Out of the Closet, or NOT

A lot of diabetics are uncomfortable testing their blood and taking shots in public. I’m totally out there, perhaps because I was just too old for all that self-consciousness BS by the time I got this disease. Or perhaps because after breastfeeding three children in public places, I just couldn’t make no never mind about giving myself a tiny little shot. From the beginning, I’d just unload my purse on the restaurant table and get to work. No fuss, no muss!

But now I’m slowly starting to crawl back in the closet. What I’ve discovered is that most people are not at all accustomed to what diabetics do. Not that anyone has ever been offended, mind you, but once I’ve done my “demonstration,” the rest of the meal or social event consistently turns into my amateur version of Diabetes 101.  I hear all about the many family members with Type 2, and then I get sympathy for having such “bad” diabetes. I know my companions mean well, but most of the time, all I really want is a few minutes’ recognition of my condition, and then a pleasant non-diabetes-centered evening.

Of course I’m way past this point with good friends. But when we go to a party or out with new acquaintances these days, I find myself slinking off to the bathroom when it’s time for the needlework. I just don’t want to deal the impending reaction/distraction. 

The reluctance to “tell” is not just about injections. A friend who’s on the pump says people often mistake it for a pager. She doesn’t bother correcting them anymore. Another woman I corresponded with talked about the assortment of discomforts she endured in order to hide her pump, which is quite challenging with today's body-hugging fashions (and we do love to be fashionable!)

I also know lots of Type 2 diabetics who just keep quiet altogether. The more we talk about it, the more it becomes a defining factor of our identities. Who wants to be “that diabetic woman” (or man) to people who barely know us? 

So do you tell people at work? This is also a big one for many diabetics. Since I work mostly from home, I haven’t had the “office” issue to deal with much. (But after this blog, I reckon the cat’s out of the bag, ay?)

I noticed on the ADA message boards that many Type 1s are having trouble with severe lows at work, and/or excessive tardiness and absences due to hypoglycemic episodes. Seems to me it would be better to tell your boss up front that you’re diabetic than to wait until you’re forced to back-paddle over what appears to be poor performance. Here telling is an imperative, I think.

I suppose this is a hot topic at diabetes support groups around the country, but since I’m not much of a joiner, I’m shooting it out into cyberspace to see what comes back. My take is, I’m certainly not ashamed, but in some situations, I just don’t want to open the diabetes can of worms if I don’t have to. What say?

Comments

[Jo]

They know at my job that I'm diabetic, which was great when I crashed the other day. Several people I work with have family members that are diabetics too, and have thyroid conditions.

I wear a med-alert bracelet, so someone was bound to ask sooner or later at work.

[Alexis]

This is where a pen needle can come in handy. A trip to the bathroom is the easiest way to take your insulin, but I have found that with a pen needle I can usually take my insulin underneath the table without even looking. My friends usually know what's up, since I am muttering to myself as I count the units being dialed.

Amy, you posted in one of your earlier entries that the use of alcohol was not always needed. Where did you find that info? The restaurant situation has already made me forgo using alcohol at times just to be quicker, but I never actually knew that it wasn't necessary.

[Amy Tenderich]

Hi Alexis,
Actually I do have an insulin pen. I just need to get more adept at using it under the table, I suppose!

The Diabetes Educators at UCSF and at another hospital here both told me the alcohol is not really necessary on the skin. It is useful for sterilizing the vial or pen, esp if the insulin is at room temperature. But they now advise patients to either let it dry on the skin COMPLETELY before injecting, or skipping it altogether.

[Gina]

Everyone at work knows that I have diabetes and they are really supportive and very involved in my care. (sometimes too involved) but i would rather they know then not, just in case of anything. I sometimes have a hard time coming out of the closet in public though (even though i am on a pump) when testing my sugar i will put the meter on my lap where no one can see or just go to the ladies room even though i hate doing that because it feels unsanitary to me.

[Kathleen Weaver]

I'm still pretty much out there with my diabetes, and the conversations really don't get to me. But then that's me. I don't know if it's the pump, having to have my head all the time on making constant choices for a healthy lifestyle or what, but the Diabetes 101 doesn't get to me. Sometimes it helps TO have something to talk about.

When I was doing the shot thing though, I did use insulin pens, and I did shot up through my clothing. It was more discrete than blood sugar testing it.

Though I have the blood sugar testing ritual down too, I should since right now I'm testing every few hours. Most of the time I do it and no one even comments.

