'Coming out' as a Diabetic

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1

Recently, I’ve had to ‘break’ the news to several friends about my diagnosis. At times it has felt like I’ve been keeping a secret for them. In many ways, it’s a relief once I’ve revealed it. It also explains alot. My lack of contact, stand-off-ishness, and generally being a crap friend.



But I also sometimes wish that I had a great big bumper sticker on my forehead reading, ‘I’M A DIABETIC. YES, I HAVE TO INJECT. PLEASE, NO PITY.’



I feel that in many ways, I have come to accept my condition over the past 5 months, after a rollercoaster of denial, anger, sadness, loss etc. Of course, I still have my moments, days even (meh) when it all still feels unreal or overwhelming. But on the whole, yes I am proud of myself for all I’ve achieved and worked through. I cant expect not to have off days. I’m not perfect, nobody is.



I cant expect my friends to just ‘know’. So yes, I have to ‘come out’ to them. Some have found out through the grape vine, but in a way that makes it more awkward. I dont know if they know, what they know. They dont want to bring it up with me, in case I dont want to talk about it, or they feel bad for me. Ughhh!



So when I meet up with a friend, I sit them down and just say it, very matter of factly. They have no idea about the trauma I’ve been through, and they never will. But why should they? They dont have a clue about this disease, and they have no need to know. It doesn’t affect them. If I ever find myself getting frustrated at other people’s ‘ignorance’ I just think to myself ‘How much did you know, Emma about Diabetes before your diagnosis? The answer is, not alot. Why should they?



So, I do like to educate a little, depending on the friend, and if they’ll let me : P It’s nice when they ask questions about how they can help, or what to do if I go low or high. I really appreciate that. I think that is one of those things that shows that they really care about me.



What I find difficult is the PITY. When someone looks at you, and suddenly you’re different in their eyes. It makes me feel like I’m this fragile, egg shell, which could break at any time. If we’re at a coffee shop, they might say ‘Oh gosh, so are you ok now then?’ Well, of course I am! Or, like the time one friend was eating some cake with her coffee, looks down and says ‘Oh my gosh, should I be eating this in front of you?!’



Sometimes it amuses me, and yes can be endearing. But this whole process is exhausting.



I guess what I need is a big ol’ coming out party, with sugar free jelly, right?! Then I could let everyone know, and I could get on with living my life. Actually scrap that, I’d have a nice large slice of ‘coming out’ chocolate cake : D

On second thoughts, that might confuse a LOT of friends. But hey! Diabetes is, (and will remain) a mystery to them!

For more of my ramblings, visit my blog ‘The Sweet Life’.

2

Yes you’r right, people can’t be expected to know about what is after all a complex condition. But what ISS annoying is when people THINK they know & start lecturing/interrogating. It’s great that some ask you how they can help you if you are high or low, sadly I’ve never experienced. I find a lot of people take the attitude that, if I’m unwell, it must be my fault, that I’m doing something wrong. After all, if you’re diabetic, you just can’t have sugar, that’s all there is to it, how hard can it be? Grrrr!!

3

quote: 'I’M A DIABETIC. YES, I HAVE TO INJECT. PLEASE, NO PITY.'
Really like that one!
For the rest: People without DM are, just like yourself before diagnosis, ignorant and not knowing.
Good thing you got this website which has plenty people who feel just the way you feel :o)

4

When i was first diagnosed I used to hide things from people around me. I pretty much stopped hanging out in social situations. I did not want people to know I had to shoot up. Something happened to me about 3 years ago where I really stopped caring what my friends and coworkers thought about what I did to keep things in check.

At that time I was in a big critical project. Failure was not an option. After working insane amount of hours I started to get really bad lows and highs. I go throw up and work again. After that episode my meds got bumped up cause my numbers were all over the place. It took a year to correct the problem. At that point I did not care if people saw me test or if I had to pause to eat or eat certain things.

