Offending ‘Miss Manners’

 

BGCheck

Earlier this week advice columnist Judith Martin, whose Miss Manners column is carried by more than 200 newspapers worldwide, responded to a reader’s question regarding whether or not those with diabetes should check their blood sugar in public settings.  Her response was a column entitled “Do Diabetic Testing in Private” and included the following paragraph:

Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such.

As a father of a child with type 1 diabetes, I felt I needed to respond to her and, after writing, decided my message should be shared publicly with all of you.

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Dear Miss Manners,

I read your recent response to the gentleman inquiring about testing his blood in public. While you are certainly entitled to your opinions, your response shows  ignorance and lack of education about type one diabetes (T1D), as well as a lack of compassion for those living with T1D and their caretakers. As a father of a three and a half year old with T1D, I must say that I was completely appalled by your response.

My daughter, Isabella, was diagnosed with T1D in August 2012, just two weeks before her second birthday. She spent four long days in the hospital after her diagnosis while the doctors pumped her tiny body full of insulin. During that time the doctors and nurses educated us about type one diabetes, an autoimmune disease that we knew nothing about until that moment. We learned that had we not caught some of the symptoms early on, our daughter may have slipped into a coma or worse in a matter or days. We learned that our daughter’s life would never be the same. We also learned that we would have to check her blood glucose levels at least 8-10 times per day, count every carb that she consumes and give her insulin injections at least four times per day.

 This became Isabella’s new “normal” life. What we know, and you likely do not, is that failure to closely monitor her glucose, properly count carbs or administer precise amounts of insulin could ultimately lead to our daughter’s death. Therefore, I view every single moment of every single day (awake and asleep) as an emergency. Our daughter’s life literally depends on frequent blood checks and insulin. We have always checked Isabella’s blood in public and administered insulin injections in public, as well. We have always taught Isabella that T1D is a part of her life and she should never be ashamed or embarrassed about it, nor ever let it define her. And, even at three and a half years old, she has embraced her diabetes, checks her own blood sugar and loves talking about her diabetes with anyone that will listen. We would never suggest that she stop doing any of those things because there is a chance that it might make others uncomfortable.

Isabella now wears an insulin pump that is physically attached to her body at all times. We are often asked about the device, which gives us an opportunity to educate others and raise awareness at the same time. I would never even think about covering it up simply so that no one else can see it (so they don’t become uncomfortable about my daughter’s diabetes, I suppose, according to your logic).

The reality is that Isabella is different than other kids, including her triplet brother and sister….however, we would never make her feel different and ashamed by hurrying her off to the restroom every time we have to check her blood sugar when we’re out in public. We believe it is extremely important that she is completely comfortable talking about her diabetes and the effects it has on her life, physically and emotionally, now at only three and a half years old and as she gets older.

We want Isabella to share her story with the world. As her parents, that’s exactly what we have been doing for the past year and a half and will continue to do so until a cure is found for our daughter and millions of others living with this terrible disease. I can assure you that observing a simple finger prick is nowhere near as uncomfortable as what my daughter and millions of others go through every day of their lives.

Your column only motivates us even more and reminds us that we still have a lot of work to do to educate others and raise awareness.

-Greg Dooley

www.InspiredbyIsabella.com

Comments

  1. BOOM.

  2. I wonder if she would to say that to someone who needs a wheelchair… “please don’t show that you need a wheelchair to get around” it might offend someone so stay in the bathroom or stay home. And the idea that a bathroom is a place to do a finger poke is atrocious. THE GERMS! Shame on you, Miss Manner. Why don’t you go into the bathroom to eat, I am offended by the way you chew your food.

  3. I have had type one for 41 plus years; there is a happy medium. In public, I go to the men’s room to test and shoot up my insulin unless I’m with close friends who are not phased by these processes. I also do it on a plane if I am not in the aisle seat. Otherwise, I try to do these things in privare. I would remind Mr. Dooley that diabetes is part of his daughter’s life,not all of it; teach her to control it, not it to control her. And relax: she and you can have good control without being so tense about it.

