Stigma Archives - The Diabetic Journey

Category: Stigma

“Diabetes Isn’t Even That Bad”

Posted on August 15, 2021August 15, 2021 by thediabeticjourney.com

“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.

What It’s REALLY Like To Have An Invisible Illness

Posted on June 20, 2022June 20, 2022 by thediabeticjourney.com

It never occurred to me that one day I would wake up sick and never get better.

But here I am.

I have a chronic illness known as type 1 diabetes, that significantly impairs normal activities of daily living. An invisible illness that shows no outward signs, and to the rest of the world – I don’t look sick.

My invisible illness can easily be hidden, as I look healthy like everyone else. A smile can easily disguise any pain or distress that I’ve experienced that day. My clothing can hide the medical devices I need to stay alive.

I never let my invisible illness stand in my way. I’ve adapted and I know how to care for myself. I manage the best I can. Most of the time I just feel like I’m on autopilot as if I’m in “control”. Nobody can tell what I deal with behind closed doors.

It’s when days boil over, I look pale and disorientated, and reaching for sugar nearby. That’s when someone asks “are you alright”? That’s when I say “yes, I’m okay - I’m fixing my blood sugar, it’s low“.

“I hope you get better soon” –

I hear the sound of deep concern and empathy in their voice – I do. I’m sure I would say the exact same thing if I were them. However, as days here and there are better than others. I don’t get better.

“Have you tried [insert herbal remedy or diet]?” –

As much as I appreciate others desire to help, there is unfortunately NO magic potion. In fact, I have had to adjust and make huge lifestyle changes. But no amount of healthy eating, exercise, or herbal remedy will ever eliminate the need for insulin - or cure my diabetes.

“Isn’t it caused by [insert myth]?” –

No, it’s not caused by something that I did. It’s not caused by sugar, lack of exercise, or from being overweight. It’s upsetting feeling blamed for having an illness that I couldn’t have prevented. Diabetes, and so many other invisible illnesses are placed into a isolated bubble of “what we could have done differently” to avoid this. When it could literally happen to anyone.

“My aunt has that and she’s doing just fine” –

I’m happy for anyone who is doing well managing. But reality is – every chronic illness is different for everyone. With type 1 diabetes especially, it often gets confused with type 2 diabetes and its treatment. It’s confusing and irrelevant to talk about how one person with an illness is doing compared to another. With any invisible illness, we all have different body chemistry and hormones. And with diabetes – different sensitivities to insulin.

“Well you’re lucky, it could be a lot worse” –

This is when the guilt kicks in. Yes I’m lucky I’m alive, but everyday is still a life threatening battle. Where no two days are the same. But no matter the good or bad days that I have, I just have to keep going. Have faith, and hope for a cure in the future. Until then, just make everyday count and live beyond this illness.

I’m trying –

It may take more for me to complete the same tasks others do, but I do it anyways. I may not have it all together, but I never give up. Some days I don’t know how I’m going to get through, but I always persevere. I have an invisible illness, and even though my symptoms may not be visible, it’s still there.

I Have Diabetes -

Posted on June 8, 2022June 8, 2022 by thediabeticjourney.com

“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.

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.

Diabetes Shame and Blame

Posted on May 17, 2022May 17, 2022 by thediabeticjourney.com

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.

Where Is The Love For Diabetes?

Posted on December 20, 2021May 1, 2022 by thediabeticjourney.com

…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?

Diabetes Isn’t a Punchline To Your Joke

Posted on November 19, 2021January 13, 2022 by thediabeticjourney.com

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.

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!

What Living With Diabetes Feels Like

Posted on August 11, 2021May 31, 2022 by thediabeticjourney.com

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.

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.

11 Type 1 Diabetic Misconceptions

Posted on April 4, 2022April 3, 2022 by thediabeticjourney.com

I’ve had Type One Diabetes for quite some time now - 14 years to be exact - and within those amount of years I’ve become fully aware of how misunderstood Type One Diabetes actually is. I’ve heard an endless amount of diabetic misconceptions. It’s hard living in a world where you’re placed in a category with Type Two Diabetes as well. Don’t get me wrong, we all fight a hard battle - but it’s each our own. It’s two completely different diseases in my eyes.

I’m here to set the record straight…

(11) Type 1 Diabetic Misconceptions:

1. “Did you get diabetes from eating sugar or gaining weight?”

Type One occurs when your body attacks the cells in the pancreas that produces insulin. There’s no specific rhyme or reason behind why this happens. It’s possible to occur due to genetics or environmental causes, but there is no significant proof to back these theories. But what I ate or my weight was definitely not the cause. This is on the top of the list of most common diabetic misconceptions.

2.”Should you be eating that?”

Yes, I can eat that slice of cake! The myth that diabetics can’t have sugar needs to be thrown out the window right now! I can eat sweets in moderation, along with proper insulin management.

3.”Does using needles hurt?”

Of course, they hurt but I don’t have a choice in the matter. I don’t enjoy having to poke myself several times a day. But unfortunately, I have to in order to stay alive.

4.”My Grandma has diabetes”

Okay, stop right there. Yes, there are Type One Diabetics out there that are grandmothers, which I can totally relate to. But when you finish the sentence with “well she has Type Two” - “she manages with pills” - or “she just has to diet”, let’s not compare.

5.”Shouldn’t you have this figured out by now?”

No, I wish diabetes was that easy. It’s like trying to figure out a Rubik’s cube every day, only for something to change, and have to start all over again. I can never perfect my diabetes. I constantly need to make adjustments, and all I can do is try to manage my diabetes to the best of my ability with proper diet, insulin, and exercise.

6.”Can you have kids?” “Will they get Diabetes?”

Yes, you can have children with diabetes. You’re considered at a higher risk, but with proper control before and during pregnancy, you’re less likely of complications. Statistics show the odds may be greater with your children getting Type One, but on the other hand, there’s plenty of Type One Diabetics (such as myself) where this diagnosis doesn’t run in the family. So who’s to really say?

7.My sugars low - “Does that mean you need insulin?”

Absolutely not! That would be life threatening in this situation. When my sugar is low I need the energy from food to be able to function normally.

8.”What’s your blood sugar?” “Is that good or bad?”

Honestly, I really can’t answer this one. I’m constantly aiming for a perfect blood sugar number. Trying to keep my blood sugar in a good range is like walking a tightrope, hoping not to fall. I live in a different normal of what’s “good or bad” with my blood sugars, compared to non-diabetics. I have to maintain a good control while being able to function every day.

9.”Let me give you some advice.”

Are you a Diabetic? Are you a physician? If not, just please stop! Just because you can talk the talk - doesn’t mean you can walk the walk.

10.”It could be worse.”

Of course, it could be. I’m thankful that I have a disease that can be managed and can still live a long life. But please don’t make light of the struggle that I go through. It’s not the best situation, but I’m making the best out of it.

11.”I heard there’s a cure.”

There is no cure, however, there continues to be research conducted in order to find a cure. Currently, there are future prospects, but all we can do right now is keep fighting and pray for a cure in the near future.

What’s are some diabetic misconceptions that you despise? Please share! ***