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?

I agree, it’s always there and there is no escape or choice. I can take a vacation from work, leave dishes unattended in the sink, go to a party or not, paper instead of plastic, cash not credit.

(“Excuse me, but I’d like a refund… this really isn’t working for me.”)

Lows, i hate lows. I hate lows so much that I constantly am checking sugar levels. I am a type 2 and a lot of people did not realize that type 2 do get lows even though we are not on insulin. I take metformin and it prevents the liver from dumping glucose to the body. Fine if you are just sitting around but when working out or in a meeting and if I dont eat on time I tank

DEfinatly the carb counting. I’m not good with numbers and math. Oh and the draining “HIGHS” you get

OH AND THE LOWS SUCK! I’m hypo unaweare and it can hit me at almost anytime. I just check it all the time to be sure

I can deal with the blood sugar management. (Being OCD helps a lot.)

For me, the worst thing about having diabetes is knowing that something in my body is dysfunctional, and that that something is contributing to other health conditions that are inimical to longevity. The inability to control blood sugar without exogenous tools is just a symptom of this evil thing within me. Where and what is it going to strike next and when will it finally overwhelm me?

Diabetes is way too time consuming. As Lila said, if you want to manage your blood sugars, you do in fact have to become OCD. I don’t much like the highs and lows either.

For me, it’s the constant emotional strain. I am a worrier by nature and I tend to worry about diabetes related things all the time. Now that I have children, guess what I worry about? I long to be free of the fear and negative thoughts that diabetes pressures me to have. I know I am in control of how much I worry and about what I worry but, I have a hard time stopping. It’s exhausting and it would be great to feel carefree for once.

For me, it would be my family of diabetes police. Seriously, my parents, some aunts and uncles, and even cousins like to “police” me. Gets so annoying!

xxx

The loss of a spontaneous life. In all areas of my life.

It’s interesting that diabetes affects everyone differently - I’ve had a couple of experiences where I’m with t1 friends and we all need a different amount of insulin to eat the same thing. And, it affects us differently emotionally. I can relate to everything everyone’s said. And, yup, Trudy, way too time consuming. If you figure out little tricks it helps like I always keep my meter in the same place. Testing becomes automatic w/o having to look for it.

Its the Closet THING to me. I wake with it, have to care for it first, and It follows me through the day, interupts me daily, and goes to bed with me… Oh What a Companion…It gives me pain, The shots hurt me. I stick my fingers and each time think when will I run out and there will be just no more. I live with fears…what it will do, if I go to sleep and it goes to low, if I will be found dead. I thnk of all the family I have and there lack of concern for 39 yrs and at my Grave poor Jim will be the only one that cared, and he will have to listen to people whisper that Oh She had IT since a teen and I guess SHE didn’t take care of it. They will never know I died from a Low BS and NOT A HIGH ONE. I think about this all the time…its sick I guess…

The hardest thing is that everyone around me thinks I should be able to control this perfectly and and be honky-f-ing-dorey.
I wish.
I try, I do my best.
But its just not that way, is it?
Sometimes I wish they could have my D for just one day.
But then I realize I wouldn’t wish this on anyone, not even for a day.

I feel for you Hismouse. Have you thought about doing what you can for your fears that you can do something - like get a CGM to warn you of low lows? For some of our fears we can do something. For the others, let a little light in. When you can turn your mind toward the things that are still OK, and make them a little bigger in your life. Where we focus our attention tends to get bigger, focus it on the bad, the bad feelings grow, focus it on the good and more good will grow.

The hardest thing is that I was diagnosed in middle age and my journey to health has been my own and my wife has not been able to share it with me. I eat much healthier and I regularly exercise and go to the gym. I can climb mountains, ride bikes and run, these things she cannot do and does not enjoy. I do all the shopping and cooking in the house because I need to control it. I have friends in the diabetic community that she does not share. And there are people at tudiabetes who know more about what is happening with my diabetes than she does. The hardest part is that my wife has not taken the same path I have and we have grown apart as a result of diabetes. Perhaps diabetes is like a gift, and she was just gyped. (oops, is this the wrong thread?).

That’s funny bsc, how you ended your comment, but not funny of course that it has created a separation since your wife doesn’t share your experience or enthusiasm it would seem for doing the healthier things you enjoy now. Few people are so open to say this, but it must be more common than we think. 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

Living with the fear of losing my eyesight, my legs, or even my life due to this disease.

I hate that I am viewed by insurance companies as defective and therefore, more often than not, uninsurable. My husband and I are self employed, and I feel that I am being forced to choose between expensive, second rate health care (where I pay for nearly everything out of pocket) and my livelihood. I get so discouraged with being turned down for health care coverage, which has happened numerous times in the USA, Uruguay and Argentina, where I have lived since my diagnosis.

I spent the first 10 years after my diagnosis worried i would go blind. Year after year after year my eye doctors were amazed my eyes were perfect. It’s been 39 years since my diagnosis and there’s no sign of retinopathy and I no longer fear big complications. Maybe it takes time to see the worst may not happen and to enjoy what health we have while we have it.

There is not one “worst” thing about my son having diabetes. I hate poking him with needles, I hate seeing him suffer, I hate trying to explain to him (he’s three) that he can’t have a sucker because his sugar is too high, I hate that others see him as “sickly”, I hate that neither one of us has slept a straight 8 hours since diagnosis, I hate going to bed at night knowing he might not wake up, I hate that very few of my family members will hang out with him alone for fear of something going wrong, and after a horrible low the other night, I hate seeing my son have a seizure, and above all, I hate feeling so helpless.