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26 Responses

  1. Arielle
    Arielle August 27, 2010 at 6:27 am | | Reply

    I don’t think it’s necessarily dangerous to be around people who don’t know you have diabetes, but consciously hiding it from a romantic partner seems bizarre. I think people assume that talking about it means a serious conversation and a big reveal, but for me it’s always just come up naturally in conversation. I don’t usually tell people I work with that I have diabetes, but I don’t hide testing my blood sugar or using my pump either. Usually someone will see me testing and say “Oh! You have diabetes?” and I’ll say “Yes, I do,” and that’s either the end of it or they’ll tell me about their best friend who also has diabetes, which is always nice.

  2. Scott Strange
    Scott Strange August 27, 2010 at 6:27 am | | Reply

    Seems like a lot of work to me as well. I’m usually not very shy about diabetes, esp if someone asks for two reasons:

    1) I really don’t give a damn what most people think about me and the ones that I do give a damn about don’t care that I have D

    2) I figure the more people around me that know I have D, the better my odds of survival are the next time I screw something up

  3. Karen
    Karen August 27, 2010 at 7:04 am | | Reply

    I will never understand hiding this disease – it may not define me, but it’s as much a part of me as my preference for half-and-half or Pepsi over Coke.

    I’ve been upfront about it with friends, family and even strangers since I was diagnosed as a 15-year-old. I was confused when my very first CDE was talking about how I could go to the bathroom if I wanted privacy for injections. “Why would I want to do that?” I wondered. “It’s not like I chose to be a heroin addict or something. I shouldn’t be embarrassed about this twist of fate.”

    Also: the comments on the Globe piece were really, REALLY aggravating. There’s so much ignorance in the world.

  4. k2
    k2 August 27, 2010 at 7:54 am | | Reply

    Hey Amy!
    I’ve never been a “shrinking flower” as far as my diabetes is concerned – It’s as much a part of me as my hazel eyes & freckles. And those that know me know I always tell it like it is, diabetes or otherwise.
    As far as dating, when the time is right, I bring it up. It’s usually after the first few dates and it’s never sent a man running for the hills.
    And now that everyone “Googles,” I couldn’t hide my diabetes if I wanted to, because it’s out there for all the world to see. And if truth be told, I wouldn’t have it any other way.
    Kelly K

  5. Bernard Farrell
    Bernard Farrell August 27, 2010 at 8:19 am | | Reply

    I’ve always been very open about my diabetes, so I can’t even get into the mind of this writer. I agree that his approach to life seems misguided at best.

  6. Matthew
    Matthew August 27, 2010 at 8:26 am | | Reply

    When I was young I would hide my diabetes from everyone but my friends. I remember when I was seven an older “bully” used to laugh and say “You have diabetes” and in an embarrassing and futile meeting with the principal to get him in trouble all she said was “I can’t get him in trouble; I believe you shouldn’t keep this a secret. But stop laughing at him it’s not funny” Once I attended diabetes camp and realized how everyone else dealt with it I learned to not be ashamed. After all, it really is just a freak mutation and chance. And on the contrary, testing your glucose can be a great ice breaker.

  7. Allison Blass
    Allison Blass August 27, 2010 at 8:53 am | | Reply

    Hiding your diabetes means that you think that having diabetes is 1) bad or 2) something that makes you unlovable. This is not true, and keeping diabetes a secret just feeds into that. I would rather bring up diabetes early to prevent someone from thinking “Well, if he kept it a secret, maybe there is something I should be worried about.” Most people I have dated in the past knew about my diabetes before there was even a thought about a first date (my first kiss was, in fact, from the son of the then President of the Oregon/SW Washington Chapter of JDRF). At this point in my life, too much of what I do with myself is surrounded with diabetes activities, so it’s bound to come up, though lately I haven’t had to say much. Erik is plenty willing to brag about how wonderful he thinks he my diabetes blog is! :)

  8. Kassie
    Kassie August 27, 2010 at 8:53 am | | Reply

    I think Karen’s comment sums up the why: “there’s so much ignorance in the world”. It can be scary to put information about yourself out there that might deter a potential girlfriend/boyfriend. Heck, we have bloggers like ‘wife of a diabetic’ shouting to the world: Don’t marry a diabetic! It’s too much work!

    The globe writer kept it quiet for a month, and it sounds like it worked out well for him (he was finally comfortable bringing it up, she was receptive and curious). So, I don’t think any of us are the right person to judge how anyone else handles disclosing their medical conditions – that’s something we have to navigate according to our own needs.