[ShannonL]

My son is 5 and has had type 1 since he was 3.5 yrs old. Because we were so self conscious at first, we would secretly test his bg's at the restaurant table and my husband would fill the syringe in the bathroom. A man walked in while he was doing this and thought my husband was shooting up. When my husband explained himself, the man immediately said "God bless your son" and was apologetic. Since then we've been out in the open with everything we do. What would we be teaching our son? No secrecy with his diabetes. The more it's expected, the more it will be accepted.

[Amy Tenderich]

Wow, Shannon. Thank you for sharing that. You are so right! We ought to be as open as possible, really. There are so many of us, and the general public wouldn't be so surprised if we just did our thing without reservations. I say, God bless you!

[jesper b]

Hm - to a certain extent i agree with the openess suggestion. it is directly disrespectful and stupid not to tell your co-workers and friends. If you start acting weird its better that they know whats going on rather than start imagining other possible reasons! The human mind can quickly find reasons much worse than diabetes. But i feel that an important question is in which situations the world can actually handle this openess.

The needle is a good case because of the fact that needle fear is so vividly present in society. I mean big grown men faint at the sheer sights of needles. Shannons man had a chance to explain himself, thus it was not an issue. But how about the many times we do not have the time to explain it?

My point is just that we can speak openly about it, but with the needles and with blood in general - most places i would say take it away or hide it due to the fact that the world cannot handle it. Be open for your own sake, and be kind to the world...

And job-securitywise - i personally wouldn't like to work in a company culture which would fire or not hire me for being a diabetic. Thus saying it might spare me a lot of effort as i would find out sooner or later anyways. For many diabetics ive spoken to it seems to be a psychological issue for diabetics themselves. Most other people around us seem to respect the fact that were living with an extra challenge in our lives....

Best

jesper
a diabetic type1 from Copenhagen, Denmark

[terry]

A waitress friend of mine at a local truck stop (no I'm not a truck driver) asked me, since I was diabetic, what should be done when someone lapses into a diabetic seizure. Assuming this is the same as a hypoglycemic episode, I would've attempted to feed them something sweet like pop or juice. I"ve never had that experience, I could usually feel the symptons (shakes, nervousness) before I get to the point of passing out. A customer at the restaurant had a seizure a week prior. I guess asking if I would've done what they did. I always carry some M&Ms with me. Those glucose tablets (2g of carbs) just do not do the trick!

[jim carhuff]

My boss knows i am a type 1 diabetic and only 1 of my coworkers knows. I work in a hospital as a pharmacy technician and you would think with all the knowledge healthcare professionals have they would be understanding about the disease, i find the nurses are very supportive but my boss is the worst, i have missed 3 days in 2 years of work mostly because of a cold or flu, i find myself going to work even it i do not feel well because i am afraid that i will get fired for missing any time from work.
My boss makes me feel guilty if i miss work or do not work extra days that maybe needed because of the shortage in healthcare workers. Beause of the burn out rate at my hospital pharmacy workers average about 4 years and then move on to other jobs in healthcare or other hospitals. jim

[janie de los santos]

You would think a lot more people would know about diabetes. My room mate and I were looking for an apt. to move into and all most got it till I mention that I had lost my toe due to diabetes. Can you believe after I gave the down payment for the apt. and called to ask when we could move in, they said are you the one that has diabetes? When I said yes. They acted like it was contagious.

[Terry Jennings]

My first experience with diabetes was when my oldest daughter was diagnosed at the age of 7. That was 18 years ago, since my son also has been diagnosed with type 1 diabetes, and my mother and I have been diagnosed with type2.
I am also a diabetes educator. I am sure you have guessed by now that most of my awake and even some sleeping hours are spend on diabetes. Here are a few suggestion that I have about coming out of the closet:
1. For your safety, someone at work, play, and school should know that you have diabetes and what to do if you have a hypoglycemia reaction and unable to treat yourself. I know that when I am at my desk just mumbling that someone will get me a quick acting carb. Sometimes you may not also have the energy to get your glucose tablets, since treatment is at least 15 grams of carbs, that may be 8 glucose tablets if they are only 2 grams each.

Test in public or not: This is something that I have been on both sides of the fence on. When my daughter was first diagnosed I wanted everyone to know what a brave daughter I had, but then as she got older she did not want anyone to know, she is now at the stage if anyone ask she just simply tells them that she has diabetes and that is what she has to do to stay well, and if they continue to want to ask her questions about diabetes she directs them to the ADA web site. That usually stops all the questions and stories.
When someone tells me that they have the "good or bad" diabetes, I always ask to meet it because I have never seen a good or bad diabetes just different types.

