Help, please, if you have Type I Diabetes or Epilepsy

So I usually ask these questions when I’m writing a character with a medical condition that I do not have myself. Even the most extensive research does not come close to what it is actually like to have a condition and I am very passionate about representing things properly, so if you wouldn’t mind taking a minute or two to answer these questions, that would be amazing.

  1. What is something that books/media commonly get wrong about your medical condition?

  2. Is there an aspect of your condition that you would really love to see represented? It might be something especially difficult or just a little thing that you don’t see very often in media (e.g. hypos at night, carb counting, exhaustion after seizures, etc).

(PS. my epileptic character has tonic-clonic seizures and absences, but don’t worry if yours are different. It’s still helpful)

Thank you so much!

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I’m type 1 diabetic, so I can answer based on my condition. Just bear in mind everyone with type 1 is different, and it affects people differently. Especially when it comes to low blood sugar symptoms and hyper (high) blood sugar symptoms.

What is something that books/media commonly get wrong about your medical condition? The biggest one in the UK is that type 1 and type 2 are the same thing, and that people with type 1 diabetes HAVE to be fat/obese and don’t look after themselves.
In fact, type 1 diabetes is an autoimmune disease. It can happen at any time, to any one of any size or age. I mean, I am fat but I was slimmer when I was diagnosed (pregnancy, thanks a lot! lol). Type 1 is absolutely NOT THE SAME as type 2.
Hell, even skinny people can get type 2. Type 2 is a type of diabetes that means you’re just resistant to insulin - I have a little bit of type 2 as well :smiley: but that’s not related to my weight - it’s because I also have gynaelogical issues.

Is there an aspect of your condition that you would really love to see represented? It might be something especially difficult or just a little thing that you don’t see very often in media (e.g. hypos at night, carb counting, exhaustion after seizures, etc)
Hmmm, I’m not sure. General exposure.
Like I was a teenager when I was diagnosed and I was absolutely petrified of say going out in public and testing my blood sugars and injecting. I would get SO MANY glares from people who have no idea, and probably think I’m shooting up drugs. I have had people go “you dirty druggie” in public while I’m just injecting because my sugar is high or whatever.
I’m confident in myself now. But it’s a big thing to overcome. Maybe more exposure of day to day diabetic things needs to happen.
People are quick to go “oh diabetes” but I dont think they actually know what it means.
My husband, when I met him and told him, thought I was terminal and would die because of it (I mean, I could if I don’t look after myself) but he had no idea and he got scared when I showed him my injection and blood testing kit.

Anyway, I hope that helps. If you want any more insight, let me know :smiley:

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Thank you so much! That’s really helpful. It’s horrible that they’d have a go at you for injecting when you’re literally just trying to keep yourself alive. I can see that more exposure would definitely help with that and with the misinformation about types, prognosis, etc. Again, thank you :slight_smile:

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No problem!!

Yeah I think more general exposure would definitely help. A lot of people I see on forums and facebook etc still struggle with that concept of life. I’m just lucky I learnt to get over it, and sometimes I yell back but it’s a real ‘thing’.

Glad to help :smiley:

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Epileptic here. 32YO.
Epilepsy can actually change a lot and the triggers can vary tremendously. Epilepsy is just a trigger-induced wire short-out of the brain, and depending on where the misfiring is, the conditions changes. it can also change and move over time. TV shows generally show every epileptic having traditional seizures, and usually some kind of medicine that kills it in moments, when in reality the meds are usually preventative, and skipping pills can cause delays hours or days later, and often just dont work well at all, or reduce the severity.

When i was born to the age of 2, i had traditional seizures, and they just when away at 3. for most of childhood i just had moments where i would zone-out and be fine, and when i was 13 or 14 i took a nasty fall and it came back. then for years i had partial-complex where i would be mid-sentance and just freeze up, like someone hit pause, and a minute later i had no idea where i was or how i got there, effectively wiping my memory back to when i last went to sleep. So to me i just woke up mid-day at my grandma’s house with no idea what happened. it never comes back. after years of medication the seizures stopped, came back as short bursts of left-size paralysis and seemed to be trigger by anxiety. then when i went to college it moved to the optic nerve.

Now when i have one, usually once a week in summer, once a month or so winter, i just have a migraine and suddenly go blind. takes about ten minutes to go from “something doesn’t look right…am i having one?” to 100 percent whiteout and a splitting headache. Epilepsy triggers and reactions can change with time, come and go in frequency and remission, and depending on the triggers and warnings, you can even drive, though i cant drive on highways because there’s no time to find an exit before going blind and i could be in really deep Shart.

triggers can be flashing lights, roller coasters, stress, bright lights, skipping meals, weather or seasons. For example, i always rode roller coasters without problems, and as long as i look away and dont stare at flashing lights, i’m fine, so there’s no “Surprize! Instant Seizure!” it’s like “Ugh, i cant stare at that any longer or i might have one.” and when it rains i am about 50/50 odds of having one at some point.

Epilepsy is just very random and very different for most people, and it’s far more common for Autistic people. A seizure can be just about anything, or triggered by anything, in fact one of my big guarantee triggers is chocolate. what the crap, right?

i just get tired of the overused media stereotype that if you’re epileptic, you cant drive, you cant live alone, you;re basically 3 flashlight clicks away from swallowing your tongue and losing your bowels. it’s just such a wide spectrum with lots of variation you never see in pop culture.

