AIBU to think people should take medical conditions more seriously?

[Basketballerr]

A fair few members of my family and some friends of mine have diagnosed medical conditions that have dietary changes included as part of treatment but they just seem to completely ignore this alot of the time.
For example diabetics who still regularly eat sugar/drink alot of alcohol and are careless with checking blood sugar and taking their insulin.
Celiac disease but will regularly eat gluten and not accidentally, I've witnessed them eating leftover toast from the kids etc then saying oops I'll pay for that later.
Acid reflux (as part of a wider diagnosis) which causes terrible pain if they eat late or eat certain foods and they still regularly eat those foods.
High cholesterol and given a low cholesterol diet that is completely ignored.
High blood pressure and told to stop smoking/drinking.
You get the idea.
I am not saying it's easy and as a person who does not have any of these conditions I cannot sympathise to how it feels but I lived with a diabetic who nearly died on several occasions due to not caring about what they ate and not doing their insulin. I get it's their business but at the same time I worry about them.
AIBU to think things like this should be taken more seriously!?

I don’t think it’s necessarily a case of not taking it seriously but more of a mental block or denial. My BIL has unstable diabetes but has frequent and severe hypos due to his lifestyle. He does the bare minimum but I do believe that he probably feels like it already rules his life and he’s doing his best.

Things like hypertension are a bit different because they aren’t tangible risks- if you don’t control it you might have a stroke in 20 years. Very scary if you are the person who has a stroke but quite easy to tuck that away in the back of your mind.

I also thing doctors are wary of scaring patients and whilst giving information on risk they might give it in quite a sanitised form.

Yes you ABU.

It's probably, for most people, not that they don't care but it's really, really tough to stick to something restrictive every day of your life, no matter how self destructive it is if you don't follow 'the rules'.

I have a lifelong chronic condition. Thankfully it's not one that would kill me if I don't do anything about it but I imagine the mindset is the same.

I have been following medical advice for almost 60yrs now. There have been periods where I've found it really difficult, way too much time and trouble and very restrictive on my life in general. Sometimes I just don't want to do it. So I don't. And then I have to live with consequences of that.

People who don't have a condition or illness that needs constant managing have absolutely no idea of how exhausting, both mentally and physically it is. The emotional aspect of feeling upset, depressed or angry that you have this thing that means you can't live your life as you want, is far greater than most people realise.

Add to that the stress of other people thinking they know how you should, or how they would, manage it and it's easy to just say 'that's it, I'm not doing it for a bit'.

My dad has coeliacs, I remember my mum getting very annoyed at him early on after his diagnosis because he kept eating and drinking things with gluten in and then being very ill. Partly he'd forget to check, partly I think he was in denial. Given he was hospitalised before they found out he had coeliacs you'd think he'd have followed the diet more closely, but in practice that's a hard change to make.

It's very easy to say that when you have no experience of it, OP. I am currently under investigation for coeliac disease and lactose intolerance. I imagine it will be very, very hard to give up all those foods forever, if I need to.

My only experience of similar was when I had to eat an extreme low fat diet for 8 months while awaiting gallbladder surgery. That wasn't hard willpower-wise, because the alternative was immediate, excruciating, childbirth-level agony. When the damage is more subtle and long-term (even if potentially serious), it must ve much much harder to maintain the willpower 24/7.

Well yes of course but having a chronic illness sucks. Sometimes you just want to feel normal even if you do pay for it later.

To be honest even people who are healthy don’t always do what they’re supposed to - ie, taking risks, eating junk food, smoking, drinking etc.

I have chronic autoimmune conditions including lupus, Addison’s and asthma and sometimes I eat my own body weight in chocolate because quite frankly it’s the only thing that cheers me up...!

People who don't have a condition or illness that needs constant managing have absolutely no idea of how exhausting, both mentally and physically it is. The emotional aspect of feeling upset, depressed or angry that you have this thing that means you can't live your life as you want, is far greater than most people realise.

Exactly. I don't have that yet, and hopefully my test will be negative. But I don't see why it's not totally obvious to people what a long, depressing, tedious pressure this would be, and how hard it must be to face complying with restrictions for the rest of your life.

I think you have to let adults just get on with it and decide how much risk they want to take. Everyone is really different with this.

Easy for you to say it when you aren't in the position. Some of these conditions come with pretty major lifestyle changes and it is easy for people to slip up.

Stop being judgemental.

@nokidshere I really do try to see it from that perspective and I am well aware that by being somebody without these medical conditions it is easy to judge but I have watched somebody I love who is diabetic completely ignore their condition to the point they end up in hospital close to death which could have been avoided multiple times.

