Tag: diabetes stigma

type 1 diabetes diagnosis

Type 1 Diabetes Diagnosis and Things They Don’t Tell You

Type 1 Diabetes Diagnosis and Things They Don’t Tell You


This is a topic I’ve wanted to write about for awhile. When receiving my Type 1 Diabetes Diagnosis well over a decade ago—it was all just a blur in my mind. I remember the significant parts. I remember feeling ill and being told that I had type 1 diabetes. But it was also a moment of sheer disbelief, fear, and confusion.

Being in the ICU with DKA is not a place anyone wants to be. It’s hard to fully process a type 1 diabetes diagnosis in just a short hospital stay. What are the questions that I need to ask? What does this all entail? The doctors and mostly nurses just spilling information and I couldn’t grasp all of it, if any.

At the time of my diagnosis I learned the basics. Which was how to inject myself with insulin or how to have the assistance of my mother. I learned how to check my blood sugar, how often, and what the numbers meant.

But being at the hospital is like having a babysitter. Someone, a medical professional who can keep an eye on you until you leave. It’s when you leave the hospital—that’s when the real work comes into play. And it’s a lot more complex then I could have ever anticipated.

 

Type 1 Diabetes Diagnosis and Things They Don’t Tell You:

 

How Consistently Inconsistent Life Now Is

After I went home I was still in the honeymoon phase and my body responded well to the insulin. But after the honeymoon phase wore off, it was chaotic for many years following. During the teen years not only was I growing but I was also combating hormones. Now I know that diabetes is constantly changing and so is my day to day insulin requirements.

I soon learned how volatile my blood sugars can actually be. That even if I eat and inject myself with the same amount of insulin everyday, the results can vary. It didn’t happen overnight, but over the years I learned how to adjust and find certain trends.

My accuracy is NEVER perfect, but I take pride in making small improvements. Thankfully now I have a CGM (continuous glucose monitor) which helps me keep a closer eye on where my blood sugar is headed before it becomes severely life-threatening.

How Strong You’re Going To Have To Be

I don’t know if I was this strong to begin or I had strength thrust upon me due to necessity. But I’ve become incredibly strong due to having diabetes. I’ve learned to react in life-threatening situations, save my own life everyday, and to embrace the uncertainty. I was never prepared for how strong I’d have to be. It’s definitely not for the weak, and in many ways it’s made me the person I am today.

 

How Much Sleep You’re Going To Lose

When I was diagnosed my mother took the brunt of the work. I don’t think a physician has to really suggest “sleep-less” or “wake up at this time” because it’s almost instinctual. As I got a little older I started taking the reigns and I’ve been going ever since.

The feeling of exhaustion never seems to go away. I still find myself 15 years down the line going to bed late or wake up at odd hours. I don’t think it will ever stop. But I do take comfort in knowing that while it has taken a lot from me, I still manage to live beyond it.

 

How To Cope With The Emotional Challenges

There’s a lot more that goes into managing diabetes then the physical stuff. But I wasn’t prepared for everything else that would follow. The frustration, depression, anxiety, sadness, anger, guilt, shame, fear, burnout, all of it. Some has comes in spurts, some even all at once.

One day I can be absolutely fine, and then the next day I feel utterly defeated. I once thought that I was the only one who felt like this because my doctors never really mentioned how diabetes can affect ones emotions.

I used to think that showing weakness was a sign of failure. That I have to constantly live up to expectations and be evaluated on how well I’m doing and how I can improve. But what I’ve learned is that I’m still here, and if I’m still here I’m giving it my all. I’ve learned to turn my weaknesses into a strength, share and relate with those going through the same thing, and find ways to continue to better myself.

diabetes and the unexpected - diabetes blog week

How To Face The World

When I received my type 1 diabetes diagnosis —I didn’t know what diabetes was. I knew about as much as what most learn on television. But instead of making small or moderate lifestyle changes to manage my condition, my life COMPLETELY changed.

Diabetes is seen as a “fat persons disease”, that someone ate too much sugar, is overweight, and doesn’t exercise. However, I wasn’t any of those things. I learned that I had an autoimmune disease which no one in my family had. I learned quickly how little people actually know about diabetes.

I now was forced to inject myself everyday with insulin, watch the amount of carbs I eat, and closely monitor blood sugar levels. But what was even harder was feeling accepted for my diabetes. I soon learned I wasn’t like other children or teens. It was hard to adjust going back to school, socializing, and being active. People would make jokes or tease me for using syringes. For awhile I felt ashamed for having diabetes and I felt like I needed to hide it.

