Tag: misconceptions

What It's Really Like To Have An Invisible Illness

What It’s REALLY Like To Have An Invisible Illness


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.

Photo Credit: Ashlyn Mills

“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.


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Top 10 Myths About Type 1 Diabetes

Top 10 Myths About Type 1 Diabetes

(Photo Credit: Josie Nicole)

Top 10 Myths About Type 1 Diabetes

Type 1 Diabetes is one of the most misunderstood diseases, and it accounts for 5-10% of all diabetes cases. Not many people understand the complexity or severity unless personally affected by it. Much of the stigma surrounding diabetes is brought on by myths and misconceptions. But as the prevalence is increasing worldwide, it’s important to debunk many of these myths and share the facts about Type 1 Diabetes.

 

MYTH: Type 1 Diabetes is caused by eating too much sugar –

FACT: Type 1 Diabetes occurs when the immune system attacks and destroys the insulin producing cells in the pancreas. There is no known cause but it’s believed that genes and environmental factors play a role.

 

MYTH: People with Type 1 Diabetes can be cured with diet and exercise –

FACT: There is no cure for Type 1 Diabetes (YET). Yes, diet and exercise is beneficial for anyone including those managing diabetes, but it can not treat nor reverse it.

 

MYTH: Sugar is off limits with Type 1 Diabetes –

FACT: People with Type 1 Diabetes are not limited to what they can eat. Insulin is administered to cover the carbs or sugar they eat. Too much sugar is bad for everyone, but moderation is key. Sugar is also needed and life-saving for diabetics with low blood sugar.

 

MYTH: If it’s sugar-free then it’s okay for Type 1 Diabetics to go ahead and consume –

FACT: Actually, many sugar-free foods are loaded with carbohydrates. In many cases where they have more carbohydrates than a product just made with pure sugar.  It’s always important to check nutrition labels because product packaging can be deceiving.

 

MYTH: You won’t get Type 1 Diabetes if you live a healthy and active lifestyle –

FACT: Type 1 Diabetes is not caused by ones’ lifestyle choices. Diet, activity level, and weight have no effect with the onset of Type 1 Diabetes.

 

MYTH: If a Type 1 Diabetics blood sugar is low or high then it’s their fault –

FACT: A low or high blood sugar can happen for many reasons – (insulin, exercise, illness, stress, hormones, etc.) There is no fault, just the nature of the disease at hand.

 

MYTH: Type 1 Diabetes is hereditary –

FACT: Genetics can be complicated and more studies are being done on this. While many who are diagnosed with Type 1 Diabetes may have no family history; research shows genetic factors play an important role in disease susceptibility. The pattern of inheritance is complex, and the development of disease is thought to be determined by an interaction between genetic predisposition and environmental triggers.

 

MYTH: People with Type 1 Diabetes shouldn’t have children –

FACT: Women with Type 1 Diabetes who manage their diabetes well during pregnancy can give birth to healthy babies.

 

MYTH: Type 1 Diabetes is the bad kind –

FACT: All types of diabetes are serious. Type 1 and Type 2 Diabetes being the most common types. But with proper management, people with diabetes can live relatively normal, healthy lives.

 

MYTH: Adults can’t get Type 1 Diabetes –

FACT: Type 1 Diabetes does not discriminate – it affects babies, children, teens, and adults. While type 1 diabetes usually develops in children or adolescents, diagnosis as an adult does happen. Which is why the name Type 1 Diabetes no longer goes by “Juvenile Diabetes”.


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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.