something I didn’t cause. My mum was in tears from the day I was diagnosed up until I was in hospital multiple times. She was trying to handle her business whilst looking after my brothers and myself. If I’m honest I was quite lonely, through primary school to secondary school I was the only type 1 and I got spiteful comments for injecting. I am quite resentful of my team at the time, it took them 3-4 years to say mixtard 30 wasn’t working (My mum used actrapid back then to correct) then change me over to basal/bolus regime. By then I had so many infections, what the boys in school would call ugly. Counselling in school wasn’t of much help because they didn’t understand long term health conditions like they do now.

However things are changing, I wish diabetes team had more to help those in denial. I remember I was told constantly by my team to take insulin but never addressed mental health side of things. I guess I was expecting more because my dsn at the time was a type 1 as well.

On the other hand, providing tools could go either way. As we previously discussed they can either be committed or not scan the libre or scan and ignore the graph. There needs to be some kind of balancing act.

I’ve never met a younger person with type 1 but I do like the idea of discussing it with them. Possibly like a group educational program so their parents can tag along. Like an open group discussion. It’s nice to hear that we are not alone.

 

[becca59]

So lucky that when my diagnosis came I had witnessed my younger brother coping for years. So admired his resilience and determination, even with many events in his life that would have thrown anyone without Type 1. Also had a family supportive and onboard. Was able to take it in my stride and accept it. Plus being at the older end of the spectrum I’m aware mortality is much closer on the horizon, not something too far into the future to envisage. I know I am not indestructible. My aching bones after 24 hours with a 2 year old remind me of that.
Plus as @Scott-C says I’m afraid no matter what you do, some people are on self destruct.

 

[Alison54321]

If you're happy to give it a go it's worth a try, but you can't really know what someone needs to make them change the way they manage their diabetes.

I'm almost a complete control freak with my diabetes now, but I wasn't in the past, I don't know what made me change. I think I began to think my luck would run out, so I'd better help it out a bit. I think @Scott-C is right, though, that some people do have quite destructive personalities, and in that situation there really isn't much you can do. But for others it might be less complicated, and they just need something to motivate them, and you might be able to find what that is.

Sounds like it's worth a try though, if you're happy to do it.

 

[MeiChanski]

I agree there isn't a real easy answer to denial. It is very difficult to persuade someone going through dark times, the demon holds a dominant side of those thoughts and it likes to feed off it. High BG, denial, self hate and self destruction is fuelling the dark thoughts. If we turn to diabetes, telling the person to inject it, look after yourself and start testing, it will break the cycle but it's that process of getting them to that point. How do we get them to that point? We can provide them all the help we can, it is sometimes up to that person to take in that advice and help themselves. Self love is hard when you hate yourself.
It is true to some extent that if you want something in life and you need good diabetic hba1c, you'll do it. For me, because of my infections I couldn't get orthodontic treatment and my dental team kept highlighting that they were doing all they can to minimise bacteria, but the diabetes needs to be managed better. So I did, I think my hba1c was at that time 6.9%. I got braces at 18 and it wasn't the prettiest time for dental treatment, but it did help with keeping teeth clean compared to overlapping teeth. It'll be a similar situation to those who want to have children, intimacy, treatments etc.

 

[Fairygodmother]

Like you @Juicyj, I’ve seen people at the clinic who are suffering the rewards of bad control. I don’t know if it’s all because of denial as some cases seem to have occurred through lack of knowledge. There is one experience, though, that stands out: a young girl arrived with an adult and she was clearly rebellious and maybe disturbed. I have no idea what her blood sugars were at the time. Gradually the story emerged. She’d had a hypo at school, again. Her mother sent her in each day with a carb counted packed lunch. She had permission to test and eat in class if she needed to. However, she often failed to and frequently left parts of her lunch uneaten. She admitted she did this as if she was setting up a challenge.
I wouldn’t know how to have begun with her even though I really wanted to ask her if she wanted more hugs, disliked having food she couldn’t choose, dislikes being ‘different’, hated being T1, hated authority, and really just wanted to be free of it all. It was also apparent that emergency visits to the clinic were frequent as the school and her parents didn’t know how to break the cycle.
I wish now that I’d struck up a conversation even though she was sounding off and kicking the seat. I wish I’d known more about the situation but I feared I’d make it all worse if I tried to.
I think a buddy system would work if the buddy was chosen because they fitted the person they buddies up with, and if they were resilient enough to survive any knockbacks. I also agree that in the case of younger T1s it would have to be very carefully arranged within the scope of the child protection legislation.
In my own case, even though I was older (20) when diagnosed, it would have been fantastic to have a more knowledgable person to figuratively hold my hand.
I hope the young girl I saw that day has begun to thrive but I fear that there are too many T1 dangers she could have been hurt by.

 

[Scott-C]

One of the things which is coming through from these stories is just how hard the unpredictability of T1 is and how that sometimes manifests as, "it's not playing by the rules, so why should I?"

I know I waffle on a bit about cgm, and it's obviously nowhere near a fix for everything, but I reckon that if docs were more liberal with libre prescription, there would be fewer instances of burn out.

Letting people see how bg is moving so they can steer it ahead of bad stuff happening takes a lot of the unpredictability out of it.

Pretty much all the papers on libre use in T1 communities show improved distress scores.

 

[LooperCat]

This article popped up on my FB timeline just now - I’m going to start a new thread about it but it’s pertinent to this thread too.

http://thegirlsguidetodiabetes.com/2019/07/24/diabetes-the-great-provocateur-can-make-you-better/