Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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How do you handle unsolicited advice and judgements about T1D from family and friends? Cancel reply
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The advice and consent arena is teeming with tyros. And some of them fail to recognize they are dealing with pros. You are professional in this business if you work at it more than a month or two. And if you’ve got 5 years experience, you’ve probably got enough to qualify for the hall of fame. 👏
I usually say ‘I wish it were that simple’
Stare at them as if they just piddled on the carpet. Silently walk away. Unless one has only recently been diagnosed, there is no excuse for such stupidity. It is bullying.
If anyone tries to give me advice(very rare) I just tell them not to worry about me eating I know how to manage my diet
Most people don’t know difference between T1D and T2D. Even medical professionals. If they are receptive I try to educate a little. If not just smile and say thanks for advice.
Family and friends tend to ask questions, more than offer advice. I might have heard an, “oh, I didn’t know you could eat that.” To which I respond with, “Yes, I can eat this, as long as I calculate my intake.” Or, the occasional, “I cooked this without sugar for you.” Which I usually answer with, “thank you.” Then my wife says, “Oh, I put sugar in some things.” Then, I chuckle to myself. The unsolicited advice usually comes in a third party form, where someone tells me about another diabetic they saw eating ice cream or cake, who either died or went to the hospital. My response depends upon what mood I’m in at the time. 😉
My family rarely acknowledges my Type 1.
Wow. Why is that? Is it based on their fear? If you cannot get acknowledgement and support from your family of origin, I suggest you form your own support group.
If family or friends make suggestions, I take the time to explain why I have to do things the way I do. It’s a teaching moment. There’s no such thing as a stupid question. I’m amazed at how little ppl know about diabetes and equipment. After all I’m continually learning as well.
I know many have the reaction of getting perturbed/angry and after several years I may feel the same. But for now, I try to take it as an opportunity to educate on the reality of T1 and how to deal with it.
It really depends on who, where and when. If the question/comment is coming from someone who’s willing to listen I’ll educate them. If it’s a diabetes police comment, I say “thanks” and walk away. After 66 years of experience I still have many things to learn, but I’m the expert on the way my body reacts to various foods and social situations.
Second this (including the 66 years).
It depends on the situation. I have found most people are not interested in learning anything about t1- they really want to tell me about someone who died or is blind from diabetes. I say oh that’s too bad. If someone really wants to know about t1d, I will have a longer conversation. After living w t1d for over 53 years, I find I have little patience for people’s rude comments.
It depends on who and when it is. I’ve acknowledged & let it go, attempted to educate them and just ignored them. The hardest for me, is when a fellow nurse blatantly gives incorrect information to a patient – who then try to educate that nurse on the correct information but said nurse refuses to listen.
Kristine – Eegads! I hear you about nurses and other health care providers who haven’t received current and updated information in diabetes care and education themselves, who then try to give inaccurate and misguided information to patients in clinical settings. I have run into it many times in hospital and home care settings.
A really sad and dangerous scenario is when an educated PWD with sophisticated self-care knowledge has to put up a fight to defend the right to keep and use their pump and CGM with HCPs who are unfamiliar and/or untrained in use of diabetes technology. It becomes a matter of life and health, and in some instances can be a matter of life and death. I was in an emergent health concern situation (unrelated to diabetes) myself a few years back and the ER nurse labeled me as “non-compliant diabetic” because I refused to take off my pump and cgm.
I don’t hold it against people for not understanding diabetes. I was diagnosed at 18 y/o and was also blissfully ignorant going into this. As others have said, each question or comment is an opportunity to educate. I’m in diabetes research and could go on and on. They may get more than they bargained for!
After thanking them for their concern my response is “please do not tell me how to manage my health, I have it covered”.
Give them an “Official Food Police Badge” and laugh
I had no idea what the symptoms I was experiencing when I got it meant anything. Fortunately someone else did or I’d have been in DKA in a day or so, acc. to my doctor. So it doesn’t surprise me that other people are as ignorant of it as I was before I started HAVING to know something about it. More than I ever wanted to know, actually.
But I did answer that I try to educate people. Most of them are interested enough. Hardest thing is explaining how it’s the “medication” as WELL as the disease that are difficult to control.
It depends on how it is delivered. Sometimes I actually listen and want to research questions asked/ hypotheses delivered from a few, other times I inform them of what is currently being done, or just nod my head in agreement to have the missionary be quiet.
In my 57 years as a diabetic, I’ve not encountered a lot of advice from family and friends. However, when I do experience this, I listen carefully to see if there is something I am not aware of. Several times I other people have put me onto something that has been valuable to me. I will correct any misinformation and do a bit of education. Since I spent my career in medical education, I have a leg up on most people regarding knowledge of diabetes, and everyone is aware of that.
I acknowledge their feedback and concerns, ask them if they have any real questions or concerns that I can answer to help them understand what T1 diabetes is and how it differs from other kinds of diabetes, educate them about lifetime self-care responsibilities with T1 diabetes, and then let it go.
If they are truly interested enough to listen, they usually drop their assumptions, attitudes and fears about diabetes and say “Wow. I never knew that” and very seldom, if ever, interject unsolicited advice or judgements again.
Educate them by what you have learned or take them along to your Dr. apts. I listen to endo dept. people before family or friends. The big topic of confusion is the difference of Type 1 and Type2, LADA, and Gestational. In senior care facilities, diabetics are all treated the same regardless. The nurses run by charts and cannot do corrections of insulin.
Ummm… I accept they care even if uneducated. I’ll listen then include my experience, explain any inconsistencies. There are two Type 1’s in the family so the rest get to put up with our conversations.
The toughest for me though is twice 911 was called during low episodes, after levels stabilized was instructed to eat. Knowing if I argued or questioned the advise could be considered combative (many diabetics have trouble there) I went ahead and ate that carb rich dish. Then afterwards showed how my levels went so extremely high because of what I ate and how I had to SLOWLY lower the levels. But again it was my mistakes to have the need for their assistance (both times after a tough and rigorous 10-11 hour day at work).
Better than having folks terrified of being around me.
I educate them a little. What’s annoying is when they don’t believe me because they know all about diabetes since they saw “Steel Magnolias.” Aaaarrrg!
Some people think they have all the answers and don’t listen to logic or medical facts. Those people I say “thank you” and then ignore them. Some people are open to education on T1D and are interested in learning more.