What's the worst thing about having diabetes?

I ran a post last week asking if you could name 1 positive thing diabetes has given you. More than 50 people wrote in, many said new friends, this great site tudiabetes, they lost weight and got more healthy. Now, I'd like to turn this question on its head and ask, "What's the worst thing about having diabetes?" When I ask myself I realize my first feeling is just an overwhelming sense of "Oy...and a kind of heaviness and brain fog." Then I have to take a minute and think through all I do to manage my diabetes, including doctor visits and what to do at parties, if you're dating is it an issue for you? For me, the worse thing about having diabetes it's the constancy. The constant having to do something: count how many carbs are in that bagel. Figure out when to time my walk? Remember to get those lab tests done...I say sometimes diabetes is a second job because that's what it feels like. I'm curious what is the worst thing about having diabetes for you?

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Tags: about, diabetes, hate, having, thing, what, worst, you

Comment by Riva Greenberg on February 3, 2011 at 11:05am
Hi Katie, it hurts me to read what you wrote. It hurts me for you and your child. I want to say something helpful but I can't. I can't imagine what it's like to have to hurt your child to help your child. You help remind me that for parents type 1 diabetes comes with an extra special bag of challenges.
Comment by ladyrayne67 on February 3, 2011 at 11:15am
I agree, Katie that has to be so difficult...give him lots of love and kisses!
Comment by Papo on February 3, 2011 at 4:53pm
you can never forget it, this is the worst thing for me. You can play, run, love, sleep ... you can try everything, but you allways think "what effects does it haveon my BG?" You're allways under this sword of Damocles...
Comment by Donna H on February 4, 2011 at 4:18am
The lack if spontaneity, the horrid highs (hate them more than the lows), disconnect with my husband (he does not have diabetes and doesn't understand it), and fear of complications of diabetes.
Comment by ladyrayne67 on February 4, 2011 at 7:41am
@ Donna I so agree with you! It stinks the worry of the complications!
Comment by Brian (bsc) on February 4, 2011 at 12:19pm

Riva, you wrote:
Are there any things regarding your diabetes she is willing to be part of? Are there things outside your healthy regimen you still share? I think the balance is important. Then of course some people will swear their spouses are diabetes wannabees.

So the short answer is yes we share some things about diabetes, but the long answer is complicated. We have both shared changes in diet and she has made efforts to be aware of some things. She has joined me for some doctors appointments and come to support group meetings. But I started insulin in december and told her, yet it was only two weeks ago that she even asked why and cared to listen to the story. And while I suggested she got "gyped" she may still get lucky, she had an A1c last year of 5.8%, prediabetes and is conflicted by that news. And I know she is frustrated by wishing to exercise, but not being successful in making it happen. And you are of course right, there is much more to life than diabetes and we would all wish that we could enjoy all those aspects of life "despite" diabetes.

Comment by Riva Greenberg on February 4, 2011 at 2:39pm
bsc, it's interesting you wrote your wife has pre-diabetes. Maybe it is hard for her to see how well you're doing and have adjusted while she may be facing some big fears about her future. Of course, I have no idea about your relationship, but since it sounds like she's having trouble meeting you where you are maybe you can try to go to where she is. Sometimes a simple questions like, "Tell me what this all feels like for you?" is an opening where you can begin to meet.
Comment by Fashionably Sweet on February 4, 2011 at 3:15pm
The worst thing for me is knowing that it's never going to go away...I'm only 22 years old, and was diagnosed on my seven-month wedding anniversary. For me, that means that not only do my husband and I have to wait until my A1C is under 6.0% before we can start a family (while all of our friends are having babies); I'll probably also have to continue to work full-time after we have kids just so I can have insurance to be able to afford my diabetes care, something that never crossed my mind before. I can deal with all of the inconveniences, discomforts, and annoyances of having diabetes (most of the time, anyway), but it's the major life-altering things that get me the most. The fact that it isn't going to quit or take a break means I can't either. As you said, it's very much like having a second job trying to stay on top of it. It's that level of control and balance we're all trying to achieve...The point at which we can say, "I have diabetes, but diabetes doesn't have me."
Comment by Brian (bsc) on February 4, 2011 at 4:37pm
Did I not say life is complicated? I often felt that being diagnosed with diabetes is a life changing event and that you can go through a grieving process, just like Elizabeth Kubler-Ross describes. The stages are denial, anger, bargaining, depression, acceptance. The first part, sometimes called D'Nial is hard. My wife was not told she had diabetes by her doctor, it is hard for her to accept a diagnosis from me. I need to let her find it on her own way. I do hope she knows that I am here to talk and help.
Comment by LaGuitariste on February 4, 2011 at 8:46pm
I hate never, ever having the freedom to live my life the way I want to live it. I feel hounded, micromanaged and controlled by diabetes. Everything from when I go to bed, to what I eat, to when I exercise...all controlled by an invisible hand at my throat, ready to throttle me if I don't behave in a certain way. I usually try to not think about it because it makes me crazy. I just want to LIVE like I did as a child and young adult. Eat a cookie? Or three? Fine. Stay out dancing all Friday night after leaving work with friends? Why not? Spontaneously spend the night on someone else's couch if it's late and I'm tired? Go ahead. Now I'm a slave to pills, syringes, test strips, pen needles, refrigeration, carb counting, my CPAP machine, the clock ticking, ticking, ticking till my next mandatory task.

Yeah, I get sick of it.


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