    I think that those of us who found love with our diabetes out in the open (or those of us whose love was well established before diabetes came into the picture) are pretty lucky to not have had diabetes complicate our romance.

  9. riva
    riva August 27, 2010 at 9:12 am | | Reply

    In the early years (38 years ago) I hardly mentioned it. It was too big and few knew anything, especially about type 1, and it seemed so hard to explain so someone would get it, so why try. Of course now I only bring it up as relevant – neither hiding it nor boasting – but I secretly relish when doing something, like taking a shot or testing my blood sugar, and someone notices. Any opportunity to shed light on diabetes or teach someone something gets my jets going. The funny thing is I can be sitting in the middle seat of an airplane, testing my sugar, taking a shot, and no one notices!

  10. Karen
    Karen August 27, 2010 at 10:27 am | | Reply

    As an adult, the thought of hiding it seems almost unimaginable – especially since finding the D-OC and being a part of such an open and supportive group.

    Yet as a teen – a shy, socially awkward teen who never really felt like she fit in – diabetes was definitely something to hide. It made me different, and back then different felt bad. Also, diabetes itself was different at that time. Before pumps and MDIs and regular finger sticks, diabetes was easier to hide. Because sugar was still taboo, if I wanted that ice cream bar at lunch it was important that nobody knew I wasn’t supposed to be eating it. Back then, I thought diabetes was something to be ashamed of and I hated it.

    Yes, it was a lot of hard work to keep it a secret. It makes me sad that I felt I had to, and I’m glad to have grown up and realized living with diabetes is something to be proud of instead!

  11. Gregg Milliken
    Gregg Milliken August 27, 2010 at 11:24 am | | Reply

    ShaBam! Wow when I was meeting people, the best way to let people know about myself was to get to know them. I found most people had medical history! Hello,, who does not have a trama story, as babies we were often sick. Ear aches, stomach issues ect… People often portray themselves as the icon of health, but it is somehow a way of believing or denial of how vulnerable they are to having a health issue. I found many folks were either over bearing and negative about their health,or in total denial.Balance is King we are very complex and we should share our Diabetes in an arena of support. I think at times people are shocked because the disease is still very misunderstood.

  12. Elizabeth
    Elizabeth August 27, 2010 at 11:40 am | | Reply

    I was already married when I was diagnosed (type 1, just about 4 months ago), but I can’t imagine that I wouldn’t bring it up pretty quickly if I actually thought a relationship might develop. I would probably play down the severity of diabetes to avoid scaring them off for a while. Lightly mentioning up front that sometimes my BG gets low and makes me really disoriented, and that means I need sugar ASAP seems a reasonable level of up-front education, but I certainly wouldn’t introduce them to the glucagon kit for quite a while!

    I think I’d feel the need to prove to them that I’m healthy despite my diabetes, and that I’m proactive enough to prevent scary problems. Not saying anything at all then going into a diabetic coma on a date would probably be more of a deal-breaker than, “Hmmm, I feel lightheaded, let me take a second to test and see if I need some candy.”

    And I suppose a particular concern, for me, is that it’d be a little tougher to hide an insulin pump (compared to supplies for injections) if a date got… interesting! I’d rather say, “Yeah, I have to count carbs because I’m a type 1 diabetic, but I have this cool gadget that makes things way easier! It can just pop right on and off at my waist, see?” than explain it when it’s just about to be discovered!

  13. Meg
    Meg August 27, 2010 at 12:10 pm | | Reply

    I was already married when I developed Type I, so never had to decide when to tell a date. Now I only rarely tell anyone – people without diabetes don’t seem to get what Type I means. It ends up being an invitation to the “diabetes police” to be on the lookout for transgressions! Or I get to listen to a long story about how you can cure diabetes with some strange diet.

    As far as injecting in public, unless it can be done discreetly, I wouldn’t do it. Nothing to do with being ashamed of being diabetic – just too many people are totally creeped out by needles. It’s not something you really want to see in a restaurant.

  14. marie
    marie August 27, 2010 at 12:58 pm | | Reply

    I have lost at least one long term relationship over it, even though I was upfront about it in the beginning (first or second date). In the end it was too much for him to handle (much to my surprise and disappointment). I can understand the desire to not bring it up right away. And is my date required to tell me that he has high cholesterol or a family history of Parkinson’s? I don’t think anyone is obligated to reveal it initially. But obviously it is a condition which significantly impact both partners in the relationship, so I wouldn’t hold off on sharing it for too long, either. Usually once someone has my first and last name, the jig is up! I usually let it make its presence known after the first few dates.