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Chocolate! Damn, that must be frustrating. But at least easy to avoid, I guess. I’m glad you’ve got the epilepsy quite well controlled now. And I agree, the portrayals of seizures seem to be very limited to tonic-clonic (perhaps for dramatic effect :/) and the idea of flashing lights triggering it is very overstated these days. Thank you so much for all your help! Much appreciated.

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I had Seizures part of my autism

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Disclaimer: I personally don’t have Type 1 diabetes or epilepsy, but I’m not planning on talking about that at all, but my dad has it, and was diagnosed within the past few years, so I asked him about it.

I’ve read and seen a lot about Type 1 diabetes, and I’ve spoken to my dad about it. One thing that’s commonly ignored is, as @/MiniMoxx put it, is that Type 1 diabetes can happen at any point in one’s life. It most commonly happens from the ages 4-14, and is diagnosed very shortly after onset, due to how quickly and obviously the symptoms happen. My dad explained that in children, the immune system attacks the pancreas and puts it “out of commission” very quickly, often within days or weeks, and then the symptoms are extremely obvious, and if not caught right away, can lead to hospitalization or death. On the other hand, my dad was diagnosed with Late-Onset Type 1, after getting misdiagnosed with Type 2 for almost a year. The damage to his pancreas was significantly slower than what usually happens, and he was never hospitalized. From what I remember from that time (it was about six or seven years ago that he was diagnosed) he was constantly in a bad mood, and always seemed sick with something. But this was ignored by multiple doctors because they assumed he must have Type 2, since he was in his 30s, and not a child.

My dad didn’t have any specific input on this, but personally, something that I don’t see a lot is how often diabetics have to check their blood sugar levels. My dad has a CGM (Continuous Glucose Monitor) which helps some, but his CGM still requires my dad to manually check at least once a day. (To check, you have to prick your finger, put some of the blood onto a test strip, and have the glucose meter check it.) Also, something that I’ve never seen mentioned is “Sharps Only” containers. We have at least three of them sitting around the house, because it’s not super safe (and not allowed) to just throw used needles into a trash can.

Edit to add a couple more thoughts:
@/MiniMoxx has a very good point when she brought up the fact that a lot of people assume that when someone’s injecting insulin, they’re shooting up drugs of some sort. My dad has had to argue with people who have told him that he can’t bring his insulin and things into insert place here, and while my dad’s personality is very confident, and he’s never gotten upset by people assuming that he’s a drug addict or something (he just ignores them), it’s still somewhat common for people to make that assumption anyway.

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no problem. here to help. i guess you could say i’m an…open book.
(bu-dum tss)

Thank you! Even if you don’t have diabetes yourself, you obviously have a lot of exposure and insight from your dad. I knew Type I could happen later in life, but I’ve never actually heard of it happening to someone. Thanks for the added input on people assuming that he’s shooting up. It seems like that’s a common problem and that’s really helpful to know. I’ve actually already included Sharps containers! But that’s probably because I have to use them myself lol. Thanks again :slight_smile:

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Forgot to add this to my comment actually lol.
My Dad was diagnosed at 32 years old - and to that, the doctors when I was diagnosed told us that it CAN be hereditary, but it usually skips a generation (so instead of going to me, it ‘should have’ according to science at the time gone to my child instead) so at that time we were an enigma of sorts lol.

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Oh, that’s weird! Genetics like to mess us around, I guess. Did you find it helped to have someone in the family who already knew how to manage it, etc?

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It is weird :rofl: I was like: well thats just typical lol.

It was really helpful. I was used to what it meant, what the kit was, what a hypo looked like and what to do, that kind of thing.
I used to go to a support group when I was diagnosed and I genuinely felt kind of grateful in a way that I’d been so exposed to it because a lot of teenagers found it really hard to cope and get their head around it, and some were in denial so wouldnt inject or test their blood etc, whereas I knew what it meant if I didn’t so it kind of kicked me up the butt too in a way XD

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Diabetes Type 1:

  1. We can’t eat sugar under any circumstances (In reality, I eat sugar everyday lol, I just need insulin)

  2. Carb counting, the slow acting insulin test (Which means no carbs all day to see how your glucose varies on itself with the slow acting insulin) and stuff like that

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Oh, awesome. It’s a big adjustment either way, but I’m glad that it did help a bit! :slight_smile:

Thank you for your help! I can imagine that avoiding carbs for an entire day is a right pain in the ass :open_mouth:

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Yeah. The upside is family buys lots of olives and cheese for you

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@MiniMoxx @Merlifan @CoraLeacock28
Please don’t feel like you have to respond, but if it’s alright, could I please have a little insight into what it’s like eating out at restaurants/pubs/etc? I just want to check my research is in fact accurate and covers everything, but again, only if you don’t mind. (It’s the last time I’ll bother you, I promise).

I’ve got the main difficulties as: not knowing when food is going to arrive, overly large portion sizes, making sure sugar-free drinks have not been mixed up with the sugary versions, and trouble calculating accurate doses for the food. Have I missed anything?

Also, I’m guessing it’s helpful when the restaurant publishes the nutritional content of their food? Would you ask for sauces to be separate from the rest of the meal or to swap out high-carb items like potatoes for other things? Do you ever get dessert and if so what would you go for?

Again, thank you so much. I really appreciate this.

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Inyecting insulin in public and getting weird looks, is all I can think about rn, I’ll tell you if anything else comes to mind :slight_smile:

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Thank you! :slightly_smiling_face:

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