I also agree it's easy to dismiss these things if consequences may not happen for years, I work vaguely within the medical sector (but not a medical professional or anything) so I know that smoking is heavily linked to cancer and that somebody with high blood pressure/strong family history of heart disease is at risk of heart attacks etc. And I worry that something might happen to them and they should be doing what they can to prevent it.

Yes, YABU.

I have type 1 diabetes since the age of 11, twenty five years now.

It is RELENTLESS. You have no idea of how much work it is, how much it interferes with daily living. Humans aren't made for constant hypervigilance which is what it requires in a lot of cases, especially women in child bearing years.

Bluntly the NHS doesn't help because provision for diabetes is shit. Maybe if I'd had the right tools oh, about 15 years ago, I would have arrived faster at the place I am now. Which is far healthier and more balanced.

My blood work on multiple axes now is so good you couldn't tell I have diabetes. This is because I have access to the most advanced technology in the world available BUT it is ALSO constant hard work.

You have no idea how hard I work to get these results. All the broken nights, the constant analysing and trying to think three steps ahead, the constant factoring in of not only food and insulin and exercise but my emotional state, how cold/ hot it is, where I am in my menstrual cycle, if I have any pain, if I haven't had enough sleep, if I've had an adrenalin burst from running for a bus...the list goes on.

You have no idea how 'seriously' anyone living with chronic illness takes it and no idea how overwhelming it can be, which can then cause you to switch off at times.

Diabetes distress is well-known in medical literature, for example.

YABU.
I have a problem that means I have to avoid an entire food group but I'm ok with it in small amounts (and it's in everything). The people around me such as MIL nitpicking over what I eat is the worst part of the condition apart from accidentally eating something that actually makes me ill. Unless you're a GP or dietician you should wind your neck in, it's none of your business and you might not understand the problem properly (or the person with the problem might not have explained it to you in enough detail because they're sick of having to explain themselves).
In general, people would stick rigidly to their doctors' recommendations if the world was set up for them to do so without causing a huge fuss every time they wanted to put food in their mouth.
Unless you've LIVED having to check ingredients in the supermarket and having to assess menus for going out places for whether there is one thing on the menu you can safely eat, unless you've spent HOURS going from restaurant to restaurant looking for one that has something you can eat, then finally cracking and just going to the nearest, knowing full well you'll be ill the next day, you have no idea what you're talking about.

I was hospitalised for a few weeks recently and the pain was so awful I wish someone would have finished me off with the nearest heavy object. Whilst I'm on the waiting list for surgery to sort it out long term I cant drink alcohol, I haven't done and I wont but I really do fancy a glass of wine every now and again, I wont have one because i know what it feels like if the illness flares up again but I have to say that if I'd just been told what the risk was and told not to drink in case it triggers it then I would probably think, oh well I'll just have one, what's the worst that could happen.

I think until you are in th situation where the worst has happened the denial of something that you want is more of a hardship than the potential consequences iyswim.

@absentmindedwoman thank you for your honesty, I really dont mean to sound like it's easy to just take your insulin and get on with life. I have seen from my ex how hard it was to live with but he would regularly eat a family sized bar of chocolate for example and then not take his insulin because he couldn't be bothered. I'd know he was going to end up in hospital and didn't know if he'd survive every time.

I'm not trying to be judgemental I genuinely am worried sick about family members as I don't want them to suffer.

My medical condition is much improved by eating a low sugar, low fat, low carb (and no white rice, pasta, bread) diet but I actually want to live! What's the point of being alive if meal times are a miserable experience??? Even things like butternut squash or red peppers set my condition off due to sugar content so instead I take a daily pill and enjoy my life!

If you have never had dietary restrictions your are completely unreasonable to comment on this

I had 6 months on an ultra low fat diet while waiting for my gall bladder removal. It was shit - everything really nice (cheese, chocolate, cream, pastry, buttered toast, fish and chips...) gone from my diet.

The only thing that kept me on the diet was the knowledge that any cheating would lead to immediate and excruciatingly painful consequences.

I can well imagine that if the consequence had been more hidden (gradual furring of my arteries, capillaries dying off in one's feet due to uncontrolled diabetes) it would be incredibly hard not to slip up.

I have quite a few conditions and honestly I’ve found that people either don’t care or they don’t understand what it’s like as they don’t have it. I’ve had to do a low fibre diet for the last 5 years and also cut alcohol out. Until someone gets a condition you’ll never know what it’s like.

I have seen from my ex how hard it was to live with but he would regularly eat a family sized bar of chocolate for example and then not take his insulin because he couldn't be bothered. I'd know he was going to end up in hospital and didn't know if he'd survive every time.

You ex was not coping mentally with his diabetes, and it sounds like he had chronic high sugars, which have a very real effect on your mental state and ability to make decisions and take actions.

