Tag: diabetes stigma

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 cookies, cake, BigMac’s, and a Unicorn Frappuccino from Starbucks. A Unicorn Frappuccino is loaded with sugar, but it WILL NOT cause the onset of Type 1 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!