Think Twice Before Making That Diabetes Joke

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I decided to do a little experiment. I went to the mall and asked strangers a question,
“When I say the word ‘diabetes,’ what is the first thing that pops into your
mind?”

poster with people's answers to what word pops into their mind when they hear 'diabetes'

I got varied responses, but about half of the answers fell into the stigma. What is the stigma, you ask? The stigma is that people with diabetes are overweight, that people with diabetes ate too much sugar, that people with diabetes need to diet.

If we look at the things written down in the picture above, you’ll see about half of them appear to have a decent understanding. Yes, diabetes is an illness and a disease. Yes, for many it does involve needles. Some people thought of a family member who was affected. A couple of people even knew there was more than one type of diabetes.

So where does the problem come in? About half the responses included the word “sugar.” Most disturbingly, upon further discussion I learned this was literally all the knowledge some people had about diabetes.

I’m sure you’ve seen it before on social media. You see a picture of an indulgent dessert, and you click on the comments. “DIABETES,” someone said. You’re reading someone’s Facebook status and it reads, “If John had 20 candy bars, then Joe gave him 2, what does he have now? Diabetes. John has diabetes.” Again, you click on the comments to see that they’re full of “LOLs,” “HAHAHAs,” and praise for the hilarious joke. The thing is… it’s not hilarious. It’s horribly offensive.Diabetes is not a candy bar. Diabetes is a devastating disease that can happen
to anyone. It doesn’t matter if you have the healthiest diet on the planet and exercise multiple times a week. It doesn’t matter if you’re a professional athlete. Diabetes can happen to anyone, and it will change a life forever.

There are multiple types of diabetes, and none of them are OK to poke fun at. Type 1, which I have, is an autoimmune disease where the body attacks the insulin producing cells in the pancreas, leaving the body with no insulin production. There is no cure. Type 2 is a condition in which the body doesn’t produce enough insulin or the body doesn’t use the insulin it makes properly. Yes, extra weight can be a risk factor for this, however many other things can be as well, and you’ll find plenty of Type 2s who are not overweight. This is where genes come into play, and that is not something anyone can control.Life with diabetes is waking up at 3 a.m. shaking with a low blood sugar, stumbling to the kitchen and trying to grab something to treat it before you pass out. Life with diabetes is giving yourself injections, sometimes 10 times a day, or wearing an insulin pump. It is constantly working to make sure your blood sugar doesn’t go too low or too high. It is trying to prevent the devastating complications that can occur if you don’t take care of yourself properly. It is a full time job where one little slip up can cost you your life.

When you make jokes about this disease, you are adding to the stigma, which is already so widespread that correcting the world’s view on it is like moving a mountain. When you make jokes about it, you are trivializing the battle of children who cry at night because they don’t want to get another injection. And they’re going to have to repeat this for the rest of their lives or until there’s a cure.

So this is my plea to think twice before making a diabetes joke. This is my plea to educate people who only know the stigmatized version of diabetes. This is my plea to make the lives of people with diabetes a little easier to deal with and a little easier for the world to understand.

Follow this journey on The Pin Cushion Princess.

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Why I Cringe When Others Tell Me They’re Praying for My Healing

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Shortly after my diabetes diagnosis, family and friends flooded me with words of encouragement, prayers and gifts of comfort. Among the many stuffed animals and cards that I received was a CD series given to me by a well-meaning family member. The CDs included sermons by a prominent pastor along with a note stating that if I prayed relentlessly, recited scripture, and sought God diligently, healing would be mine. Now, at the age of 15, I identified as a radical believer. I had not yet experienced the seasons of doubt and philosophical questions that beset many teens and young adults. Instead, I religiously invited friends to Bible studies and services and dedicated myself to serving in various church ministries. Despite the faith I exuded, I was still taken aback by this religious gift and the notion that if I believed God hard enough, I would be healed of my diabetes.

My dismay did not come from a lack of belief, but instead from my family member’s subtle suggestion that the only answer to my diabetes diagnosis was divine intervention. I was frustrated by her sentiment that meaningful support meant suggesting I pray a little harder and exhibit more radical faith. Although it would be great to wake up with a well-functioning pancreas and though I wouldn’t mind God’s healing touch, that has not been my reality. I am a type 1 diabetic. Because of some genetic and/or environmental trigger, my immune system attacked my pancreas. My beta cells no longer produce insulin. And instead, I now rely on an external source for insulin and utilize a pump to shuttle glucose to various cells in my body.