Terry Jennings, RN
from a large family diabetics

[JustLinda]

In years gone by, my husband has not. If the topic comes up, he's forthright. But as a matter of routine, no, he's not. He's very conscious of taking shots in public, lest he be mistaken for someone using IV drugs. We've gotten the looks, the questions, in airport security and such. Me, just the wife-of, I always have syringes in my overnight bag. They raise eyebrows.

But now, recently, with his hypoglycemic-unawareness, the risks are greater and yes, he tells because he must. It's imperative.

Just last week, his boss found him wandering in the warehouse, sweating and disoriented. If they hadn't known what to do, it may not have gone as smoothly as it can when one is aware, educated, and prepared.

So yes, now we tell employers and anyone who may need to attend to him.

[Jeanine]

I am new to this site, but the topic did hit a nerve. I am a mother of a 10 year old girl with type 1 diabetes. I also had a brother who passed 2/2005 @ the age of 35 due complications of this disease. I also have 2 brother in laws with type 1. I am amazed at what people say about the disease, its equipment etc. But I feel that it is imperative that we educate every person that asks. I hope that by raising awareness people will donate money, or learn about what devastation this disease can cause. My daughter is often asked about her pump, meter disease. She often ignores the questions because she knows that people, including adults just do not understand. She even had an adult tell her she had diabetes becuase her MOM fed her too much junk when she was a baby!!!!! I hate for her to test in bathrooms and hide her care that is so important to maintain her health. If people could learn about type 1 and understand the magnitude of this disease, I think we would see cure in this lifetime.

[Chris Grant]

I have been a T-1 since July of 99. I've been on the humalog pen for about 3 years now, and in the past, I have not had any issues with BG testing or injections in public. My daughter (age 4) was also recently diagnosed, and I have started taking her to the restroom to do her checks/injections and doing mine at the same time. She is still somewhat hesitant about getting shots, and for now it is more easily accomplished in private.

[scott]

I have always kept my type 1 to myself since age 18, but I guess I'm lucky that I've never had a low that caused me to become disoriented before I corrected, even in the 30s. I just don't like answering questions about it and certainly don't want people judging what I choose to eat. It's just none of their business. Am I the only one who feels this way?

[Lyle Simmons]

My son is 8. He was diagnosed last June. We are TOTALLY out in the open. He educates anyone and everyone who asks (and even some who don't). If this kid can go through the days of tests and shots wearing a smile, it gives everyone else a chance to reflect on their own problems and realize that they don't have things too bad.

Keep it in the open - do not be ashamed. Gain a little strength from my son. Hold your head high. We will all battle many things in this life. Hold your head high and you will never fight alone.

God Bless from an Iowa Dad

[RobD]

I agree to keeping it in the open when possible! Of course there are times when more subtety is called for, and even occasions when you simply don't have the fortitude or stamina or reason to deal with the subject at all (and people's reactions). All very good reasons to keep it quite occasionally or in specific circumstances. But I think it could be isolating and a real shame if it got to the "closet" stage.

As far as workmates, colleagues, acquantences etc, if you can manage it, try broaching the subject in a light incidental/conversational way and make it clear that it's not a subject for excessive sympathy, medical whinging, witholding the sugar no-matter-what, or whatever other way people often choose to handle it.

How YOU talk about it will set the precedent. Move the topic along once the fact is established that you have diabetes, are happy to chat (to your own terms or level of comfort) but are not going to dwell on it or allow it to be a constant major focus. I do find this works most the time!

If people want D 101, I will often give it, if I feel like it, and if I think the interest is genuine and the conversation is benefiting. When it's an annoyance, the best way out is to put the focus back on the other person! Ask them questions about themselves, they will usually get sidetracked... :)

[Jaz Horsley]

I just found your site and I'm enjoying it. Thanks.
I've had Type 1 for 40 years, since age of 10.
I'm now using Novolog and Lantus and use both pens and syringes, depending on circumstances.
I inject through my clothes into my abdomine, usually tucking a tissue between shirt and body to capture any blood. (My wife says "You stain it, you clean it!")
No alcohol, but I'm a frequent bather.
Anyone else doing the through the clothes routine? I've had no problems: have you?
On another note: anyone tried to get on an airplane carrying insulin in a Frio cold pack?
thanks again for the site and the "conversation"

[Mary Beth]

My son, Type 1, is 16 and has been diabetic for 7 years. He also now has celiac disease and has to eat gluten free. I have always been open with others but he does not want to be. He is away from me a lot now and does not check himself regularly (he's on a pump). He is embarrassed. He says, "I hate it [diabetes] so much I try to not think about it." Can't blame him but it won't keep him healthy. Fortunately he usually judges pretty well by the way he feels and when I'm with him he checks regularly. He is also very good about bolusing for his food. So I hope this season in his life doesn't last long and he can be more comfortable with his situation.

