type 1 diabetes/ invisible illness documentary

As I have been told for many years, diabetes will never kill me but any one(or more) of the things that it can bring on will. I think people are quite ignorant on the affects that diabetes can have on the body and the amount of other things we have to be aware of. It is a very complex condition.

Personally I think that all the other conditions that can be brought on by diabetes needs to strongly highlighted. The need for good control should also be paramount. There are so many conditions that we cannot see happening to our bodies and can be unaware of them until it is too late. I have suffered from depression on a number of occasions. Apart from that I am relatively healthy but I do put that down to good control and looking after myself.

I have been a diabetic for 42 years (since the age of 16) and have an insulin pump.

Good luck with the documentary.

Ann

Way to go! I would love to hear how we are not educated to eat low carb. This helps glucose control immensely.

I think you would produce the best product if you kept it close to home and stick to T1D.

I would like to see a movie about T1D that is NOT depressing, and does not make me feel like everyone who sees it will view me a helpless disabled person who spends every day struggling to survive, like most media makes it seem. Yes its a disease, but I am probably still healthier, and more physically capable then most smokers, or alcoholics, or those who are overweight or eat poorly.. Id say even with this disease many of us are still right in the middle of the pack in terms of quality and length of life.

I have found that everything i have read has focused on all the complications, the disease, the side effects, the mental problems, and very little on the fact that we are still humans, with dreams, and goals, and many of us spend a lot our time NOT struggling or sick or whatever else.

I would really like to see a critique of the health care provided by doctors and nurses. How many doctors and nurses don't seem to keep up with new research on T1Ds and have not updated their treatment plans in decades, and as a result its the cause of many diabetics complications. I have found many doctors are lazy and just say "do what you can, if 10 is the best you can do then stick to that" rather then pushing people to lower blood sugars and eat better.

They spend so much of their time trying to scare people by complications that they do nothing to motivate us to actually achieve lower sugars. We all have the potential to make it through this, but without the tools and knowledge we struggle. I would then say our struggle is not that caused by the disease itself, but a struggle to obtain the proper knowledge and motivation to be able to handle it.

I would love to see that in a film!

/rant

Addressing some of the common misconceptions people have; "You can't eat sugar?!?", "But you're not fat!", "You can't eat that!" this type of thing, which I'm sure everyone has heard at least once. Also the classic "Oh it could be worse, you could have cancer.." -_- Which just shows huge amounts of ignorance on their part. Finally as Diamattic said, the bad advice given by doctors and nurses, I made a post about that in this thread: http://www.diabetes.co.uk/forum/thr...lines-for-treatment-of-type-1-diabetes.82748/

I'd .like to see it made clear that insulin isn't a cure, and that managing diabetes is hard work and something dynamic. I think most people assume it's a case of "take this amount of insulin a day for the rest of your life" and you're sorted. They don't realise controlling blood sugar is an ongoing process. So I'd like to see a busy diabetic day with plenty of blood tests, allowing for exercise, carb counting, etc etc.

I'd also like to see adults withnType 1 and people who,were diagnosed as adults. So many people seem to think it's something only children get.

I think it would be interesting to see how each generation copes with type 1, from children who are learning and adapting, teens who are trying to be 'normal' and often rebelling against it, a 20 year old, 30 year old etc. I think throughout a diabetics life there are so many different mind sets and scenarios with managing the condition that it would be interesting to see how different people cope. Also agree with the above about what we are taught by the nhs vs what really does help a type 1 become an expert, what I've been told conflicts greatly with how I can best manage my type 1.. Bernstein has taught me much more than anything else.

Would be fascinated to see your finished work, good luck

hollyslot said:

This academic year, i'm going to be producing a documentary about type 1 diabetes, OR invisible illness OR the effect t1d has on mental health
I just wanted to ask, what would you like to see in a documentary like this? eg what would you find interesting?
(and which one do you think would be best?)
i obviously know most about T1D than any other "invisible illness" as that's what i have! but I have also had a long history of anorexia (although i'm much better now at a healthy weight etc) which im sure was very linked to the stress of having T1D.
Any opinions would be appreciated!
Thanks x

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A small cross section of upbeat engaging Ds giving the science & a concise outline of what diabetes entails. With no silly rants.

...& a decent pumping sound track! (Please no piano with the sustain pedal weighed down in a minor key.)

azure said:

I'd .like to see it made clear that insulin isn't a cure, and that managing diabetes is hard work and something dynamic. I think most people assume it's a case of "take this amount of insulin a day for the rest of your life" and you're sorted. They don't realise controlling blood sugar is an ongoing process. So I'd like to see a busy diabetic day with plenty of blood tests, allowing for exercise, carb counting, etc etc.

I'd also like to see adults withnType 1 and people who,were diagnosed as adults. So many people seem to think it's something only children get.

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OMG yes.. this is a huge frustration i have had. Pretty much everyone i know thinks now that I have diabetes i just take a single insulin shot before a meal and then i can eat whatever i want without consequence, and everything is fine.