  4. Mr. Dukes, I do not have Type 1, so I am not in the same position as you. However, my 13 year old daughter was diagnosed with it 19 months ago. I 100% respect your choice to be “modest” with your testing, but I think its something over which you should have a choice; I don’t believe anyone with T1D should feel compelled by “manners” to test or dose/bolus in secret. As a parent facing the upcoming teen years I am terrified that my daughter will become non-compliant in her care. From all that I have read, I believe this is common. Even now, when she is out with her friends, she often won’t test her BG because she doesn’t want to be “different.” If anyone ever told her that testing her blood sugar in front of others was somehow impolite (something I have a hard time understanding, by the way) and that she should find a bathroom to do it, she simply wouldn’t test. I think this columnist was irresponsible in what she said (though to be fair, I haven’t read the article itself, only what those that have read it have said). I don’t need my daughter to feel any more out of the norm than she already does.

  5. I personally didn’t appreciate that Ms. Manners pooled treating diabetes in with taking care of ones bodily functions. I don’t see the correlation between good glucose control and gaseous expulsions. Worlds apart Ms. Manners, and if you don’t see the difference and wish to impose your beliefs on others at the risk of their health I think you need to point that little impolite finger right back in your own direction.

  6. Dear Eliz4142: I do wish your teenaged daughter the best, and I don’t envy what lies ahead for either of you.I suppose I was/am thinking of others when I said I what I did and do what I do. All of this is relatively small beer compared with the day-to-day business of dealing with Type I. I know that the parents of many teenagers have the problem of their children’s noncompliance, and I know that convincing a rebellious teen that good control can make all the difference is very, very hard. Very best of luck to you both!

  7. As the parent and wife of 2 type 1 diabetics, I believe the crux of her insensitivity lies in her ignorance to the HASSLE this disease already is without her suggesting that we add another burden of removing ourselves to a private location in which to manage it. Miss Manners, you must truly not know the steps those with type 1 diabetes already have to go through all day long, every day of every week of every year in addition to the hassles supplied by life in general. It feels cruel to those of us that live with this that you would expect us to add another requirement to our obligatory daily routines – routines we follow just to stay alive and healthy, and all just in order to keep your world candy-coated and bereft of having to think about the special needs of others. To prioritize your wish to not witness blood sugar testing over our burden of having to remove ourselves to do it….how shallow….how cold, and…..how RUDE!

  8. Well written Greg! I appreciate you standing up and communicating the importance of making your daughter feel just like every other child. No one truly understands what Type 1 diabetes is all about until they have a family member living with it day in and day out. As you know it is TRULY 24/7 management. We have many challenges ahead of us but with creating an atmosphere of normalcy for our young children it will make all the difference. I will continue to educate as many people as I can about this terrible disease and continue to ensure my 3.5 year old daughter Addison feels just as normal as she should living with Type 1!

  9. George Michaelson says:

    Your letter makes clear that you don’t read Miss Manners very often. But regardless, she’s right. If there is a private way to do a medical application that does not cause great inconvenience, etiquette dictates that it should be done in private. Your daughter may be quite special, but newsflash, everyone has issues and troubles, whether physical or mental. I have issues, including a physical deformity, that I don’t expose others to, because it’s proper to present myself as a normal person. We all have issues, we just don’t tell you about them and demand everyone to treat us as special. So take care of your issues in private if at all possible. It’s basic respect for others to do so.

  10. I have to agree with Whitney. As a type 1 diabetic for 18 years, just daily life is a HASSLE. If I had to get up and go to the bathroom every time I had to test my blood sugar, I wouldn’t bother to do it. Which puts my life and the lives off all those around me at danger of disruption. What would you rather see: a diabetic taking minimal steps to ensure their health, or having that same diabetic shamed and thus having the possibility of an ambulance crew interrupting your peaceful life? Not to mention that living with and auto-immune disease puts me at a higher risk of infection due to a suppressed immune system. I don’t venture in to public restrooms if I can help it, especially if I need to prick my finger or inject insulin.

  11. Kimberly Permenter says:

    Oh, George, you are way out of line. This is NOT about an obligation to create the illusion of normalcy in public. (I’m sorry you believe that to even be necessary… I’ll let you work that problem out with your therapist…) If more people would accept others’ differences instead of judging them for them, this world could be a much better place. We could stop trying to hide who we really are. There’s no shame in being a senior citizen… or hearing impaired… or an amputee… or a stutterer… or single… or pregnant… or quadriplegic… or diabetic. Redefine your concept of “normal” to include real people.

