Out of the closet with Type 1


#1

I have lived my entire adult life "in the closet" with Type 1. I have taken desperate measures to make sure that only a handful of people who have known me even know that I have T1. In college, only my roommates with whom I was close knew, and in law school, only one person knew. I have been at my current job since October 2005, and have not told anyone about my T1. Until today.

I had a horribly scary low bg at my office today. I went from 79 to below 30(!) in just 20 minutes. I usually recognize the symptoms of low bg enough to treat it before I become incapable of having a conversation or incapable of moving or such. I have been extremely lucky with not having severe lows during the day. However, last night I ran on the treadmill at the gym at a pretty quick pace, and did well over 3 miles. Today, at the office, I was battling borderline high bg's all day-- I do not like my bg over 130, but today I was up to 234 after breakfast, 161 after lunch. I figured I must be having a crazy hormone week, especially since running at night usually keeps me near-normal for the entire next day, so I slightly raised my basals and bolused a little more than usual for lunch. I know, I know, perhaps I should not have been so aggressive. But I really have been trying to keep my bg's close to perfect lately. Boy, is there a price to pay for that!

Today was the first time at the office where I seriously thought I was dying. I have had some pretty crazy symptoms with other lows-- the classic symptoms (hot and sweaty, dizzy, nervous, irritable, tired), and some other very unusual symptoms (seeing letters and numbers or pictures on the wall upside down, being convinced that I needed kiwis at the grocery store even though I never eat them, lying in the floor and thinking I could not ever get up, etc.) Today, my heart was pounding and my thoughts were scattered (i.e., "should I eat more glucose tabs?" "What about the rule of 15 carbs at time?" "Will my husband be able to access my student loan information to pay them off if I die today?" "Should I call my husband and tell him I'm dying?" "How do I work the phone to call him?" and on and on). It was horribly scary because underlying all the symptoms was a general aura of paranoia. I was convinced I was going to at least pass out or have a seizure. I have had T1 for over 22 years, and today's low was unlike any other I've ever had. Right when I felt like I was starting to suffocate, my boss (well, he's technically my boss, but I work more closely with HIS boss-- it's a small office) walked into my office, and said, "hey, you look.... dejected. Are you okay?" I immediately knew I was outed. Plus, I had my meter in my lap and was looking ridiculous as I was trying to figure out how I was going to check my bg (even though I check at least 10 times a day!). I mustered up all my courage and said, "No, I'm not okay. I need sugar." As I said this, I somehow remembered that I kept an emergency pack of Gu gel in my desk drawer, and I got it out and opened it. I told him that I needed to tell him something, and I sort of laughed as I told him that I was glad that he had a top secret security clearance, because I was very private about it and did not want anyone else to know. So he said, "Okay," and shut the door. The attorney who works in the office next door to mine was in his office, and my boss got the point that I did not want him in on the conversation. I told him that I had been living with T1 since 1986, and that I did not ever allow it to affect my work, but that, if I ever had a dangerously low bg, I would need for him (or someone) to know how to help. So I showed him where I kept my glucose stash. He was very understanding, and assured me that he was like a dead end road, in that what I had told him would go no further than him. I thanked him for that, and told him that no one else in the office or my entire place of employment knew. We had a long conversation about it. He knew a good bit about D, as far as the differences between T1 and T2, the challenges and potential complications, etc. His mother died of a stroke in 2003 after taking insulin for 14 years, he said, and having a few toes amputated. He didn't come right out with that information, like a lot of people (rudely) do, but just mentioned it when it was appropriate for the conversation.

I was so relieved that I finally told someone in my office. It's like a huge weight has been lifted off my shoulders. For the past 2 years, I have kicked myself for not letting anyone in my office know, because I spend a lot of time at the office and I can't believe how irresponsible I've been with it. I have speculated about how I might tell either of my bosses, and rehearsed a speech for it numerous times. But I just never had the courage to say it.

My lack of willingness to let anyone know about my T1 is deep-rooted, and based in large part on how people have treated me. Almost 100% of the time, I make sure that a person has known me for a very long time before I tell them, because, when I was little, everyone thought my diabetes was what defined me. A good example of this was when I ran into a woman from my hometown when my husband and I went to church with my parents while we were visiting them. The church was crowded, and we walked down one of the few pews that had enough room for the four of us. I ended up sitting beside this woman who had daughters close to my age, and she and her daughters had been my acquaintances when I was little. She extended her hand to shake mine, and said, "Hi! How's your diabetes?" I was shocked, thinking, why don't you ask me about my job, my husband, where we live, all the other life changes we've experienced? Why focus so much on my T1? It was obvious that that was simply the first thing she thought of when she saw me. And I didn't even remember that she knew before she said that. So you can imagine why now, I make sure people know ME first, and then my T1 much later. The big downside to this is that I don't feel very close to many people, other than my family. I have also had my share of unsolicited advice from the Food Police. (It's amazing how many people who do not have D think they know so much about it, just because an elderly family member of theirs had it!) And of course, I've experienced reactions of people who just think I'm a freak. Those reactions usually include pity, too, which I personally find offensive. And of course, there is another contingency of people who are convinced that you must have done something to get T1, or that it's preventable or that you'll outgrow it, or (this is the funniest, in my opinion), that you are a "bad diabetic" because you use a pump. So, years ago, after I felt like I had experienced just about every type of insensitive reaction, I figured I'd throw in the towel and just not tell anyone, so that I wouldn't have to deal with it.

