What Not to Say to the Newly Diagnosed

Knowing the right thing to say is a great way to support people with diabetes.

| Nov 15, 2011

When I was first diagnosed with type 1 diabetes, I recall the numerous comments that people blurted out in an attempt to make me feel better about my situation.  But the truth was that I just needed to be treated like everyone else.  I was in the midst of a confusing, depressing, and life-altering diagnosis.  The last thing I needed was a pat on the back that felt more like a slap in the face.

If you know someone who has recently been diagnosed with diabetes, there are certain comments and questions from which you should refrain:

---"At least it's not cancer!"   Whatever the diagnosis, it's a really big deal to the person facing a medical challenge.  Minimizing the magnitude of the disease is degrading and disheartening.

---"They'll cure diabetes soon!"   A newly diagnosed person is trying to grasp the reality of the disease.  Right now there is no cure, only the option of managing the disease through diet, exercise, and medications.

---"Should you be eating that?"   A person with diabetes is, first and foremost, a person. Do not police their food choices, just as you wouldn't want anyone policing yours.

---"If anyone can handle this disease, it's you."  Although this comment is meant to compliment your determination, the reality is that no one wants diabetes.

---"My uncle has diabetes and had his legs amputated, and he's now on dialysis."  Diabetes has numerous potential complications, all of which you probably know about already.   Horror stories need not be shared, as they only discourage.

If you feel that you must say something, consider the following:

---"You are doing a great job managing your disease."   Recognize the tremendous efforts a newly diagnosed person is making.

---"Can you tell me more about diabetes?"  It's always better to ask than to make assumptions about a topic you do not understand.   By asking this question, you are validating the person's knowledge and demonstrating that you truly care.

---"Can I prepare any particular food for you?"   When hosting a meal, keeping the dietary needs of all your guests in mind----whether they are vegetarian, gluten-free, diabetic, or something else---is considerate. You can also host a potluck so that each guest can bring a dish that he or she is comfortable consuming and sharing.

---"What can I do to support you?"  Diabetes can be a daunting, all-consuming disease.   Rather than assuming that a particular action or comment is helpful, offering to support people with diabetes prompts them to suggest what they need.

 

 

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Categories: Complications, Diabetes, Diabetes, Diagnosis, Dialysis, Dietary Needs, Food, Gluten-free, Horror Stories, Life-Altering, Potluck, Type 1 Diabetes, Type 1 Issues, Vegetarian


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Comments

Posted by Anonymous on 15 November 2011

You are "right on" in this article. I have had type 1 diabetes for 47 years and everyone wants to tell you what to do or police what you do. This is something that I did not ask for, do not want, do not get a vacation from and can't get rid of. Non diabetics, health professionals and non health professionals alike DO NOT know,nor do they have a clue of how intensive the daily living with diabetes is and all the 24/7 calculations a person with diabetes has to do for exercise, insulin dosages multiple times a day, carbohydrate intake, stress, illness, planning ahead to avoid hypo or hyperglycemia, and the list goes on. This is not complaining, just explaining the complex and complicated aspects of living with diabetes on a daily basis. I would DARE any non diabetic to live as a diabetic person(complete with the financial expense, time commitment, blood sugar testing at least 4 times a day, multiple daily shots or insulin pump, treating hypo and hyperglycemia, doing all the daily calculations required and NOT getting the results that you worked so hard for) for ONE YEAR, yes, ONE YEAR, not just one day or hour. Any takers?

Posted by Anonymous on 17 November 2011

Great article! Did we meet the exact same people as you, after my son was diagnosed with Type 1? How are there so many insensitive people in the world! In addition to those comments, we also got "Oh Type 1 diabetes? That's nothing. It won't be that hard to give up sweets."

Posted by Anonymous on 17 November 2011

What a well written piece! I think all type 1's can relate to these "well meaning" comments. My personal best is the day I declined chocolate cake at work and the visiting donor asked why. I replied that I was diabetic. And because I am slim and she isn't, her immediate response was "oh I wish I was diabetic then I wouldn't eat cake". Needless to say I could not find the words to respond.

Posted by Anonymous on 17 November 2011

I actually had an endo tell me "at least it isn't cancer". I waited two hour to see this insensitive beast. Luckily I do have a super nurse practitioner who is especially supportive and believes in me.