One of my friends actually got in an argument with me because he said that his Tinnitus was worse my diabetes because his disease "actually affects his day to day life" and "diabetes wont affect me "unless i don't take my insulin" I had to walk away because i was about to punch him in the face.

People think we can't feel the change in blood sugars and we TOTALLY CAN. I am constantly feeling my BG change all day, every day. it certainly affects my day to day life. Especially highs and lows. There is maybe 4 hours total in my days where i don't feel my BG because they are stable and at a good number, the rest of the day they are either falling or raising, although still in a good range i can totally feel the fall/raise.

@Diamattic, you should have punched him in the face.

I have a T1D child and had gestation diabetes- could totally feel the BG changed and it is a bad feeling to be high or low. Sorry you went thru this!!

Definitely the amount of different things that can affect your blood sugar levels besides just what you eat, and also that what works for one diabetic may not work for another.

The amount of things we as diabetics have to think of as we go through the day, and the ways it may (or may not) affect people mentally, ie some people manage fantastically, some rebel, some give up, some obsess over it, some take it as a reason to push themselves a bit more to live life to the full and maybe do things they wouldn't have done pre-diagnosis...

And of course, as mentioned, being T1 does NOT mean we can't have sugar

Something that stands out for me is the resilience of diabetics to not let the condition rule their lives, even though it probably does at times. The willingness to improve control through testing again and again, trying different ways of eating, to do spectacular sporting achievements and most of all the mental resilience to resist naughty foods when everyone else around them in stuffing themselves and develop a greater understanding of the condition through trial and error.

teacher123 said:

Something that stands out for me is the resilience of diabetics to not let the condition rule their lives, even though it probably does at times. The willingness to improve control through testing again and again, trying different ways of eating, to do spectacular sporting achievements and most of all the mental resilience to resist naughty foods when everyone else around them in stuffing themselves and develop a greater understanding of the condition through trial and error.

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Talking of sporting achievements, this guy has to be right up there competing in several Iron Man races:

Would love to see some kind of film on type one. I got diagnosed last year at the age of 40 after a hip operation. Nearly died intensive care etc but getting there now. Only problem I'm registered disabled with back/hip problems and now moving to other joints can't or they won't do steroid injections anymore because of my diabetes so now struggling with more pain and type1

The idea of a positive upbeat narrative that other poster's have suggested, definitely resonates with me. Way too much negativity and morbidness in the diabetes documentaries I have seen.

Also, showing that Diabetics can achieve whatever they want in life (unfortunately we can't be astronauts or Deep Sea Divers - I was slightly distraught when I discovered this at the age of 10)

I think an overarching theme of the tenacity and determination diabetics possess in the face of this adversity, BUT we still remain hopeful and positive (ok, we have blips) would be excellent.

In closing; I feel as though non diabetics either look at us Indifferently (through Ignorance) or feel sorry for us - SO Annoying. With a positive theme and demonstrating the unrelenting battle diabetics face, hopefully it can teach people to EMPATHISE, which I'll glady take.

I would like to see some positiveness about T1 too.
Only because it taught me so much..
1) to be nicer to people (or try);
2) to volunteer as a PPG person to hive something back to NHS after their good care for at least 30 years so far;
3) to be strong enough not to be determined by my diabetes- (except my mother who has always seen me as her diabetic daughter... Not just her daughter.
4) to have actually watched my health and taken an interest in it- which most people don't give two hoots about unless they get ill later in life.

I am positive that I would have been a worse,neglectful, over eating, unhealthy person if it hadn't have been for my diabetes.

So I would love to see some positives included as I think this could assist people to see that its not all bad, doom n gloom!!

I definitely agree that it should be a positive approach to T1. What about a concise history of the way treatment has changed since the discovery of insulin? I remember (in 1964) when I was diagnosed, waiting 3 hours for a blood test result, which could only be done at the hospital. By the time the result came through blood sugar had changed completely, but future insulin doses were increased / decreased accordingly. How lucky I feel now to be able to do an instant test with a sensor and reader. So many advances in treatment have made my life easier in the last 51 years and I am grateful for that. I have a good team of medics at my hospital who have supported me along the way.i have had a pump since2009, another bonus! Since 1964, I survived, became a teacher, married, had children, started my own business, was widowed, have grandchildren. Oh and I have Type 1 Diabetes!!

I think that as a nurse for 30+ years and Diabetic 49 years. Employers need to be be aware of varying hypo awareness/ symptoms. Side effects can also vary some people who have problems are managing their diabetes well. I recall one Diabetic stating on Daphne course that he had problem with is his eyes. However his brother also diabetic smokes eats anything and his eyes etc are fine. I believe side effects should be possible consequences not inevitable . It is a healthy way to live with good consequences for everyone with/without diabetes.

Itoohave a chequered history of both anorexi and type 1 diabetes. I'd love to see information on how healthcare professionals and carers work or not, to help manage multiple hidden and complex conditions and the domino effect it has on the patient.

I also think themes of illness behaviour and identity are important. I've been told I'm practically a write off, and also that I'm not sick enough because the Dr couldn't see anything wrong with me at first glance! An intensive care stay two days later for DKA sort of prices them wrong lol!