Tag: stigma

“Diabetes Isn’t Even That Bad”

“Diabetes Isn’t Even That Bad” …

When I hear this statement it frustrates me. Not because I wish to allow someone’s opinion or thoughts to affect my life.

Not because it is the worst possible condition, because I know it’s not.

I’m extremely thankful for everyday I’m alive, the technology, advancements, and the chance to live a long life.

But because of how UNTRUE that statement actually is when you truly understand the disease.

Diabetes doesn’t seem bad until it enters your life…

Diabetes is when your body basically wages war on itself. In Type 1 Diabetes the immune system attacks the cells in the pancreas and no longer produces insulin. Now it is an everyday battle to maintain normal blood sugars that affect how we feel, our moods, and how we are able to function.

Diabetes is where children are dying from diabetic ketoacidosis because the doctors thought the child had the flu.

Diabetes is where parents are not able to sleep throughout the night, constantly checking their child’s blood sugar, being in fear of their child having a seizure or going into a coma.

Diabetes is where you wake up in the middle of the night drenched in sweat, feeling lost and confused, and having to fight to save your own life by guzzling juice or eating whatever you have nearby.

Diabetes is being dependent on an insulin that costs more than most people pay per month for mortgage. Having to find ways to make food stretch so that you don’t have to go without your insulin to stay alive.

Diabetes is constantly having your eyes, kidneys, and feet checked to see how the diabetes is affecting your body. There is always the risk of complications and the unknown is scary.

Diabetes is finding yourself exhausted all the time, fighting through some really bad days and wishing you could be healthy again.

Diabetes is where you’re constantly managing a disease that will never get better. You sometimes beat yourself up for the lows and high blood sugars, but deep down you know you’re doing the best you can.

Diabetes is having people say “lose weight” or “try this diet” and it will go away. Or someone telling a parent their child’s diabetes was caused by “eating too much sugar”.

Diabetes is living with a disease that could cost you your life while politicians blame the people who have diabetes for costing the healthcare system money. As if it’s our fault that our immune system decided to attack our pancreas.

Diabetes is life-threatening, costly, and an all-consuming disease. And the more we acknowledge “the bad”, the more we can change how this disease is perceived and can help those who battle it everyday.



 

Things Only a Person With Diabetes Would Understand

Things Only a Person With Diabetes Would Understand

By: Rachel Murray


I think the most frustrating part about Type 1 Diabetes is there is no breaks with it, you can’t just turn it off when you’re tired or when your sick of it. You can’t just stop thinking about it because you can’t be bothered for a day.

You can’t just do day-to-day things like eat foods, exercise, shower etc, without taking diabetes into consideration. You can’t leave the house without double checking that you have all your supplies, it’s also trying to find the room for supplies in your bag, finding the time and space to fit spare cannulas, reservoirs, insulin, blood glucose meters, sugar, snacks etc.

It’s pulling out the meter out in public and getting “oh whats that?”, or doing an injection and getting comments like “ah does that hurt?” “If I had to do that everyday I would die haha!”

Or getting told to go do your injection in the bathroom because it’s “disturbing” someone’s meal. It’s the comments you receive like “why don’t you just go on a diet?” , “so you can’t have sugar”, “you don’t look overweight”.

 

It’s remembering that not everyone will understand your disease, and trying not to get frustrated when they don’t understand. It’s frustrating because you can be fine one minute, and then passed out on the floor the next and the fear of falling asleep and not waking up again.

It’s the reminder that you will never live a full life if you don’t look after your diabetes. Doctors say that I could die “earlier” than “normal people”. I may go blind, I may have limbs amputated, my kidneys may fail, plus hundreds of more complications.

It’s the feeling as if you have everything under control, and then it just flips in a matter of hours or even minutes.

It’s the frequent hospital visits and admissions. Its the nagging you receive from your parents and your endocrinologist when you accidentally slip up every once in a while.

It’s the “why me” feeling, “why did I get chosen…”

It’s the having nobody to understand that blood glucose fluctuations can and will affect my moods, and I may not always be able to control it.

It’s the missing out on things, or just wanting to lay around all day because my blood sugars aren’t perfect.

It’s the late nights, getting up every 2 hours or more often, just to check the blood glucose machine reads over 4 so you don’t have a fit in your sleep.

It’s watching peoples disappointment when they see you struggling or not trying.

diabetes and the unexpected - diabetes blog week

 

It’s the disrespectful and frustrating comments that absolutely kill you inside, but you have to laugh it off anyways and pretend it was a good joke, like “Why are you shooting up in public, haha!”… “Oh you’re such a druggo, haha!”… as your thinking to yourself “laugh it off and praying that they will go away and leave you alone…”

As much as I have tried to accept my life threatening disease, I accept that unless the health professionals find a cure for my life, then this is my life forever.

I can’t help it.

I sometimes hate the way I have to live and often think of my life being better if i wasn’t around.