Posted by carolynmcn on 17 November 2011

I am an "older" diagnosed Type 1 diabetic. I have no Beta cells in my pancreas. I do not produce any insulin at all. I am thinnesh and have been a healthy eater and exerciser all of my life. Imagine the number of people that cannot understand that there are people in their 40's who have come down with Type 1. I was diagnosed not long after a trip to the Dominican Republic. I was so sick there from the third day on. My endocrinologist is sure that this was the cause of my Type 1. I wear a pump but I find I am difficult to control. I eat the same thing every day for b'fast and lunch. Doesn't matter. Very frustrating and depressing.

Posted by goozer on 17 November 2011

I have been managing my Type 1 for 63 years. I have a friend who thinks she knows everything about how to manage this. She gives me advice all the time: shouldn't you... why are you... do this... do that... I finally had to tell her that I had been doing this very well and please, I can manage it myself. She still sneaks a comment in but quickly stops when I stare at her. And yes, we are still friends. I know she means well and is concerned.

Posted by Anonymous on 17 November 2011

I love this article and wish I could meet all of you for group support. I also have type 1 diabetes. I was diagnosed at 40 and I'm now 51. My friends are supportive (with the exception of one), but my family is not. I cannot eat anything without a comment. My brother in law's sister is well over 350 lbs. If she makes a "you can't eat that, it has sugar", I'm going to tell her "you can't eat that, you're fat". Seriously though, I no longer eat in front of my family. There is always a comment. Not just from the 350 lb. person, but everyone. It really sucks. The person who is daring other people to live with diabetes for a year, you are right on!! I'd love to meet all of you folks. You all sound like wonderful people. Hope all of you have a nice Thanksgiving and let's all have a nice piece of pumpkin pie!!

Posted by Anonymous on 20 November 2011

People need to hear the truth. This is a lifelong wasting disease that effects every single organ and no matter how well it's controlled you will experience complications at some point; unless you're in the genetically protected minority. There is no cure and there won't be until they know for sure what causes it. All this talk of interrupting the immune response is a joke and has not worked. No autoimmune disease has ever been cured as far as I know and if you believe we are "close to a cure" or even a better treatment then you are a fool and have your head in the sand. We still inject insulin sub-q which is harmful and physiologically incorrect. The artificial pancreas is a total joke and will only benefit a small minority. If you enjoy wearing multiple catheters for the rest of your life, spending exhorbitant amounts of money, and battling with a CGSM for delayed inaccurate results, then the AP will be for you. My family has over 100 years of combined misery with this disease. I will be cured when I'm dead! That's a fact.

Posted by Mother and Wife on 28 November 2011

I just have to echo the readers who commented before me-- excellent article! My husband got diagnosed with T1 just after we were married in 1991. He was 24. Last year, our 13 year old daughter was diagnosed.

You might wonder if her familiarity with the disease made coping with the diagnosis easier or worse. As her mother I would have to say that the answer is -- both. In addition to hearing some version of every example you listed, she also got the -- "well, it's genetic so you were probably prepared" and/or "you will be fine; it's no big deal-- your father is fine with it" (that one actually came from an MD on the day she was diagnosed). While it is true that she has a good role model (since being diagnosed he completed a top-tier MBA, ran multiple marathons, achieved success in top fortune 500 business and, of course, played "super-dad" to his three great kids or being a hands-on super dad), she has also witnessed the reality of low blood sugars which can be expecially frightening from a child's point of view. There is no 'one/right' way to react, prepare or process a life-changing diagnosis like Type 1 Diabetes. My daughter has already taught me that it is possible to be both sad and strong at the same time. From those of us who are trying to support-- thank you for the reminder.

Posted by Anonymous on 25 December 2011

Shortly after being diagnosed type 1 at 14 I was at a family get together with my aunt who works at a nursing home with type 2 diabetics. After finding out how many carbs were in the meal we were about to eat and checking my BG, I dutifully prepared to take my insulin. My aunt literally told me "no" I could not take the insulin because she was a nurse and her patients did not take insulin before meals only 1 shot at bedtime. The situation ended with my dad saying well maybe shes right, shes a nurse after all. I was crying and had to wait for her to go away and went to the bathroom to take my shot. When I look back I think how horrible for such a young girl trying to take care of herself.

Posted by Anonymous on 2 March 2012

The food police have got to stop.

First, they don't understand the issues unless they are themselves dealing with a blood sugar problem. And you won't see people with diabetes food policing.
Second, we don't need parents. We have those. We need support, not nagging
Third, we know our bodies. We know what we can eat, what we can't and what to watch out for. You don't. So leave us alone about it, thank you very much. Like myself - rice will spike my sugar, but that muffin? No, it doesn't hurt a bit.
I could go on and on.


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