  15. June S.
    June S. August 27, 2010 at 7:11 pm | | Reply

    I am horrified by what I just read in Joseph Pierandozzi’s article. It’s not only upsetting that he waited SO long to tell his girlfriend about his diabetes, but his attitude is awful. How long does he think he is going to get away with eating and drinking what he wants, and smoking. I smell TROUBLE!

    I once met a guy through a dating service who “fessed up” about his diabetes the first time we spoke on the phone. Since he mentioned it, I asked him if he had any complications. He said “You name it, I’ve got it.” I told him I could guarantee we’d never get along, because at the time (before my CGM) it was not unusual for me to test my BG twenty times a day, on a bad day!

    I felt really bad for him, and it’s true I might have dated him (a first date, at least) if he HADN’T told me he had Type I diabetes, OR if he HAD told me, but if it had been apparent to me that he was doing his best to take care of himself. In my book there are compliant and non-compliant Type I diabetics, and I am not well-suited to the latter type, since I am the former type!

  16. Sysy Morales
    Sysy Morales August 28, 2010 at 12:36 pm | | Reply

    I’ve written about this topic before because it does seem odd for most of us diabetics who are very open with our diabetes. Diabetes isn’t glamorous and so I can understand why someone might want to hide it. The reality is that it is too big and too important to hide. On dates I would be very discreet yet I’d still be open about what I had to do.

    I was happy to eventually marry the guy that always listened to what I had to say about my diabetes. I can honestly say that he literally listened to HOURS and HOURS and HOURS of diabetes stuff from me in the 2 years we dated.

    When a person finds “the one” diabetes won’t take anything away from the romance of dating. My husband and I had plenty of romance and excitement and some of our best stories (some we’ll have fun sharing with our kids and some we won’t be able to share) have diabetes at the center of the tale. So go figure? I think diabetes is a test for our significant other. I kind of liked having such a clear way to see how invested in me my guy was and still is, no matter what baggage I come with.

  17. Katie I.
    Katie I. August 28, 2010 at 5:33 pm | | Reply

    Amy, ouch, that sounds a little judgmental! I am pretty much in-the-closet with my T1, and have been for years. Those close to me know, but most of my friends and coworkers don’t. This is a result of the reactions I got from people when I was growing up (I was dx’d at age 6)– I constantly heard “you have the bad kind, and you must not be in good control if you have to wear that thing [my pump]“; “are you sure you can eat that?”; “my grandma had diabetes and died after her kidneys failed/her leg was amputated/she went blind”; etc. And if I haven’t seen someone who I knew from childhood in years, and I randomly run into them in my hometown, the first thing they ask is, “how’s your diabetes?”
    I’ve heard from many people who were diagnosed more recently (like you) that we should all be very public with our D, so that we can educate the masses. In my experience, this is unfortunately very unrealistic. The vast majority of people I’ve encountered do not listen to a thing I say about my T1. They are convinced that they know more than us, because their grandma (or someone else they know) had a different experience with D, or they learned about it in school (decades ago), or their mom is a nurse and told them that if you have D, you can’t eat anything with sugar, etc… So it’s just easier to keep our mouths shut, in my opinion. These days, you might get a polite response from people after “educating” them, but trust me, down deep, they are usually convinced that they’re right, and you’re wrong. This is obviously infuriating if you have D. So my opinion is, why bother? But if you want to be out of the closet with it, I don’t take offense to that, because everyone’s different. To each his/her own.
    I really hope that I misinterpreted this post, and that you’re not really trying to judge people! :(

  18. AmyT
    AmyT August 29, 2010 at 8:27 am | | Reply

    @Katie – please re-read the second-to-last paragraph of this post. I realize that I am viewing Joseph’s choice from my own personal perspective. Thus, the asking of the community to share their views. Thank you for your honest input!

  19. Michael Ratrie
    Michael Ratrie August 30, 2010 at 8:25 am | | Reply

    Amy, after reading the article in the Globe, I am less incredulous than I was after reading your blog. He told her after a month (I misunderstood and thought it was after dating the same woman for 10 years!). A month would be a huge amount of time for me, but for him and folks like Katie I, maybe not so much. Like many things in life, you’ve got to “play it by ear”, since the “music” is not written down.