  12. I totally agree with you Kimberly. George you are comparing apples to oranges you idiot! If a diabetic waited to get to a restroom or private place to test a blood sugar or give an insulin injection they could be in serious danger. I say as diabetics, parents of or wives of diabetics we do what we have to, when we have to and where we have to. DON’T let anyone make you feel uncomfortable for taking care of yourself!!

  13. Amen

  14. Use some common sense, i.e. not in a fine dining restaurant.

  15. George. You have so little understanding of physical conditions that require constant monitoring You may have your issues, and I am glad that they are issues that you can comfortably keep hidden. I don’t believe that any parent of a T1 child wants their kid to be treated as “special”. They are amazingly brave with what they face day to day but we don’t want them to be seen as “different”. We want them to feel normal and accepted because they are. Their normal may be different to yours, but they don’t need to feel like they are being shunned because of the medical stuff that they need to do to keep themselves alive. It is not like counselling or any mental health treatment. It is necessary to keep them alive. Maybe you could work with your therapist to become more accepting of people who suffer physical ailments instead of feeling somehow “better” than them. You see your therapist and take medication to keep yourself alive. Some people have to face much more rigorous and physically demanding regimes to do so. Lets accept all. No one is more special than anyone else. Why can’t we just accept that

  16. I’m a Type 1 and I used to hide everything so I didn’t make other people uncomfortable. It took me a while to realize that now I really don’t care what people think and I’m more proud to show off my pump and CGM that helps me manage my disease. My daughter 17 is currently being tested for Type 1 or reactive hypoglycemia and has had to check her blood sugar regularly. Her Dr gave her a note to give all her teachers at school that clearly states she may need to check her BG or eat in class if feeling low. One day she was not feeling well in class and took out her supplies to check her BG. Her teacher walked up to her and told her to go do that in the bathroom. I was so proud of my daughters response. She said “she didn’t feel comfortable walking to the bathroom to test and being alone because if she was having a low blood sugar she needed to eat and she didn’t want to pass out in the bathroom and be alone. ” When she got home and told me this I was so upset with the teacher. As Greg states above that people just are so uneducated about this disease and we need to take every opportunity to educate them. I will never let my daughter be ashamed or have to hide her supplies to test. If they don’t like what they see, DONT LOOK!

  17. Bravo Greg! I couldn’t agree more. Your daughter has a great advocate in you. My Type 1 diabetes arrived at a late stage in life… 47. I’ve been adjusting and dealing with it for 3 years now and this topic has come up several times. I used to whisk myself off to the bathroom in the beginning, but I soon realized that was not necessary. I do, however, try to test my blood or give myself a shot in as much of a camouflaged way as possible. For example, in a restaurant I’ll test my blood on my lap (vs. setting everything on the tabletop). If I need a premeal shot of insulin, I’ll just subtly do so while sitting there and maybe turning to the side. I don’t feel a need to get up and walk to the bathroom any more. I feel as long as I’m not making a big production out of it no one else should. It’s part of life for a diabetic.

  18. Thomas Dukes says:

    Dana, I very much appreciate your consideration for others. As I noted in my earlier post, I found a happy medium, and you have, too. Just as we must take care of our needs, we must also be considerate of others. Tom

  19. Miss Knox says:

    Isa could teach a few “older” diabetics a thing or two… No longer are the days where we let it control our lives and she is the prime example of this. At 3 years old I watch her take control of her diabetes, test her own sugar, work her own pump (as much as us nervous nelly teachers will let her), teach her peers and their parents about being diabetic, all while being a totally “typical” 3 year. Isa never let’s her diabetes bring her down, she take pride in it and her classmates now all not only love watching her test to see where she will be they get very concerned and help take care of her when her numbers are off. I could only wish I had the understanding of diabetes that she has given her peers, so many people have no real understanding of what it really means to be diabetic I myself was one of those people when I found out 10 years ago that I was in fact at 19 T1D. I believe if people understood diabetes better this topic wouldn’t even be up for discussion, let’s face it a diabetic not testing or taking insulin would be like not giving a choking person the Heimlich, we need it to live we depend on it to live. I would like to remind people that no one chooses to be type 1 diabetic it’s the cards we are dealt, and we are just trying to enjoy a meal out like everyone else at the restaurant.

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