So, in short, I am just not good at opening up about my T1. But I think today was definitely a step in the right direction. How do you deal with telling people about your diabetes? Do you wait until you've known them for a while?


#2

I think that it is good you’re on this site, as we need someone we feel safe to “expose” our true selves too. I am usually quite open with my T1. I don’t go out of my way to bring it up, but if a situation arises, or if I need to test, then I share. Part of my openness is that I feel if I share, I may be able to help someone else out. You would be amazed at how many times someone has asked me if they could share my phone number with someone, or how I’ve been able to educate someone on the topic. Of course, there are always those I would rather not waste my time with, but it usually leads to more positive situations than negative.

I would think you may want to tell at least one other person at work, just in case your boss is gone when you need him. I’m glad you feel a little relief, and I’m especially glad you’re okay. Lows like that really suck!


#3

Glad you posted about this, and glad you’re OK. I do not usually tell anyone because I’ve been in one too many situations where it cost me something (jobs, relationships). Maybe that makes me irresponsible, but I’ve been lucky and never needed outside assistance either. My current boss has already tried to get me to switch to a cheaper health insurance plan and doesn’t understand why I won’t change (my dr. only takes PPO patients, and I’m not about to change after 13 years of great control for a job that isn’t very stable).

So to answer your question yes, I wait until I’ve known people for a very long time (2+ years) before I tell them. The Diabetes OC, however, are all my tribe already :slight_smile:


#4

wow. that’s an intense day. glad you feel good to be “out” to someone at work.

i am extremely open about my diabetes. everyone knows (i get surprised when someone doesn’t know, haha). i can kind of understand where you’re coming from in the way you do things, and i respect everyone’s right to do things however they want, but i also just really can’t understand it in another way. i can’t imagine living my life that way.

sometimes i do get annoyed with myself for being too open and feeling like it is the focus of all conversation. but mostly, i like to talk about it. i like to explain it and bring it into a conversation naturally, like the big and ubiquitous part of my life it is. I like to bring it up very early in getting to know someone so that it is just part of conversation (like name, where you’re from, job, etc.) that arises naturally rather than a Big Talk.

i also like people to know so that it doesn’t seem like i’m being weird later, that i can have it out in the open ahead of time, so no one will think that i am being rude by eating at inappropriate times or checking my “pager” or “ipod” as most people mistake my pump for. i usually actually make an effort to have my pump showing - i’d rather have my pump showing, so people can see what it is, than have a weird bump messing up the hang of my clothes. and honestly, also, i am a bit of a medical nerd and sometimes enjoy discussing it and/or getting some attention around it (although that was a lot more true when i was a kid). i do not enjoy those inevitable totally inappropriate comments though that people always have - whether they’re food police, grandma stories, or “can’t you just take a pill for that?”

thanks for sharing, glad everything is ok after that low!

ps i had a fast drop today too, but luckily i started higher - i went from 155 to 58 in 20 minutes (during which I lifted weights and ran - but only a mile!). it sucks!


#5

Wow, scary low! I totally understand where you are coming from re: not being “out” with your diabetes. I was the same way until about 5 years ago, and didn’t want to ever be perceived as using D as an excuse. The turning point for me was when I got my pump. Even though most people think it’s a pager or cell phone, wearing something externally seemed to trigger a recognition in me that it was OK, and perhaps even beneficial to tell people. Doing so has opened up more wonderful conversations than I can count. It seems like when I share that part of life with others, they feel more free to share things they are dealing with. Of course, I don’t go around introducing myself as “Carol the diabetic”, but if it comes up naturally, I don’t shy away from it anymore. We all have our run-ins with the food police, but personally, I think folks who act that way have bigger problems than D!


#6

I have been very open at work about my diabetes and it has never hurt me. I actually have given advice to people who are over me who have T2. Sometimes I really hate the comments where people say “you can eat this cause you can turn up the heat on your pump”. I think some people think this disease is a lot easier then it is. But of course they have never seen me severely low and have never seen the tears of fustration that I have had when I can’t get my BS to be normal. I just look at this as life and that at some point or another I have said something stupid to someone with some other problem.


#7

I’m fairly open about my diabetes at work and in other situations. I’ve been fortunate to be with other folks with diabetes in many situations and I think that’s helped.

I’m glad you were able to tell this co-worker. I’ll bet that was a certain amount of relief.

Today I was in a bible study at work and I was tired, one of the other guys asked if my blood sugar was OK. I went and checked and it was fine. But I’m glad he asked.