As I’ve grown older, I realize that not everyone is going to have empathy or understand my condition. And when someone doesn’t understand, it can also make them feel uncomfortable. But what diabetes has given me is the compassion and empathy to understand those who do have diabetes and other health conditions.

I’ve learned to rise above the stigma, the judgment, the cruelty and live out my own purpose. To raise awareness, to bring light to a difficult situation, and to let others know they are not alone.



 

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.


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Why Are They Judging Me?

Why Are They Judging Me?

Why Are They Judging Me?

By: Marrium abid Sandhu

Some people have a background or a story that is so central to their identity that they believe their life would be incomplete without it. Here’s my story..

Why are they judging me?

Is this the reality or do I suffer from schizophrenia? I’m not from another galaxy, I mean, I just have diabetes.

Society took it upon itself to delineate me as a diabetic. On the mention of my name, the ignorant minds of humans formed an image of a weak, disoriented, bewildered and egotistical teenager.

I was nine years old when I was first diagnosed with type-one diabetes. It shook me to my core. I was not old enough to even comprehend what diabetes meant. But the way people around me reacted; it felt as if I was an unstable nucleus emitting radiations.

My heart told me to be optimistic, persuaded me to look at life from this new perspective, but everything in my life went downhill. On various occasions during the early stages, I was able to pick myself up and do my daily chores the normal way but that did not last that way for long.

Pricking my fingers four to five times a day and taking insulin shots before every meal was never an easy task. Until high school, I used to go around hiding the fact that I was a diabetic. I had an irrational fear of people judging me. I hardly socialized. I kept to my room and to myself, reading miserable and depressing novels, injecting myself with something that was supposed to make me better but felt no less than a cruel punishment.

As I grew older,

things started to improve and diabetes became a part of my daily routine. I realized that having diabetes was a part of me but it in no way defined me. It had rehabilitated me. It had made me resilient, mentally and morally.

As I progressed through high school, I craved to do better in academics, sports, and life in general. Having diabetes gave me strength to face any challenge or problem that came my way.

Friends are of imminent importance, you cannot function without having someone to talk to, someone to associate yourself with. Socializing made me grasp the significance and need for someone to share my feelings with, someone to trust with my problems.

My family and I shifted a lot due to my father’s work. Being on the go, I constantly met new people who made me confident in my own skin. I went to Greece on a school trip for 4 weeks. Exploring a new country, a completely different environment was an experience I will trade for nothing.

Doing everything myself, from shopping to laundry, I gained a fair bit of poise and familiarized myself with adapting to a new place and a completely different way of life. The diabetic, anthrophobic girl had transformed.

My hard working and astute sense of nature led me to be selected as a part of my school’s student council and in addition I represented my school in various national level sports competitions. I volunteered myself to help the underdeveloped schools in my city.

I taught English and Mathematics to a group of class 9 students. I saw a whole new way of life within my culture in that school. And now I’m studying architecture in one of the best universities in turkey.

I am a diabetic.

And I do not have a problem with people judging me because of that. If they judge me, it does not depict who I am, it depicts who they are.

To sum it up in the words of Sonia Sotomayor, the current associate justice of the Supreme Court of the United States,

“Diabetes taught me discipline”.



 

Diabetes Shame and Blame

Diabetes Shame and Blame

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

“Oh you have diabetes? I heard you can cure it with diet and exercise? Is it the bad kind? Did you eat too much sugar as a kid? Why don’t you take care of yourself? If I had diabetes I would be a great diabetic.”

If not dealing with a life-threatening illness that has no cure was difficult already—you also have to deal with the shame and blame that comes along with this disease.

Society has made diabetes such a shameful word.

No one really understands the ramifications associated with stigma. How it affects young children and adults who manage this disease.

It all stems off of unawareness, influence of the media, and lack of education. But how can we be point fingers when even doctors are misinformed?

Diabetes is now characterized as sugary food items, Unicorn Frappuccinos, and BigMacs. People joke and assume that they could get diabetes by consuming these. Which is a huge misconception because diabetes can happen to anyone, at no fault of their own.

Many do not know that there are two types of diabetes. Type 1 Diabetes– which is an autoimmune disease, and Type 2– a metabolic condition. Both of which are very complex chronic conditions.