Despite this major inconvenience, I’ve never viewed myself as someone in need of healing. Yes, diabetes is a chronic condition that bears the possibility of devastating complications. However, due to increasing knowledge and technological advancement, diabetics can live just as long as their non-diabetic counterparts. Telling loved ones that healing is near or encouraging them not to claim their disease does not support them in living well with their condition. In fact, I think these spiritual suggestions can dissuade diabetics from doing the practical and difficult, day-to-day work of managing their condition. Furthermore, these suggestions can lead to crises of doubt for those who are disappointed when healing does not come. It can also result in an unpleasant and devastating reminder that something is wrong with them.

For those looking to support me, who feel that prayer is their most effective display of support, don’t just pray for my healing. Pray for my discipline, pray that I’ll be strong enough to make healthy food choices and commit to staying active even when I don’t feel like it. Pray that I remain diligent in my glucose testing and in the taking of my medications. Pray for my peace, especially on days when unruly blood sugars and the possibility of complications have me consumed by anxiety. Pray for my motivation, so that when I wake up sick because of too high or too low blood sugar, or am plagued by management woes despite my best efforts, I find the strength to carry on. Pray that when I don’t feel like dealing with diabetes and am tempted to ignore my health, I choose otherwise. Pray that I am bold, so if I have questions or concerns I maintain the courage to ask my doctor or educator and/or do research on my own. Pray that I am honest, with myself and loved ones, so I can verbalize the type of support I need and also recognize when there’s room for improvement.

And pray for yourself. Pray that in dealing with me you are sensitive to my emotions and feelings regarding diabetes. Pray that you have the right words and exhibit the patience to address me lovingly when diabetes leaves me frustrated and overwhelmed, or even when severe glucose swings leave me irritable. Pray that when you have questions and/or concerns and want to support me but don’t know how, you have the courage to ask. Pray that if I allow your support, you won’t just nag me about numbers (A1Cs or blood sugars). Pray that you thirst for knowledge, so that you will also be motivated to learn about my type of diabetes and my management plan. Pray that when I feel defeated and am not having a good day, you stay clear of empty clichés. Genuinely encourage me.

And pray that your prayers have the power to propel action — action from me and action from you.

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Back-to-School Night With Type 1 Diabetes

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My son with type 1 diabetes starts kindergarten the day after tomorrow. He’s excited, and we’re excited. We anticipate a safe environment in which he’ll learn, grow, and be healthy. We’ve met and planned with the school, but just hours ago, on the walk home from back-to-school night, tiny cyclones of fear, worry, and jealously snaked inside me.

Back-to-school night with type 1 diabetes means a pile of glucose tabs, glucagon kits, test strips, extra insets, a ketone serum meter, airheads for the really low lows, spreadsheets of instructions, snacks with carbs, snacks without carbs, lancets, a back-up meter, and extra adhesive have been queued in your dinning room for a week.

Back-to-school night with type 1 diabetes means you walk your son to all the bathrooms closest to his classroom. You point out the water fountains along the way.Back-to-school night with type 1 diabetes is taking four times as long to drop off materials as other families because you have so many more items. In fact, when you’re dropping off supplies and signing form after form in the nurse’s office, the courteous mother behind you tells the staff she’ll be back tomorrow, meaning when they’re less busy. It’s realizing, in that moment, despite your two big bags of supplies, that you forgot the snacks with carbs, so you’ll be back tomorrow as well.

Back-to-school night with type 1 diabetes is walking the route between the nurse’s office and his classroom several times, just to make sure he doesn’t get lost. You realize it’s a trip he’ll make several times a day, and he’ll know it like the back of his hand in a week.

Back-to-school night with type 1 diabetes is rushing from work to the pharmacy so you can get the glucagon kits for school, and as you walk past the cashier to the pharmacy counter, you see a mother wave a purple glittery pencil box before she pays for it. You overhear her say to the cashier, “It’s back-to-school night tonight, and this is the last thing we need. We almost forgot about it.” A needle of jealousy pierces you, and you wish back-to-school night was just about pencil boxes and markers, a blithe almost forgetting of things. But then you remember to be kind because everyone is fighting great invisible battles. Surely living with type 1 has taught you that.

