Or, what not to say to a type 1 parent or person with type 1. Here are some I have experienced, as well as some I have heard from others.
1. Should he be eating that? Yes, he can eat anything you can. He just has to calculate and inject for all carbs. Don't be surprised if you get the response, "Why, is it poison?"
2. Has he stabilized yet? Type 1 diabetics are never stable. There are hundreds, if not thousands, of factors that affect blood sugar levels. We count carbs, calculate, test, and inject. If numbers are too high, we correct. Too low, we treat. But he will never have "stable" numbers. Every day is different.
3. I could never give my child shots. Yes, you could. If their life depended on it, I assure you that you could and would.
4. He takes insulin, so he's fine, right? Insulin is a treatment, life support. Not a cure. As long as we calculate everything right, and none of the many unknown factors interfere, he is ok. But things change very quickly some days.
5. It could be so much worse/at least it isn't cancer/at least it is treatable. This one doesn't bother me personally, but I hear it really bothers lots of d parents. There is even slight disagreement within our household. Best not to say it.
6. Wouldn't he be better if he had a pump? A pump is one method for delivering insulin. It has advantages and disadvantages. It's not a cure.
7. Oh, he has a pump. He must have a bad case. See #6, and there is no "bad case." A pancreas that doesn't produce insulin is bad. Period.
8. Does he have the bad kind of diabetes? See #7.
9. He'll grow out of that, right? No, he will have type 1 diabetes and require insulin the rest of his life, or until a cure is found.
10. Can't they just do a pancreas transplant? An organ transplant is MAJOR! It would be a trade-off of insulin for anti-rejection drugs. Those drugs tend to have some pretty powerful side effects. Sometimes a pancreas transplant is done with a kidney transplant if a patient is in kidney failure. Plus, unless the autoimmune disease is cured, type 1 could return after a transplant.
11. If he loses weight and controls his diet, he will be ok. Untrue. There is no amount of diet and exercise that can control type 1 diabetes. It requires insulin, and even then the disease is not controlled. It is simply managed, one number at a time.
12. So, he's had this his whole life and they just now found it? No, type 1 diabetes is an autoimmune disease that can develop at any time. It occurs more often in childhood and adolescence, but type 1 can develop in adults as well.
13. You get used to it, right? Um, I'm not even really sure how to respond to this one. I'm not sure you can ever get used to the fact that your child has a chronic, life-threatening illness. We just hope to get better at management. And we pray for a cure.
14. How do you have diabetes? You aren't fat! What can I even say about this? Other than being rude, weight is not a factor in developing type 1 diabetes. In fact, most type 1s are slender.
15. Who else in the family is a type 1? There is not always another family member that is type 1. Some families have several type 1s, other type 1s have no relatives with the disease.
16. So, he can't participate in sports? Actually, exercise is good for type 1s, just like it is good for everyone. Activity helps the insulin work more efficiently. There are many Olympic and professional athletes that are type 1.
17. Isn't he kind of old for being diagnosed? I thought it was a childhood illness. Type 1 is most often diagnosed in children, but can develop at any age. I read about a woman in her 60s being diagnosed recently. Type 1 diabetes does not discriminate.
18. What did you do that caused it? There is nothing that a person does to cause it, nor can anything be done to prevent it. It's an autoimmune disease that just happens.
A couple of other things Seth has heard. No mythbusting here, just statements and responses:
19. Do the shots hurt? Seth: They're better than being dead.
20. I wish I were diabetic so I could eat a lunch like yours. (Seriously, a kid said this to him at lunch.) Seth: No, you don't. You can eat anything you want without doing this (as he jabbed the needle into his tummy). Just bring what you want for lunch.
Most of these things were said by well-meaning, but uniformed, people. This is a serious disease that requires constant attention. We are learning more every day. One day, we will KDA.