Often, someone with diabetes will choose to conceal the fact from friends and even some family members. There are reasons why people do that, but that’s not the subject here. My question is, rather, if you are one of those who hid the fact and then later chose to open up about it, what caused you to change your mind?
There’s a particular reason for posing the question. The founding principle of TuDiabetes, as articulated by Manny, our founder, is “No diabetic should ever feel alone” -- and I’ve lost count of the number of members I’ve heard say “I thought I was alone until I found this site”, or words to that effect. It can’t be denied that there is a sense of community here than many PWD don’t find anywhere else.
So, to bring it full circle, what I’m wondering is this: did the feeling of belonging you found here influence you to “come out” about your diabetes and let the chips fall where they may? In other words, what changed?
The fact of the matter is we ARE alone, trapped in our own skin, even in/among vast groups of people in the real world.
I do not announce to anybody I am a diabetic in the face to face world. It is a private and personal matter. I don't care about your heart attacks, your VD, your gum disease, why on earth are you sharing it with me, if I do not know you intimately??? Diabetes is the same, IMHE
Once upon a time I was a member of the dial-up Commadore Diabetes Network. With time I've learned to articulate, express my experiences with more brevity, and care I believe. Here and elsewhere there are many whom I passionately disagree with in terms of their approach and zeal.
However fundamentally, one of the rules I have learned very clearly in that time, we help one another if we can, or barring that at least do no "harm"… Diabetes 101. I might not know you, or her, or little Timmy, Mary… the end of day, almost certain Ive been in their position, their situation, and believe most fundamentally, we are required to assist one another if we are able.
Us versus them, I support us every time. A message board encourages it.
I've been out for quite some time. To everyone, family, friends, co-workers, customers. I decided early on that I wasn't going to go through life hiding my condition in order to make me or others feel better. I don't advertise but I openly discuss things if the topic comes up. By doing so I have developed a circle of others touched by diabetes that I never would have known if I had not been out. We are all out here at TuD, but not always in the rest of our lives. And we may never appreciate that many people around us who also have diabetes but haven't reached out.
I would also note that I have developed a refined sense of "Diadar." Diadar is the ability to detect someone else with diabetes from subtle clues that are not obvious to the "normal" population. I'm not talking about seeing a pump, I'm talking about seeing someone read a nutrition label.
I've always been really open about it. It's just a shot away...
Now that I think about it, I don't think that I was ever "in". I do not cram it down people's throats per say. But if the topic arises, I will talk about it. Diabetes is part of what makes me who I am. Without D, I would be a different person.....maybe not as kind, maybe not as nurturing to others who need my help. Who knows. But, at the end of the day, I am proud of the journey I am on, although at times it has sucked. But my mistakes and accomplishments have made me the person I am today.
Sure, I have felt alone at times. But, then I look around at my circle of family, friends, loved ones and I realize that I am surrounded by a fantastic support group. I believe it's a choice. We can choose to feel victimized or choose to rise above the adversity and survive. I like surviving.
I am still closeted, and only out to a few friends for both my diabetes and my RA. Why? Because there are so many people who judge you and want to give you bad advice and remedies. That's when you have friends who become non-licensed medical doctors. It's too frustrating. I know I'm taking a chance with my health by not coming out but I try to keep myself under control, and I'm missing a teachable moment. But again, I can't take the "unasked" advice that's thrusted upon me. It causes my BP and BG to skyrocket because half the time the advice is wrong.
My assistant at work thinks she's the next Dr. Phil/Dr. Oz rolled up in one giving out unsolicited advice about anything and everything. She thinks she's an expert because she previously worked in a few doctors' offices processing insurance claims.
A little knowledge can be a dangerous thing.
You hit on an important point Stuart. Until you've walked in a person's shoes, you can't really understand what he or she is going through. You can empathize, but you cannot really sympathize and feel those pains, emotions, and symptoms. I think that is what makes communicating with a support group and/or message board different. We all know or can relate to each other. We may disagree on something, but we know where the other one is come from and can relate.
Some of my 'inner circle' know but that's because they have problems that I have helped them through (cancer) or we share a disease/problem (diabetes, RA, etc.). For me to share with those that I work with that I don't already have a special bond with, it's not possible because 1) they are judgmental, and 2) they are work associates only.
Apart from the first 2-3 weeks after I got out of the hospital I have not concealed having diabetes, then it was mostly testing in private etc. I was very overwhelmed with everything that had happened to me and I also felt embarrassed, maybe that's not the right word, but I felt the need to protect myself for sure both in the survival sense and from other's opinions. But I quickly realized that this is nothing to be embarrassed about and even more importantly that it was really too difficult to try to conceal testing my bg, injecting insulin etc. multiple times a day. As I have said in another post here, most people are too busy to even notice what I'm doing and have no clue that it is related to diabetes.
Now I do whatever I need to do wherever I am( I don't usually test while teaching-my one exception) and although I don't constantly discuss diabetes with people if it comes up or I need to or choose to that is fine. I have had many conversations by chance with pwd or family members of pwd which have been interesting.
I'm not sure if tudiabetes played a role in this but I remember seeing instances of people here who conceal their D and those who don't and I understand the reasons for those decisions.
Same here. I feel exactly as you do; other than medical folks, only two friends and one sister know. This way, I can remain the "same old Sue" I have always been.
When I was first diagnosed, I tried to hide it from others. Shortly thereafter, I realized that I was the one judging myself most often. I realized that I hadn't accepted my diagnosis when my PA advised me to start on a pump. I closed down so fast and completely panicked, thinking that a pump was because I failed, not really understanding the technology. A friend of mine helped me start doing some real research (finding this site helped!), and then once I realized why some diabetics choose to go on a pump, I was hooked.
Now, I pull out my pump or meter when I need to, instead of finding a place to hide my treatment. I'm still coming out to family and friends, but really, that's because they don't live as close as we used to.
I'm in general, a very open person and it never dawned on me to hide it. I did start out going to the bathroom to test, just out of being self-conscious. Then I met my first other Type 1 (hi, Donita!) and when we had lunch together I looked around while she tested and realized nobody was paying any attention at all.
After I realized I'd been misdiagnosed and started learning more about Type 1 and LADA/Type 1 I became so involved in it all that I loved to talk about it. I found myself talking about it too much because most people aren't all that interested in the details - and as we all know there are lots of details! Now I gauge what I say by the interest people express.
I don't know how I would have handled it if employment was involved, or dating. I was diagnosed a month before retirement; I now teach part time but as an adjunct in a satellite location I don't have much contact with other staff. And dating isn't really a part of my life, so I don't have to consider that. Knowing me though I'd probably tell the person the first time we shared a meal!
On David's original question: I can't say that I "came out" due to TuD because I was never actually "in". But I do think that being part of this community has influenced me; I feel there is a "many of us" or "some of us" a lot in my speech on the topic. Also I feel the need to reach out to others with D. That too, though, I've learned to monitor. I've had a couple experiences where PWD's just really didn't want to talk about it, and that, I recognized, was usually due to their own denial. So when someone like just this morning says to me, "I don't know I'm probably high a lot, I lost my meter." I can make a choice to just gently say "you might want to get a new one, it's important to test", and move on or just plain move on (which isn't in my nature!)