For example, studies show that children with type 1 diabetes have similar brain images to non-diabetic children with ADHD, affecting their executive function.

Depressingly, I'd be willing to bet that he was dismissed as just 'non compliant' by his diabetes team, with no real effort to support him and get to the root of the issue.

It's shit how few diabetes departments have a psychiatrist or therapist on the team, for example. Don't get me wrong - there are some brilliant diabetes teams and consultants in the NHS but so many are frankly not remotely good enough, and even the wonderful teams are hamstrung by lack of funding.

It is very hard to stick to a regimented diet with T1D. I did for a while, but when you spend all day avoiding the thing you really want for lunch because it spikes you BS a bit too much, only for something stressful to happen and you end up in the same scenario of correcting anyway it does make you wonder why you don't just have the thing you really want. I am to be good 90% of the time and have what I want the other 10% (with suitable medication adjustment), so I won't be perfect and I don't qualify for any clever tech to make it any better than correcting afterwards.

My experience of the treatment from the medical teams is very 'blood sugar by the book' and this totally ignores the fact they are dealing with a real life person. I have a number of mental health niggles and all stem from being treated as 'a diabetic' first and 'an individual' second with it taking over every decision. I'm thankful that I have supportive and experienced with T1D family and friends because if I was in the same position without that, or them just telling me to try harder, i'd have probably been off the rails with it long ago, rather than where I am today which is pretty fit and healthy in the grand scheme of things with 0 related hospital admissions.

The possibility of getting such conditions where lifestyle can be the main contributor (not applicable with all of course) and those who do not seek to minimise the possibility is something that is a good reason why I am not a medical professional. I would get angry with those who ignored advice which would help their condition improve or not get worse.

It is easier said than done with any chronic illness to follow the doctors advice to the letter (quality of life is I'd say more important than quantity and so advice vs living needs to be weighed up on an individual basis). However I'd also say that if the not following the doctors advice causes long term damage and affects quality of life I'd ask is it worth it?
I say this as someone who has multiple chronic health conditions. Also I have a friend who went blind after eating things they shouldn't have over along period of time and now regrets it.
My dc has health issues and is on a strict diet and tube fed at times. Definitely difficult for dc but the consequences are so severe that dc sticks to them rigidly (even in teen years) because they've come to realise the consequences aren't worth the pleasure. If the consequences were less pronounced/along way off I'm sure it would be harder to stick to.

Some people are not bothered about living a long life/doing everything possible to live as long as possible. They'd rather enjoy their sins e.g. cake, alcohol as those things make their lives more enjoyable. I don't blame them to be honest.

However I'd also say that if the not following the doctors advice causes long term damage and affects quality of life I'd ask is it worth it?
I say this as someone who has multiple chronic health conditions. Also I have a friend who went blind after eating things they shouldn't have over along period of time and now regrets it.

You present this like it's a simple, black and white issue. It is not though.

I'm going to make a wild assumption that your blind friend is diabetic. There seems to be an element of blaming your friend for their blindness, that really isn't fair or reasonable.

Do you know how common eating disorders or disordered eating is in diabetes? As in, a real actual mental health condition? About 25% of women and girls fit criteria for anorexia, bulimia or diabulimia.

Behaviours of disordered eating become entrenched in a clinic where you are taught to fixate on numbers and restrict food. All the things you work actively to discourage when treating non diabetic patients with eating disorders. But numbers and restricting have to, to a certain extent, become your obsessions when you have diabetes. So it is not shocking when things go tits up.

Then there are all of the folk without disordered eating, but with depression from diabetes distress.

Things may be improving slowly now but diabetic clinics used to heavily rely on shame and guilt as techniques to try to bring young diabetics into line - tools which don't work, and not surprisingly, compound the problems and make it all far worse.

Additionally - you talk about "following the doctor's advice" like it is a simple fix it and all will be well as long as you do this faithfully. That simply isn't true for diabetes. It is an incredibly minimised condition where a majority of doctors remain reluctant to fully address all the variables which affect blood sugars.

Exactly. You can just as easily apply this to people who don't (yet) have health conditions. Why on earth do people smoke, eat poor diets, do no exercise etc when they know that it makes them likely to get cancer or heart disease or die of a heart attack or a stroke? They don't even need to totally cut out particular foods in order to massively reduce those risks (unlike people with coeliac disease etc), and yet so many fail to improve their lifestyle!

as a person who does not have any of these conditions I cannot sympathise to how it feels

Exactly. You are judging without knowing.

Personal choice to stick to the rules of your condition, probably stay healthier but have a really restricted life, or at the other end ignore it and have a short life but a merry one. Bit like drinking/not drinking smoking/not smoking