The real issue behind this is that young babies, children, and adults are at risk of dying from not catching the signs of diabetes in time.

Not only that, but diabetes is serious. It’s as serious as any other disease. It consumes ones’ life and demands constant attention. No one should feel ashamed of their diabetes but should feel self-empowered to manage it.

The more we talk about the issues and raise awareness, the more conversations we can start. And hopefully more lives can be saved.

The stigma needs to end.

What Diabetes Really Is: (Spoiler) It's Not a Unicorn Frappuccino

What Diabetes Really Is: (Spoiler) It’s Not a Unicorn Frappuccino

What Diabetes Really Is: (Spoiler) It’s Not a Unicorn Frappuccino

Diabetes…

How do I describe diabetes?

Or what is it like to live with it?

When you look on the internet it’s defined as mostly sugary foods, cake, BigMac’s, soda, and a Unicorn Frappuccino from Starbucks. A Unicorn Frappuccino is loaded with sugar, but it WILL NOT cause diabetes.

There are two types of diabetes:

Type 1 Diabetes– where the immune system attacks the insulin producing cells in the pancreas. And Type 2 Diabetes– where the body doesn’t use insulin properly and can sometimes be controlled with diet and exercise. But genetics can also play into Type 2, where it had nothing to do with one’s lifestyle. But I digress…

It’s funny right?

Sometimes I question whether I’m too sensitive about it. Whether it’s not that big of a deal. Right?! You have to laugh to get through life.

I get it. The memes are humorous to those who don’t know anything about it. Ignorance is bliss. But is the disease humorous? Is it really? I mean I wish I could laugh it off.

But I face this monster everyday. And it is a monster. It’s not funny. It’s not a joke.

When I was diagnosed

My mom didn’t know the signs of diabetes. No one in my family had diabetes. I had symptoms similar to the flu: fatigue, thirst, weight loss. Little did I know that my pancreas stopped producing insulin. I was slowly dying and by the grace of god I managed to get diagnosed just in time. I now needed insulin injected into my body for the rest of my life in order to sustain life. It’s easily misdiagnosed and many die because so many people including doctors are misinformed about this disease.

I was 12 years old! No, nothing I ate caused this. My mom cried and blamed herself thinking she caused this. The stigma is that diabetes is self induced. That if you live a healthy, active lifestyle you’ll never get diabetes. THAT’S FALSE. I was diagnosed at 12 with type 1 diabetes and my life changed forever. It wasn’t funny then and it’s not funny now.

I grew up hiding my diabetes.

Kids at school would make fun of me. I didn’t want to be different. “Oh did you get diabetes from eating too much sugar?” “I heard if you eat a balanced diet you can cure it.” I’ve pretty much heard everything you can think of. People have laughed in my face about my own disease. But nobody knows what happens behind closed doors. They think it’s a “food” disease. Well that insulin I need to stay alive, also can potentially kill me. It’s a 24/hr job to stay alive.

Unless you personally experience diabetes and it’s many affects you just won’t get it. I understand that. There’s been many times where I’ve gone unconscious from a low blood sugar, I’ve had a seizure, I’ve been hunched over in pain from DKA (where my body wasn’t receiving enough insulin). I would do anything to cure this disease. To get rid of this monster. To not have this disease inflicted on anyone, not have the fear of losing limbs or damaging organs, and not have the fear of suddenly dying.

This all seems harsh and dramatic.

But unfortunately it is.

Yes, life is tough. But so is diabetes.

I don’t let this disease define me.

But I sure won’t let others define my disease as something it’s not.


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Where Is The Love For Diabetes?

Where Is The Love For Diabetes?

…Not the love for the needles, insulin injections, finger sticks, and blood.

But love as in compassion, empathy, and understanding for those battling diabetes.

Society has made diabetes such a shameful word. While patients with heart disease and cancer are showered with sympathy and compassion, people with diabetes are often criticized and mocked for assuming they caused it themselves.

The negative perception has a profound effect on how those living with diabetes are able to manage. The misconception that eating too much sugar causes Type 1 Diabetes (an autoimmune disease), contributes to many cases of misdiagnosis and sometimes even death.

Even the fact that Type 2 Diabetes (insulin resistance) can be contributed by eating unhealthy, excessive weight, and inactivity; that’s not always the case. Genetics can also play a role in Type 2 Diabetes, and even significant lifestyle changes may not always help manage the disease.

