I was diagnosed with type Diabetes (previously known as “Juvenile Diabetes”) at the age of 4 years old. It was a difficult time, as my older brother had several medical issues that kept us frequenting the local hospitals on a weekly basis, so some of my symptoms went unnoticed for quite some time. And by the time they WERE noticed, things began to escalate.
My weight started to fluctuate, I was having severe mood swings (worse than the typical 4 year old, I guess) and I started wetting the bed. Some of these might have been attributed to nothing, had I not lost consciousness at the breakfast table one morning.
I was rushed to the emergency room, where doctors diagnosed me with Type 1 Diabetes. My life suddenly became a flurry of medical appointments and training. I had to learn how to test my blood glucose and take insulin injections. I started to learn a rigorous dietary regiment and was restricted from eating many of things I saw others eating.
Although many people feel that it would be horrific for a four year old child to be diagnosed with this condition, it’s been 36 years since I was diagnosed and I’ve never known differently. Diabetes has become a part of my daily lifestyle.
Throughout the years, however, I’ve had to deal with a lot of stereotypes surrounding Diabetes. Even with all the literature available on the subject, not least of which includes the Internet, people are still ignorant of what causes Diabetes and what it takes to treat it.
Here’s the reality: Type 1 Diabetes happens when your own body’s immune system destroys cells in one’s pancreas known as beta cells. These cells are the ones responsible for the production of insulin within the body. Since these cells are destroyed and no insulin is produced, artificial insulin injections are required to maintain proper glucose levels within the body.
Now that the medical jargon is out of the way, allow me to share some of the worst lines I’ve heard from people (most of which are not, nor do they care for, someone with Diabetes):
“That has sugar in it. Should you really be eating that?” (The amount of sugar or glucose in food doesn’t matter, so long as you can balance the amount of insulin you take)
“I thought only fat or obese people caught Diabetes?” (This is an aggravating factor for Type 2 Diabetes, which is something totally different from Type 1. One’s body weight CAN affect blood sugar levels once you become Type 1, but is most definitely not a cause)
Back in the day, when I used to take insulin injections with a bottle and syringe, I had one of my professors walk in on me in the washroom. “Young man, are you taking drugs? And are you doing it while on campus?” (I actually got dragged out and brought to the college administrator’s office for that one until the matter was explained and cleared up.)
There are a lot of stigmas surrounding Diabetes and it continues to amaze me how most people don’t know the most basic facts about a condition that affects over 4 million Canadians.
I recently found an interesting website (www.getdiabetesright.org) that provided a list of Diabetes etiquette, which I find hits the nail on the head. It provides the information for people who DON’T have Diabetes. Here’s what it says:
- DON’T offer unsolicited advice about my eating or other aspects of Diabetes. You may mean well, but giving advice about someone’s personal habits, especially when it’s not requested isn’t very nice. Besides, many of the popular beliefs about Diabetes (“You should stop eating sugar”) are out of date or don’t apply to Type 1 Diabetes.
- DON’T tell me horror stories about your grandmother or other people with Diabetes you’ve heard about. Diabetes is scary enough, and stories like these are not reassuring! Besides, we now know that with good management, odds are good that you can live a long, healthy and happy life with Type 1 Diabetes.
- DON’T look so horrified when I check my blood glucose levels or give myself an injection. It’s not a lot of fun for me either. Checking blood glucose and taking medications are things I must do to manage Diabetes well. If I have to hide while I do so, it makes it much harder for me.
- DON’T offer thoughtless reassurances. When you first learn about my Diabetes, you may want to assure me with things like, “Hey, it could be worse; you could have cancer!” This won’t make me feel better. And the implicit message seems to be that Diabetes is not a big deal. However, Type 1 Diabetes (like cancer) IS a big deal.
- DON’T ask me “how my Diabetes is coming along.” The management of Type 1 Diabetes involves more than taking shots and watching what you eat. It is a complex balance of three things: insulin dosage, exercise and food. Growth, illness, stress, changes in activity level, changes in where shots are given and other factors can effect this balance. On-going adjustment is needed and my numbers will fluctuate (sometimes in extremes) every day.
- DO realize and appreciate that Diabetes is hard work. Type 1 Diabetes management is a full-time job I didn’t apply for, didn’t want and can’t quit. It involves thinking about what, when and how much i eat, while also factoring in exercise, medication, stress, blood glucose monitoring and so much more – each and every single day.
- DON’T try to find a “reason” that I have this disease. Type 1 is not caused by being overweight. It is not caused by eating too much sugar. It is not contagious. Children do not outgrow Diabetes or their need for insulin. Nothing that my parents did or did not do could have prevented the onset . Insulin does not cure Diabetes, it controls it.
- DO offer your love and encouragement. As I work hard to manage my Diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.
They say that every person is going through a journey no one knows about. I’m certainly not sharing this to make anyone feel sorry for me or to complain. But like with every other serious medical condition, education is the key towards understanding this one. For more information, feel free to visit http://www.diabetes.ca, http://www.getdiabetesright.org or visit the Juvenile Diabetes Research Foundation at http://www.jdrf.ca