Back-to-school night with type 1 diabetes means looking at all the other boys and girls your son will most likely go to school with for the next 13 years and hoping they will be compassionate and understanding. But you’ve been a kid on a playground and in a lunchroom. You know kids aren’t empathetic and kind all the time. Back-to-school night with type 1 diabetes is hoping your non-T1D kid doesn’t feel minimalized as she waits for you to finish something diabetes related for the fourth or fifth time that day. She’d like to see her classroom too and asks if there’s still time to visit her teacher.

three kids walking to school

 

Back-to-school night with diabetes is forcing yourself to breathe as you walk behind this guy who is, and will, shoulder so much. You tell yourself you’re just sending your kid off to kindergarten, that lucky parents whose kids were born after the discovery of insulin 95 years ago and kids whose T1D is caught in enough time, get to do that — send their kids off to kindergarten.

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The First Time I Met Someone Else With Diabetes After My Diagnosis

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I had known him for many years already. We attended the same elementary school throughout childhood and had already completed the first two years of high school together. But I hadn’t really known him. Not the way I do now.

It was the year 2000. I was in grade 11 and I had just spent a week at the hospital learning how to count carbs, measure my blood glucose and inject insulin. Monday morning I walked into school, a little nervous about carrying this new diagnosis of type 1 diabetes and even more so about managing this new disease on my own. As I approached my locker I saw someone sitting on the floor, leaning against it.

Matt.

We had known each other for years and had been friends in a small-town, classmates-forever kind of way. But on this day his presence was significant. It carried meaning. Matt also has type 1 diabetes and he must have heard the news of my diagnosis because he was waiting for me.

I don’t remember our conversation that day but I do remember many points of connection from then on. Matt became a more consistent presence at my locker. He helped me struggle through the realities of living with this disease, he listened to me vent and commiserated with me about the frustrations of this life. We lent each other insulin when one of us would forget it at home, compared glucose readings at lunch, and took our shots together in the cafeteria. When it was time to upgrade to insulin pumps we shared rides to the hospital for all the pre-pump appointments, sat side-by-side listening to the nurse, and watched each other the first time we inserted our new infusion sets into our abdomens. At school we would pass each other in the halls and swap stories about other kids calling us robots or teachers asking us to remove our pagers while in class.

We were part of a tiny little club with rules that only we truly understood. As much as I felt a massive sense of loss for all the things my diagnosis had stripped me of, being friends with Matt added to my life. Diabetes wasn’t just about losing freedom and spontaneity. It wasn’t just an illness. It was an identity. It became a deep part of who I am and I can now point to gains in my life directly related to diabetes.

Most importantly though, Matt made sure I wasn’t alone. Although we have both moved away and moved on, I’ll always be grateful to him showing up at my locker that day.

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The Day My Husband Was Diagnosed With Type 1 Diabetes

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He had been unusually tired. For weeks, he complained of constant thirst and was drinking one soft drink after another all day and got up several times each night to go the bathroom.

He filled a bowl with ice cream and sat in his recliner. It was January 4, 1995.

I took a family medical book from the shelf because there was no internet, at least not yet, in our home. I flipped through to the index and located the section I was searching for. I turned to the page and read the symptoms to my hubby as he ate his ice cream.

Diabetes. I was familiar with type 2 diabetes; my father was diagnosed and managing it well. I suggested he schedule an appointment with our family doctor, and we went to bed.

Although he was tired and not feeling well the following evening, I convinced him to come with me to my parents’ home so we could check his blood sugar. When the meter didn’t register a number, I assumed there was a problem with it. He decided to stay at my parents to rest while I visited with them in the hospital where my mother had been admitted earlier in the day.

I left him and headed to the hospital across town. I pulled my dad aside and asked about the meter. He assured me that it was functioning just fine hours earlier, and he pressed me for more information. When I told him the meter just displayed “high,” concern swept his face. He called a nurse to explain, and I began making phone calls.

Our oldest hurried over to check on her dad. She was a nurse and knew his condition could deteriorate quickly. When her repeated knocking failed to get him to the door, she began to look for a way to break a window. He finally responded, and she rushed him to the nearest emergency room.

January 5, 1995, was the day that my husband was diagnosed with diabetes. At the age of 41, it was assumed he had type 2, but time and testing would prove that his pancreas had ceased to produce insulin. His diagnosis was updated to type 1 diabetesIt was a defining moment, first and foremost for him.