Diabetes has become a “shame and blame” game. It’s easier to place the blame, feed into what the media says, and make jokes. Leaving those living with diabetes to feel ashamed of their own disease.

But it’s very difficult to overcome the stereotypes with this disease.

For instance, I spent much of my childhood struggling with the fact that I had Type 1 diabetes. I went to school and I felt embarrassed by having a disease others didn’t understand and made fun of.

I wouldn’t check my blood sugar or take needle injections in public. I would get stared at and was teased for taking “drugs” when this drug (insulin) was the only thing keeping me alive.

Years later I started informing more and more people I met about my disease. For many, I hear it was the first time they have ever heard of Type 1 Diabetes. Many also assumed that eating too much sugar caused my diabetes. But I kept pressing because I starting realizing that knowledge is power.

It never occurs to people that diabetes can happen to anyone, at any age. That diabetes can happen even if you eat healthy and exercise. Most of the world isn’t informed on how life-threatening and deadly this disease is. I’m lucky I’m here today, and thankful I was diagnosed in time. I for one didn’t know what diabetes was before I was diagnosed either.

Now reflecting on this issue after a decade, I realize that the stigma hasn’t changed.

I’ve spoken with many in the diabetes community. Half are against the jokes and understand the dangerous repercussions. While the other half feel it’s important to not let what others say get to you. That even if we push, nobody will understand the disease anyways.

But I believe if we’re going to fight everyday, we should fight to make our life and other lives better in any way. The more people know… the more research being done… the more money being raised… the more access to devices and resources… the more awareness being spread about the issues and struggles many go through everyday.

We fight a battle that many don’t understand… but why do we have to fight it alone?

If we don’t push… how is anything going to change?

The stigma has to end.

Where is the love for diabetes?


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Diabetes Isn’t a Punchline To Your Joke

Diabetes Isn’t a Punchline To Your Joke

For as long as I’ve had diabetes I’ve been battling the stigma associated with this disease. Even though diabetes has been around for such a long time, it’s still a hard wall to break down.

The ever so common assumptions:

Sugar causes diabetes

If I eat this — I’ll get diabetes

Diabetes is caused by being lazy, poor diet, and from being inactive.

All of which are FALSE

These assumptions place blame and guilt on those that could have never prevented getting the disease in the first place.

Yes, there are two different types of diabetes. Type 2, which the body isn’t producing enough insulin and diet and exercise play a role in management. But with Type 1 Diabetes an autoimmune disease (which I have) my body doesn’t produce insulin at all. There is nothing I did to cause it and there is no cure.

So this week on World Diabetes Day I came across a post by a popular food Facebook page (not mentioning names) but they posted a video named “The Diabetes Pizza”. My first thought was “oh this must be a nice healthy recipe”. WRONG. It was a video showing the toppings and ingredients that included things like: candy, bacon, and unhealthy food choices.

I was astonished that “this pizza” was representing diabetes as a punchline. Yes, I have a sense of humor and can enjoy a good laugh. But really, on World Diabetes Day of all days? Kind of ironic! It wasn’t the joke that bothered me. I get it. It’s the underlying message for others not aware of diabetes. This is diabetes awareness month after all. Diabetes is not a joke or a laughing matter.

Diabetes Isn't a Punchline To Your Joke

Say for example someone is not aware of diabetes and starts experiencing symptoms. Their first thought might be — “it can’t be diabetes because I eat healthy and I’m not overweight”. These stereotypes and misconceptions can inhibit someone’s perception of this disease and delay diagnosis which raises the risk of complications or death.

I went ahead and brought it to the attention of the diabetes community. Where one parent of a diabetic thought it would be a great idea to post memes and awareness facts on their post to get the message across and many other diabetics and family members soon followed. Yes, it seems redundant and pointless to some. But if at all it can save ONE life, that’s at that really matters.

The post was later taken down the following day, not sure as to why. But regardless, I think that was one small victory in our favor. Not because someone posted something funny about diabetes, and we just didn’t like it. But because we had a voice for diabetes. We raised awareness for a disease that is serious, life-threatening and affects our lives everyday.

It could have easily been a day where someone told a joke about diabetes where many are the brunt of the joke. But instead, it was a day where we stood up for our disease and risen above the stigma.

Happy Diabetes Awareness Month!

Let’s End Diabetes Stigma!