Need help with a tough question

I don’t really know how to phrase this, so I’ll just be frank.

Is having T1D a big deal? I’ve had it for about two years now, so I’ve lived with it for a fair amount of time, but sometimes I feel like I’m making a big deal out if nothing. Or possibly I’m having too much pity for myself. I just don’t want to come off as self-centered to other people…

Your thoughts?

It varies... a lot actually. I know a bunch of T1s that don't want T1D to define them. And I know a handful that openly incorporate it into their daily life.

FWIW, I wish I made my T1D a much bigger deal when I was first diagnosed. I was in the mindset that diabetes would never define me. I didn't share with friends and family. I dealt with it by myself and slowly started to ignore my health. I paid the price. But now I eat, sleep and breathe diabetes (I work at The Endocrine Society) and love to share and talk about it.

I'm at a point where I really feel that it does define a big part of my life. It affects what I eat, how I plan long travel, how I exercise, doctors I have to see and how I deal with sickness. Personally, I'm comfortable with that. I try not to push my needs on other people if they don't want to know, but at the same time, I expect people close to me to respect what I need to do and more importantly what I can't or shouldn't do.

You'll find a balance, I'm sure. My only advice would be to find people that you can feel good around and share what you're going through. T1D is a big deal, but it shouldn't make you feel defenseless, weak or needy.

BTW, I used to be borderline addicted to diet mtn dew. Love it!

Dennis's advice is great.  Diabetes is a big deal but you learn to live with it.  It's our reality.

As a kid growing up with diabetes my mom didn't want me to feel like a victim, so she'd say, "You're lucky to have diabetes.  Some kids have cancer."  While there are things worse than diabetes, the reality is that diabetes is a big deal.  And I wasn't lucky to have it!  

What I've realized over the years is that even though it's a big deal to me, others are not going to understand what it's like.  They just can't.  

And I can't understand what it's like from their perspective either.  I can imagine, but haven't had to live with my husband's perspective of having a wife with a serious disease that she doesn't control perfectly.  Or my son's experience of having a mom with an illness that occasionally messes up family plans, like last year when our family day at the state fair was cut short because my pump infusion site came out and my blood sugar went up to 500 before I noticed.  Or my mom's perspective of being by my bedside as I was in a DKA coma during college.  

I've just celebrated my 36th anniversary with diabetes.  That means that despite a few rough times, I've had over 13,000 days of doing something right because I'm still here, complication-free.  

Like Dennis said, diabetes is an itegral part of who I am.  But it is only one part of me.  I don't fear it.  I don't ignore it.  

You will make peace with your diabetes too.  It just take time but you'll get there.  Take care.


I echo everyone else, too. How old were you when you were diagnosed? I got it when I was 4 (I'm now 26), and I think that impacted my viewpoint of it because life with diabetes is the only life I know. I think it would be much harder, and a much bigger adjustment, to get it at an older age.

What specifically do you mean about making a big deal out of it? For, it's always been a personal big deal and my number one consideration, and I have worked extremely hard my whole life to keep my blood sugars normal, but people don't know I'm diabetic unless I choose to tell them. It definitely does not define me, but similar to what Jenna said, it is a pretty individual battle.

For me haveing diabetes is what gave me a new outlook on life it gives me something to be pround about. I do make somewhat of a big deal out of it i see it as a way to serve to others by talking and helping others with there diabetes. I never felt like i belong to any community untill i found i had diabetes so it goes by what the person feels, thinks, belives, some people don’t like to be fuss over because of there diabetes. Look at what you want as person with diabetes and do what feels right to you. sending my love and best wishes to you.