[Brendan]

I find that people rarely notice that I am doing injections. I will just pull the caps off the pen, put them on the table, etc.

I had one friend who would have dinner with me frequently and never noticed but really wanted to see it. I had another friend who is very uncomfortable around needles and somehow he always managed to look as I was injecting.

http://www.catchagideon.com

[Alex]

I've had type 1 diabetes for almost 40 yrs. Was diagnosed at 15 and I loathed everything about it--the word, the urine testing (dating myself there!)and having my body so completely betray me. Anyway,until I was in my late 30s I was very secretive about having diabetes. Never told most of my co workers and though some of my friends knew, I never ever discussed it or asked for support. Around my late 30s I got a job at Kaiser's research center in Portland, OR, and it was partly because I had diabetes that my boss hired me. I worked on a diabetes study and was very successful and effective as part of the research study team simply because I could relate to the participants.

I have a pump now and don't hide it, but don't make a big deal about it either. I test my blood sugar in public, at work, in restaurants, etc. and only two people (one co worker and one friend, I think) got a bit grossed out over the blood. As if I was bleeding all over...

Yeah, I hate the lectures, free advice and condescension and even the "if I had diabetes I'd never take shots or medicine; I'd find a cure" that a few folks I've known have said. And I don't like the doom and gloom folks either, who assume I'm going to die tomorrow of horrible complications, and who want me to listen to all the horror stories of people they knew who died, etc. People who are needle phobic piss me off bigtime, esp. when they are the same people who believe (out of total ignorance) that it's my fault I have the disease and that I'm not trying hard enough to get rid of it. However, I would never go back to being secretive. Tough luck if people can't deal with it. I seem to attract people who can't live without giving me free advice about all aspects of my life, so I learn to keep quiet around strangers, or to snap at them nastily when they get too pushy.

As for going through an airport with a Frio, I do it all the time and have never had a problem. Nothing has ever gotten me wanded or stopped except once I had a mini screw driver set which I'd forgotten about. Never been overseas with all my gear so don't know what that would be like.

[claire]

this is so interesting, because this just came up at work. i always tell my boss immediately, and find a way to broach it to my coworkers more conversationally, and give them the chance to ask questions.

i do this because they have a right to know. my employers are liable for workplace accidents and my supervisor will likely feel responsible for my safety and it's not fair to expose them to my low crankiness and confusion if they have no tools to understand it.

i tell my friends who become close, who experience a low with me, or who are my companions in activities that are likely to bring on a low, like hiking. i find natural ways to do this, so that by the time it becomes an issue, most people know, and know what to do. i'm the opposite of brittle, so i can always take care of it myself.

recently, at work, we had an intern come in who turned out to be epileptic. this is a much scarier disease to people than diabetes and she's suffered for it--even lost friendships after she told people about it. as a result, she didn't tell us, and then had petit mal seizures in front of me (when i was training her) and then a series in front of the supervisor, who was totally freaked out.

when she seized in front of me, i just assumed that she was having a low ;) and didn't freak out. when i found out later that she was epileptic, i was extremely angry--probably angrier than my supervisor--because i could empathize, but still felt (and feel) strongly that it's wrong to expose other people to taking responsibility for your disease without preparing them for it.

the supervisor had (kind but strong) words with her and she came to me and we talked for a long time. as a result she sent out an email to the whole office, letting them know and leaving herself open for questions. i'm proud of her and think that anyone with a chronic illness that exposes coworkers to situations like this should do what i do, or what she did.

[Katie]

I have had T1 for 22 years. I guess you could say I'm completely "in the closet" about it. I prefer to keep it to myself, mostly due to the things people have said to me about it. It's amazing how many random people who have no experience with D think they know so much about it! I've gotten everything from comments about how I will "never be able to have a child" and stories about horrible complications to judgmental, watching eyes and questions every time I eat anything! I admire those who use it as an opportunity to educate, but I have to say I'd rather not even get started with it. That's just my $0.02.

[julie]

i don't hide anymore, i definitely used to but i think that's from the school days having to go the nurses office to test and shooting up in the bathroom. i test and inject pretty much everywhere i go... subway, airport, restaurants, clubs, parks... i usually don't tell people at work i'll just be doing what i do and someone will walk by with a confused look, then i'll possibly explain if i'm in the mood or they ask. but i enjoy educating the masses little by little about our daily lives.