Our family circled the wagons. The glass pedestal that once held a freshly baked cake each week was tucked under a counter. Our girls began running with their dad. He was immersed in learning as much as possible about needles, insulin and testing supplies.

His life now centered on living “within the lines” — the safe range between low and high blood sugar.

I’ve shared a bit of his story, but I wouldn’t attempt to speak for him. He lives every day with the reality of diabetes. It’s his body and his to manage.

However, I live with him and his disease is woven into the fabric of our life together. If it were in my power, I would heal his body, not only of the disease but of the damage it brings. But I can’t and he carries on; we carry on because that is what a marriage is about.

I want to applaud him, actually. You know, at first single, firm, staccato claps that rise into an ovation. He deserves it. For 21 years, he has been determined to live life within the lines.

Are you wondering how that looks? Perhaps you’ve had a diagnosis and the landscape of your life is suddenly no longer recognizable. You are reeling. I tell you, you can do this.

As one who has watched from the grandstands and at times walked the edge of the pool for every lap of this life he now lives, I tell you that you can do this.

He has chosen to face diabetes head on and refuses to ignore it. He’s learned the weapons of his defense and he has employed them.

• He never, ever misses an appointment with his
endocrinologist.

• He always knows his A1C, and it has a target on it (it’s going down).

• He is on top of his blood sugar.

• He exercises and controls his weight.

• He embraces new technology and tools.

It’s not a perfect science. There are days when no matter what he does, the numbers betray his best efforts to manage and that day’s battle is lost. Diabetes is a tricky foe, but it isn’t a death sentence.

And there is so much hope! Twenty years ago, he carried needles and insulin in a cool pack along with a meter for testing. It was a literal lifeline, but it was so much baggage.

Today he wears an insulin pump that delivers a steady drip of insulin, much like his pancreas once did. His continuous glucose monitoring device constantly reports his blood sugar; not only that, it lets him know whether it is on the way up or down. It sends alerts to him and to me when his blood sugar approaches a dangerous threshold.

He endeavors every day to live within the lines; he chooses to manage diabetes rather than allowing it to define him.

I hope a cure will come someday, but in the meantime, take the offensive and live within the lines. I tell you, you can do it!

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To the Parents Whose Child Was Just Diagnosed With Type 1 Diabetes

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First of all, you need hugs. Please cry, get upset, grieve. I will cry with you as I spent many days crying over type 1 diabetes as well. But don’t cry in front of your child. Be strong. Be brave. Be matter of fact. Save the crying for later. 

No, it’s not easy. At all. But those shots that your child has to take is now life. Checking their blood sugar every few hours is your child’s life. And as a parent, it is now yours, too. And the best way to help your child is to take a deep breath, tell them it stings for a second, then it’s over. And do it. Quickly. Even with the tears.  

Get your child a new toy. Get them Band-Aids with characters on them. You know, the cool ones with Disney princesses or Pokemon. Better yet, let your child pick them out. Take them to a movie or buy a new Blu-ray. Because the fact is, this stinks and if you can make it a tiny bit more fun, make it fun!

Because you will forget it, buy an extra diabetes kit. And then buy an extra one after that for school. Just make sure the test strips work in all of them. Keep one on you and the other at home, in your car, anywhere you need it often. Did I mention lots of test strips and alcohol swabs?

You will find out who you can trust to help take care of your child. When you do, make sure you take time away from diabetes. Go somewhere — anywhere for any period of time — and challenge yourself not to count carbs or think about testing blood sugar. But keep your cellphone on you. Just in case. And smile when you didn’t have to answer a text or call.

Find a parent support group. Either in person, online or wherever. Go where you can ask questions, vent and do whatever you need to do with others that get it.

Find the right endocrinologist for you. Even if one seems good and has done a good job, if it doesn’t feel like a good fit, try a different one. You need to be able to fully trust someone who is leading you through this life. You want someone who can talk to your child and help them understand what they need to do in life. Notice I said “talk to your child.” Because even if you’re doing most of the care right now, they’re learning. Eventually, they’ll do it on their own. And they need to know how to do that.

It’s a lot. Believe me, I get it. You may be scared, overwhelmed and worried, and I’m sorry to say that will always be there. But it does get easier. And your child will feel better soon. And that is worth every single hard moment.

Follow this journey on My Life With Three.

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