    Fair Winds,
    Mike

  20. Melitta
    Melitta August 30, 2010 at 8:12 pm | | Reply

    I am certainly open about diabetes, but I also understand hiding it from some people (however, not a romantic partner!). I have had people say such vicious and thoughtless things to me, usually because they don’t know the difference between Type 1 and Type 2. (Can’t you just lose some weight and go off of insulin? Wouldn’t it be better if you decreased the amount of insulin you take (said to me who takes 24 units TDD in her 5’9″ self).) I even had a yoga teacher, in the middle of class, start yelling at me for wearing a pump and why couldn’t I take it off and how can I do inverted poses wearing it?! So yes, if possible, I just hide my pump and go about my life so I don’t have to deal with people’s ignorant comments.

  21. Jen
    Jen August 31, 2010 at 2:25 pm | | Reply

    I am very happy that my now-husband trusted me enough to bring it up on our first date. We went out to dinner, he pulled out his kit to test and said he had diabetes, Type 1. I asked a few questions when were you dx, is there anything you can’t eat (sorry, I know better now!), and then we moved on to other topics. He made me feel very comfortable about asking questions, and I did some research on my own. (I had already come across Amy’s blog, so I knew right where to look!) ;-)

    It wasn’t long at all before I was madly in love. His diabetes is part of him, we are a team, and again, I’m glad he trusted me.

  22. Mike
    Mike September 1, 2010 at 8:33 pm | | Reply

    While I’m 19 years into my role as a PWD (type 1), I find little reason to tell anyone about my disease. Especially now. With insurance rates on the rise, I’m continuously fearful that I might be “unemployable” if I chose to leave my job and disclosed my diabetes at any time during my unemployment. We are not cheap.

    And I’ve seen the results of disclosing as well. I’ve been in a room where co-workers always referred to an open diabetic in phrases like “Diabetic XXXX was in that meeting the other day…” or “XXX was crabby today, must have been a low blood sugar” despite the person’s high level of professional performance during their career. And with nearly 12+ years in an industry where I know hundreds of high-profile people… only six know about my diabetes.

    Am I paranoid, probably. But when I’ve looked at creating a business of my own, or starting a business with several people whom I trust (yes, most of those people also don’t know that I’m diabetic), disclosing my illness just isn’t something to advertise — it’s the end of a conversation. In many ways, I worry that it limits my opportunities.

    In the end, diabetes can be a private thing. Sure, I’ve had meetings where my high sugar is pounding in my head or my sugar is so low that I can barely see who is talking to me but disclosing my illness becomes a pretext, a reason for others to disqualify my abilities. Yeah, it isn’t fair but it never was. Damn my dead pancreas.

  23. misskitty3
    misskitty3 September 3, 2010 at 10:33 am | | Reply

    I can say that also “Damn my dead pancreas!” but I also contributed to my condition. I also am T1 and like the “Person with Diabetes (PWD) title.
    Like everone else, if I had a choice, it wouldn’t be T1 or diabetes in general. When I as 1st diagnosed, I told everybody I came into contact with that I had it. As I got comfortable with it, I didn’t broadcast it as often or as loudly. How do you explain an insuline pump to a 2-yr-old?
    Or for that matter, a vial & syringe?

    My sister got a Ph.D in biological sciences, is very uncomfortable when I pull out my glocometer to test myself before meals. She concerned about blood pathogens being released because of the blood used to determine my BG’s. A holdover from the AIDS epidemic(I’m assuming).

    I struggle with people’s perception of my diabetes care; their”ignorant” information that is 2 generations old; the media hype that throws the general public into instant anxiety & panic. Shame on you, Mass Media!!

    I keep reminding myself that diabetes care is much more advance now than 5 to 10 yrs ago.; even fron 3 months ago. Hope springs eternal……

  24. ChefKate
    ChefKate September 3, 2010 at 9:47 pm | | Reply

    Ok, I’m type 2 and was just diagnosed this year, so I have a different story than most who have type 1. I have had the ignorant jerk who told me to stop eating something. I have had the brother in law who came and ate my lunch after I gave myself insulin and was distracted with a phone call for a few minutes. I have had the people who had grandma die of whatever because she had diabetes. I have had people ask me “should you be eating that?” and so many other issues because I have had to be open with my condition.

