Hey, it’s Shannon’s friend, ‘Ruby’, again. This post is going to give an insight into what it’s like living with Type 1 Diabetes. Often, I find people don’t really see it as a disability. Because you’re completely fine when it seems to all be going well. They dismiss those who struggle daily to the point they can’t live a quality life. And it sounds silly to admit but it happens.
You can struggle walking and standing when you’re low, the same if your sugar is too high, sometimes your body just caves in on you. Sometimes, You struggle to think and communicate, your behaviour can change, your mood can be affected. You can look totally fine while all of that is happening too. Even diabetics can have this view that it’s just a condition in the background and not a disability because it’s not “disabling”. But it is disabling, not for everyone sure but it definitely happens.
People’s Perceptions of Diabetic Life
People are sympathetic when they learn that I am diabetic. I know that people mean well but it’s very odd to me when they say “I could never do that”. Yeah me either until I actively started dying and had no choice 👍. But also being told “it could be worse” OK, go away! I’m sure it could but that fact doesn’t make things easier for me
I honestly don’t feel like doing it most days! And I’m pretty sure I’d be locked in a psych ward or at least held down and made to do it against my will if I refused to eventually .
This can lead to awkward situations. You know kids, they don’t really think about adult problems and how adults see things, because… they’re kids. And when I was 7, I showed a guy my injection bruises for sympathy votes and free things. Later, I learned he thought it looked like abuse and me and my mum had a conversation about it.
Once at primary school I was told to cover up when it was hot as my bruises made people uncomfortable (I carried this mindset to highschool and into working, as a result there was a lot of heat exhaustion and passing out).
Issues With The NHS
In my experience, there’s a lot of ✨️medical gaslighting✨️that goes on. I was born with kidney issues. However, when I go to the doctors to get help with the pain I am in, the state of my kidneys somehow becomes my fault. They dismiss it as something that happened because of poor diabetes control.
Professionals see it as a set of rules and if you don’t follow them, that’s your own fault and you brought on any damage to yourself. The rules are easy apparently. But that’s only if your body operates as a programmed machine with no external factors. Diabetes is affected by everything but somehow I’m still made to blame for that rogue few days of highs even though I can confidently say it was the weather. This means that they refuse to look further into my issue and leave me to suffer.
My family who aren’t diabetic get taken seriously. but if I have the same issue it’s brushed off as just my diabetes.
Portrayal of diabetes in the media
The media never portrays diabetes right. Even when diabetics see themselves portrayed in the media we have to celebrate because it’s one step closer to us being seen, even if the character or media really does not capture anything of value when it’s put into focus. They make it seem so simple or something you easily adapt and get used to but in reality it’s not like that for everyone and it can be a challenge every single day.
I can’t remember the movie name off the top of my head but there was one where they’re was a “type 1 diabetics” and they were trapped as as soon as they got above surface a paramedic injected her (in the wrong spot too) with “insulin” and she felt relief within seconds 😑. This is unrealistic. I think a movie based off of hansel and gretel where they’re witch hunters also had a small scene where they tried to imply diabetes without saying it bit used a stereotype I believe?
However, Coronation Street has portrayed a diabetic character and they’re actually doing some good research on that.
The Ogling Curiosity of Diabetes
I know people afraid of needles and blood that they have to turn away when they’re having their blood taken… but then some strangers, I have found, have a morbid curiosity. People have asked “Can I watch?” when I need to check my sugar levels, do an injection or change my pump. These are the more polite ones. Some simply just stare.
I have also had people grab my diabetes devices or touching them! Stop that! It can hurt sometimes. Sometimes it might get ripped off too and I don’t want that, please respect my personal bubble even when I have something that doesn’t fit the “norm” within view. Just because I’m not hiding my devices while they are attached to my body, doesn’t mean I’m an interactive exhibit. These same people wouldn’t want me touching their earrings, yanking them out, or necklaces, or watches.
The only difference… and it’s an important difference… is that their earrings, watches, whatever… aren’t saving their lives, monitoring them.
The Uncough Barbarians!
Some people can be uncough without meaning to. They say things that are not helpful at all. All it takes is for them to take one second and think about the words that roll from their tongue. Too often, I have heard phrases like “oh my ____ has that, they’re fine” or “I don’t have that, so…”. Even medical professionals do this. If someone had a struggle that isn’t the most common you’re dismissed and told it’s all in your head because no one else has the same problem.
No, they won’t. They also don’t have my fingerprint… I’m me. Just because my experience is different to A, B and C, doesn’t make it less valid. Everybody is different, and so is every BODY. We aren’t programmed machines.
But it’s not just the comparison of one diabetic person to the next diabetic person. It’s unsolicited advice from people I don’t know.
“Have you tried ___” no, and I don’t want to. It’s not safe and I’m pretty sure herbal magic tea won’t resurrect my beta cells. Because diabetes is often linked to diet, I am often advised by strangers on what I should and shouldn’t be eating… Why do people all of a sudden become experts when they see something they don’t think I should be doing. Again, not every diabetic is the same so unless you’re a medical professional (and even then) BACK OFF.
I think the worst thing one of these barbarians have told me, is to never have kids… because I can pass it on, and to only have kids if medicals can prevent diabetes from being inherited. That’s an attack on my family, including my mum who I was really close to. No one but me gets to decide on whether I have kids, stop spreading ablest nazism!
Navigating Diabetic Stigma and Relationships
Even as a kid I was shamed and questioned and even told I was wrong! People telling me that I ate too much, that I had too much sugar, blaming my parents that I have this condition. I even had parents use me as an example to their kids that “this is what happens” to scare their children, crazy stuff. Weird comments too, even said around me as a child reminding me about going blind, having toes/feet/legs chopped off and organ damage/failure
Then you have the people who think in stereotypical ways: “you’re too young” or “but you’re not fat?” Disability—including diabetes— can happen at any age, with any shape. I have also found it hard to hold down a job. Workplaces are willing to accept me when I am functioning but the minute I malfunction, I am not suited to the job.
I have also lost friends because of my diabetes. People think you use it as an excuse because it happens too often that you’re not having a great day where diabetes isn’t cooperating. When you have to stop multiple times, divert to get food and drink because you’ve wiped through all of your supplies that you even packed extras of. When your diabetes tech suddenly fails on you, making you late to places. Or when you arrange an activity and you suddenly can’t take part anymore. It frustrates me too.
Bonus lil thing
If my libre sensor beeps at me one more time today I’m going to chuck it from a moving car window “alarm fatigue” is real today, but I won’t rant about that!