I can’t help think of the two words, “why me”.

I can’t help but think “why can’t my pancreas just produce insulin like a normal person does?”

And then I think…“Why can’t I be normal”.

But this is your life and you just have to keep going.


share a story


 

I Have Diabetes –

“I Have Diabetes”

By: Tiffany Slabbert

“I Have Diabetes”–

A phrase said by a number of people at any point in the day. It is a phrase that can limit you or it can motivate you – the choice is up to you.

In the beginning when I was first diagnosed –

I used to think it was some sort of punishment to be labeled as “the kid who is sick” and all the stigma attached to being diabetic. It was a combination of being slightly teased about being diabetic as well as the half-hearted: “I would never be able to eat sugar” or “Can you eat that?” responses. Or the constant blood glucose readings and injections and having to excuse myself from class or exams to eat due to low blood sugar. All of this somehow caused me to become ashamed of my diabetes.


why managing diabetes is a full-time job


It wasn’t my fault and it was definitely not a punishment –

Yet I felt as though saying that simple phrase “I have diabetes” would cause my world to shatter and fall apart. I felt judged, like somehow I did eat too much sugar or not exercise enough and that’s why I became a diabetic. When deep down I know there’s nothing I did or could have done to prevent this. It’s a disease that can happen to anyone.



It took me a long time to get over this mindset I had created –

It was a battle to change the way I viewed myself, I am not a broken human, but instead I am completely 100% me. Now wherever or whenever I say that phrase, I own it. I am proud to be a survivor and a type 1 warrior!

Be proud of how far you have come, and never give up. You are greater than your highs and lows.



 

what living with diabetes feels like

What Living With Diabetes Feels Like

What Living With Diabetes Feels Like

Diabetes is often perceived as a self-inflicted disease. It’s assumed that someone brought it upon themselves by poor eating and lack of exercise. It’s commonly joked about and mocked in conversation with reference to body image and sugary foods.

With so many misconceptions and negative stereotypes, it causes this disease to be greatly overlooked. For those battling to often feel misunderstood and ashamed. From the outside looking in, it may seem that insulin is the solution—however it’s not, it’s my life support. That maybe if I change my diet all my problems will be solved—unfortunately that will not cure my diabetes.

To be honest, I had no idea that I would get sick one day and never get better. That my immune system would attack the insulin producing cells in my pancreas. An organ that I didn’t know existed prior to diagnosis or how important it actually is.

That I would have to work at this every day—whether I like it or not. By testing my blood sugar, taking insulin injections, and balancing what I eat.

Some would say “that seems tough” or “I could never do that“. But they don’t realize that I don’t have a choice.

If they only knew that diabetes is much more than “just” that. Diabetes is much more than what managing it looks like on the outside but how diabetes feels like on the inside. There’s a lot of emotion that goes into it. A lot of thinking, a lot of worrying, a lot of uncertainty, and sometimes a lot of chaos.

If only they really knew what living with diabetes feels like:

It’s that dry, fruity breath and taste in your mouth. Where nothing can quench your thirst.

The brain fog where you feel out of tune with your own body.

The pain or burning sensation when taking insulin to keep us alive. Constantly feeling like a pincushion.

Having scars left that mimic battle wounds. That are placed on the most insecure parts of your body.

The dazed, confused feeling of where am I and how did I get here. This disease not only alters your body but your mind.

The dependency of not only insulin, but medical equipment, devices, meters, and food when we get low.

Guilt that weighs heavy on us. That is carried from our day to day tasks, our mistakes, and wishing we didn’t have to learn the hard way.

Being extra cautionary towards injuries, infections, wounds, and always having paranoia. Our bodies taking longer to heal.

diabetes and the unexpected - diabetes blog week

The pressure builds from the responsibility on our plates. Having every intention to do good, but doesn’t always appear to work out that way.

Patiently waiting for the highs to come down or the lows to come up. How EVERYTHING affects our blood sugar.

The inevitable being present. This disease takes a toll on our bodies and we feel it. No matter how well in control we are.

The blurry vision and the lack of focus.

The anger that seeps through from the rollercoaster ride of blood sugars and emotions.

The tired feeling from doing this day in and day out for so long and trying to stay strong. With no days off and no vacation.

Having the feeling of everything being wrong but having the inability to put it into words exactly what that is.

I Want To Be Cured—Not Managed.

I can still live a long fulfilling life if I take care of myself to the best of my abilities. Knowing things could be much worse. I’m grateful for all the advances in technology and the everyday improvements being made in diabetes management.

But we still need and deserve more—we need freedom from Type 1 Diabetes. The burden to be lifted from our shoulders and our family members. Where we can sleep soundly, not have to deal with the highs and lows, or be dependent on insulin.

If more people knew more about this disease. How insulin is not a cure, how it is life threatening, and what living with diabetes feels like to those battling it every day. Then maybe—just maybe, they will want to help cure it too.