    Why have I had to be open? Because I am alone or with people who aren’t in my close circle of family and good friends quite often. Also, because this is all new to me. And, because I am losing weight and must change my insulin ratio often. Yes, I am on 4 shots a day for the past 6 months even though I was only diagnosed 8 months ago with type 2. I’m pretty severe, but a lot of my past weight issues and other medical issues now make sense – they still suck, though. I am very lucky to have an extremely supportive and loving husband, so I don’t have any experience about dating and diabetes.

    I also had my mom take me aside one day when I was visiting and suggest that I go to the bathroom in order to test and give myself insulin (I use flex pens). I told her “No. This is nothing to be ashamed about. It is something I will most likely be doing the rest of my life and I am not going to make it look like it is something wrong. That’s just like saying eating is something to do in private.” Anyway, she backed off and now deals with it.

    Before I go on, I do ask new people if they are upset by blood or needles before I test or give insulin. If they are, I do step into another room to be polite.

    Anyway, I have had issues in the recent past where I was traveling by myself and experiencing severe lows. I was flying, so I told the flight attendant what had been happening, what to look for and how to deal with it. I felt like I took control of the situation and asked for what I needed.

    I just don’t understand why to keep it a secret?!? If you are discriminated against at a job due to diabetes, you can take them to court! If someone is a jerk, ignore them and/or put them in their place. Say it with me “everyone’s diabetes is different”, “I can eat anything I want, just like you, and watch portion sizes, just like you should be”. My favorite response to “should you be eating that” is “yes.” no other explanation needed. I mean, if you have any other medical issue and people ask inappropriate questions, what do you do? You gently tell them how to not piss you off.

    One of the things that really helped me, my friends and my family when I was first diagnosed was “Diabetes Etiquette for those who don’t have Diabetes”. I found it somewhere, copied and posted it on facebook and emailed it to anyone who really wouldn’t let it drop.

    I guess what I’m getting to is those who will be near you (I would totally include those you’re dating because a lot of dating does revolve around food, movement and lots of potential lows) need to know what is going on and what to do when there is an issue. Talk about a dating faux-pas, how about having a low where your date has no idea what to do and you go into a coma.

    I don’t know, maybe I just like attention :D

  25. wheretomeetwomen
    wheretomeetwomen September 15, 2010 at 9:01 pm | | Reply

    Everybody have had different experiences in his life and according to those they would react completely different in similar situations. If Joseph (the writer) don’t want to talk about his diabetes when starting out dating somebod new its probably because he made some bad experiences in the past, so he started with a different approach. In todays ignorance of some people I don’t wonder. Who are we to judge over others decisions. We don’t live their lifes. Of course everybody can have an opinion, but in my eyes the opinion doesnt have to judge somebodys behavior, it should be just a “point of view” statement. And then it would be even better to try to understand the person before making any statement. But unfortunatly this is how people are and actually always have been, talking and judging other people to distract from there own defects. When do people start treating other people the way they would like to be treated?

    The beauty of todays technologie allows a lot of people who have any “defects or diseases” I mean not beeing Mr. or Mrs. Perfect in the eyes of our society to meet partners on the internet. The positiv of it is that you can be yourself, you don’t have to hide anything, and if the other person have any problem with your “disease” how sad, never mind, there are thousands of other lonely people out there looking for somebody like you.

    And there is a ton of good information on “How To..” I hope that nobody who has diabetes stays lonely at home for that reason, find somebody who has the same issues, there is nothing that makes a relationship stronger than to overcome or in certain cases to accept what can’t be changed, TOGETHER.

    To your success

  26. yola
    yola November 15, 2011 at 7:46 am | | Reply

    I think this post is a bit judgemenatl. I have been living with type 1 diabetes for seventeen years- since age 5 and the reason why I don’t disclose my disease to new friends or a lot of the old ones is because people are so ignorant and judgemental about this disease. When I drink a glass of wine people go to my boyfriend and ask him why I’m drinking if I’m a diabetic and does he know how bad that is for me.
    Even though I have tried to explain this disease to my aunts, uncles and cousins they all still talk about me behind my back when they see me eat something with sugar and say that I am not taking care of myself.
    I am not ashamed of being diabetic and don’t allow it to hold me back in any way but I don’t need the added judgement and negative energy of ignorant people. Its not because I am insecure or scared but its because I choose to have a positive support group. I also choose to not be called the “girl with diabetes” but to be called by my name.

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