I decided to let my work and the things I do for my life speak for themselves. So I started to make a list of things that I do better than people who dont have diabetes. One of them is I can ride a bike further than a lot of people who dont have diabetes. Everytime any of my friends think to feel sorry for me I invite them on a long extensive bike ride and for the most part they still cant keep up.

Everytime I complete a big project and have 100% success I tell the managers that I deliver to that I have diabetes. I educate people with the things I accomplish in life. Its a small way to change the way those around us think about what we go through out the day.

I chose to eat what I eat and I dont care. I do get questions about what I eat but I have coworkers who have really picky eating habbits and they dont have diabetes so my eating habbits are not that out of pace with people in my group.

So my advice to you from this is be yourself and eat what you want and correct when you have to without worrying about what others around you think. Eventually the questions go away from those around us. Every once in a while you will get the questions but they wont bother you as much. So tell people what you want to tell them, maybe you feel that if you tell people it will make you feel better.

take care

5

I have this issue a lot, and for me it’s even more complicated because of how I’m “becoming” a diabetic. I was born with a genetic condition (congenital hyperinsulinism) that has caused my pancreas to overproduce insulin for years. Now, my beta cells are “exhausted” and are slowly pooping out. But, they still go haywire sometimes, so I still have hypos that are associated with congenital HI. It’s been frustrating because every day is a balancing act of medication, checking my BSL, and trying to figure out what “treatment” I need that day.

But the hardest part has been dealing with my condition in social settings. There’s such a long explanation that comes with it that, sometimes, I wish I could just say, “oh yeah, I have diabetes” and that be the end of it.

6

You sound like you have a wonderfully balanced perspective. Good for you. Nevertheless it is exhausting.

I’m confident the people who matter to you will see, from your example, that pity is indeed nothing you need, and will provide you the support that is appropriate.

7

WELL SAID!!! Yes Pity gets me EVERYTIME!!! I’m so glad you’ve come to where you are now. Yes every once in awhile the old feelings (of self dought, even pity) comes to me but what you said "Diabetesis, (and will remain) a mystery to them.

8

Congratulatiions! You’ve jumped one big hurdle, that although I can’t say I totally understand not telling people, sounds like it has been a block for you. Great going.

I am very proud of you. Can I ask a question or two?

Why were you afraid or hesitant to say anything about your “D”? What were you expecting your friends to do?
Did they support you more after they knew? I haven’t experienced any of the thoughts or actions from friends or family that have been described here, so I am puzzled and would like to know the “whys” behind not saying anything.

I told everyone, why? Because if something strange happens to me, like a serious low, I want people around me to know what to do, and to be able to speak for me if I couldn’t. And I felt like there was so much mis information out there, that I wanted people to know the correct info. I didn’t get pity from anyone…if anything, I got directions, which I then answered with I’ll take care of me. After 10 years I am still getting the occassional questions from family and friends…maybe because they are hearing so much about diabetes in the news…and I do tell them what I know. A sticker in my head, well, my medi-alert bracelet, rather takes care of that…

So someone please explain to me or educate me why everyone is so afraid, hesitant, etc to tell people they have diabetes? Do you do the same thing with other conditions that you could have? Would you do the same say with an eye problem, or arthritis?

9

Cathy, I can understand Emma being reluctant to tell about her condition. Often it doesn’t help, say if you have a bad hypo, people I know still don’t understand what to do. They’re so set on this idea that a diabetic must NEVER have sugar. You know what they say, a little knowledge is a dangerous thing. People understand so little about diabetes & it doesn’t matter how much I’ve tried to explain, there’s often no changing these preconceived ideas.

10

I can understand not wanting pity. But, how about a little sympathy? Your friend eating cake with her coffee was at least “with it” enough to recognize that maybe she should be thinking about you and what you needed, rather than about herself – appreciate that, because it’s valuable!

11

Coming out to others means you have reached acceptance of the situation. This means better control and management of your new life style - and eventually better health. Stay motivated and be aware that things get better as you go, your new life style will become the new norm. Wish you the best.

12

I have had some friends that just don’t get it some who want to get it but ask way to many questions over and over again. The pity and some of the comments(does taking shots hurt, You know if you just ate better ect) get to me. As for your friend and the cake it could be worse. Nothing bugs me more then when I check and I am in the 65-70 range and decide to have that piece of cake and I get “You cant eat that”. I just smile and think in my head “Well we are going to be (insert physical activity) later”, or “well I just took a shot for this you dolt and if you don’t want me passing out I better eat this”.

13

I think you are looking at this with a good perspective. Of course none of us – unless we already had a diabetic family member or close friend – really knew all that much about diabetes. Why would we? Having compassion for your friends’ “ignorance” will go a long way towards keeping your heart open and your life full of good people. Being impatient and grumpy with them for not knowing what you know will only make you more isolated and estranged from the people around you – where’s the fun in that?

A little humor goes a long way. If someone gets into your business, a light laugh and “OK, Miss Diabetes Police, don’t worry. I can have this cake right now because … I’m a little low right now or I injected insulin to cover it or we’re getting ready to walk cross-town and I’ll need the sugar soon…” will help them learn a little bit and clue them in to the fact that you’re on top of things.

If they want to know how to work your meter or what they should do if you faint or are out of it (dial 911 please!!!) or what that beep from your CGM means – and you feel like explaining it to them – then you’ll have one more person in your life who is less ignorant about who you are and what you need to be happy and healthy. That sounds good to me. They’ll never know as much as you do, but that’s OK. They’re part of your web of happiness and every time one of them gives you a little knowing smile when you give yourself a bolus or grab a little bottle of orange juice and snork it down before you get to the check-out counter, they’ll be “in on the secret”.

I say, let them in.

14

Wow, I didn’t expect any sort of reply to this, as it’s a blog style post. But thanks everyone, your comments are so valuable to me and I can relate to each and every one in some way : ) I’m so grateful to have found this community, which is so supportive. You guys just GET IT. *sigh. It’s quite a relief. Thanks for taking the time to read my rambling thoughts. I’m not even sure if it makes any sense! Just what is going on in that head of mine.

15

Cathy, to answer your questions, I think it was more the actual telling or disclosing of the information, rather than how the other person would respond to it. I mean obviously the pity is frustrating, but that wasn’t the biggest hurdle that I had to face. Finding out about my diabetes has changed me in many ways. Yes, i’m healthier but I do feel that I lost myself along the way. I questioned my identity, and saw everything in a different light. I think this was part of the grieving process, which I’d like to think I am mostly over now. I still have my moments, but all in all, I have accepted it. By having to tell friends, it meant that it made it more ‘real’ to me. Saying out loud ‘I have type 1 diabetes. I have to inject 4 times a day.’ ‘How long for’. ‘Um… the rest of my life, or for however long I want to stay alive’ is pretty hard to do! So it’s less about the other person and more about how it made myself look at my condition. I know it probably helped me/is still helping to process it, and get over the initial denial, but having to go through the whole story. I just didn’t want to put myself through it again. I’m having counselling, and this has helped alot. I also think it’s hard to ‘sum up’ the diagnosis, hospital etc as it was so traumatic! By doing this, it just felt like I was making it out to be this tiny thing, that just sorta happened. I think I wanted to really come to terms with it myself, before telling others. I think i’m still a bit afraid of letting all the emotions of the diagnosis come back to haunt me if you like, by saying it aloud and making it ‘real’. But this is something I need to face. And will get easier with time. The funny thing is, I hate talking about it, i’m sick of thinking about it the whole time, but I cant NOT think about it, to look after my health and get myself in a good place. Once I start talking about it, I just cant stop! I have some great friends, and of course want them to know. It is part of me and who I am. But it does not define me. I think I need to make that clear to myself before I can express it in words that my friends will understand and process in the way that I hope they will.

Right, so that kinda turned into another blog! haha, oops, well if you are still reading this, I’m impressed : P

16

LOVE your last comment there! Yes You got it understood now!