It's been over a decade and I still can't cope


(echens) #1

I don’t really know what I’m looking for here. I don’t know what exactly I need to feel better, I’ve just never had the opportunity to connect with someone else who could understand. I was diagnosed when I was 11, I have no siblings, and my parents wanted nothing to do with me being sick because they considered it a burden. For the last year I’ve had a very accepting and supportive boyfriend, and it’s the first time I’ve had a person “be okay” with my illness, but I still have such a hard time putting up with this disease myself. I just feel like I have no time to deal with other things besides my condition, and it makes me so sad even after 12 years. I want to be positive about the future, but I usually end up worrying about it. I’m tired of being sick, I’m tired of never having a break from dealing with this, and I’m tired of being sad because I’m sick.


(joe) #2

hi @echens Elizabeth,

I get it. I had depression for years with this. Your irritation and the way you are talking about it actually makes me guess you are ready to move on. I am no genius, but after years of anger and depression, this is what I learned:

if you accept that the world is how it is, then your happiness, sadness, or depression then only depends on how you react to the world. if you work on your reaction, you end up feeling different.

for me - there is no “after this”. there is only now. diabetes isn’t going away, it isn’t going to get easier. if you wait long enough for “after this” you can waste an entire lifetime.

while I think it’s great you met someone who accepts you, it is far more important that you accept you. you can do it, it starts with being sick of being sick.


(Dennis J. Dacey, PWD) #3

Hi Elizabeth @EChens,

I can personally relate to you and how you feel about being stuck with diabetes and how it could, if you let it, rule your life and affect how you look at the world. That is sort of how I was during my first decade, didn’t tell anyone and really never admitted to myself that I had diabetes. Now that I’m in my 7th decade loving with diabetes I look back and see that I’ve accomplished more in life than many, many “non-diabetics” around me.

What happened? I met someone who cared for ME, encouraged but didn’t force me to first care for my health and conquer the world. Yes, now we are in our 52nd year of married life with a couple of wonderful kids and grandkids who keep us young feeling.

Think of yourself as a person who “can do”, there are not any limits. Manage your diabetes around your high goals and what you want to do. With your pump and CGM activities and ambitions should be limitless - I have yet to move to CGM.

Think positive and good luck!


(Ariel) #4

Hi @echens Elizabeth,

You are not alone. I know it may feel that way sometimes, but you have many out there that feel the very same way as you. Growing up with T1D (I was diagnosed at four), I felt very similar feelings as you are are. So I decided at a young age to become a health professional so I could be helpful to those that are having a hard time with T1D, as I used to. I’m 26 years old now, I’m a Registered Dietitian, and am happily married with a 20 month old baby boy (very healthy). Having that support can make such a difference, but also knowing that you can have a relatively normal life can make you feel better too. Elizabeth, I’m so sorry that you haven’t had the support from you’re family like you’ve needed, but know you have the ability to help others T1Ds that need a friend. You can email me anytime (ariel@hapibody.com). Also, I have a super low-key T1D “Getting Fit with T1D” FB Group if you want some T1D friends, we actually just started a 14 day workout challenge. https://www.facebook.com/groups/214915882326431


(prettygirl427) #5

It is very hard having diabetes. I have had diabetes for 17 years and I hate it. It’s very hard to be optimistic but you have to. I think that us with diabetes should have a support group where we can meet up and vent. I’m not sure what this site has to offer but hopefully we can start something. I was depressed but now it’s not as bad anymore. I hope that I can help you and you find this post helpful. Just remember you have to have a positive attitude that one day things will get better.


(Debbie King) #6

Hello fellow T1D. I’ve had T1D since age 7, Nov. 1971, my birthday, as a matter of fact. My older sister Grace was dx’d before me, at age 1 1/2. For my parents to see the same symptoms in me, they knew that I needed to get to St. Louis Children’s Hospital, and yeppers, they were right. It’s been 45 years now. It’s been a long road, for sure. You, my friend, have no idea of the changes that have come since those days. Serious. We now live in the era where there are no more test tubes of 10 drops of water and 2 drops of urine and a Clinitest tablet into a test tube (truth) to bubble up, then compare to a chart, and to that the decision was made as to how much insulin was to be injected in the MORNING. Yep, one shot a day. The “fast” acting Regular insulin “then” was a beef/pork that took 4-6 hours for peak, and the “long acting” insulin was NPH, which peaked at 8-10 hours. Mind you, the fast acting barely took care of the AM “urine sugars”. It didn’t even begin to cover the breakfast, nor the lunch. Then the long acting was to cover the rest of the 24 hours. What a joke. However, I am here to tell ya that things have changed a lot since then. What used to take 60 seconds for a finger stick to relay our results on a BS meter, now takes FIVE seconds. And it’s blood testing, not urine testing, which is waaaay different. And the insulins today, omg, incredible. Get a Good Endocrinologist. Talk to ‘em about an insulin pump AND about a CGM (continuous glucose monitor). Amazing stuff these days, i’ll tell ya. And no, I do not have all/any of the answers to help you get thru this, except for to let you know that there are a lot of us out here who are going thru the same as you, and we just keep on pluggin’ thru. Today the technology is immense: Our insulin pumps are simply our pancreases on the outside of our bodies. <----Period. I wish you well in this comprehension, because it’s reality. Yes, we all need to count our carbs, the energy we expend, …and so many other things that we’ll always need to take into consideration, however, we have great fortune in knowing that we’re all in this together. We all stand next to each other, and someday you too will be one that another leans on. If you’d like, you can FB me. Debbie King Geile. Anytime, k?


(Dennis J. Dacey, PWD) #7

Hi @prettygirl427, This site does provide some really good support, understanding and sharing of what is like to live with Our TypeOne.
If you look in the “Events” and “Resources” tabs at the top of the page you may find activities near you where you can meet people with whom you may relate. I strongly recommend that you find a “TypeOne Summit” and plan to attend - I attended one and asked a question/made an observation during a panel Q&A and at the break following I was approached by some attendees inviting me to meet with them.


(Dennis J. Dacey, PWD) #8

Hi @DebbieKingGeile, and welcome to this interesting and diverse group; I noticed that you just joined.
You tell a wonderful story so concisely bringing us from “The Dark Ages” of diabetes management to this awesome new world of living and being active and productive while with diabetes. I too remember the meaningless urine testing which may have revealed where our glucose levels had been several hours before, boiling glass syringe and dull ‘horse needle’, and waiting two days for the hospital lab to provide results of a blood sugar test with blood drawn from an overused and bruised arm vein. I love progress!

Debbie, please continue sharing your positive views on living with diabetes; there are many people [here] who will benefit from your experiences - both your success stories and those instances where you may have done better. And congratulations on your 45 years! I too was diagnosed on my birthday - my 16th, although I know I had ahd something wron for several months and just wouldn’t admit anything. Yes, I ended up in hospital and spent two weeks there overcoming “acetone poisoning”.


(Debbie King) #9

Ahhh, Dennis (and fellow T1D’s), Acetone: the fruity scent on our breath when our BS is high, plus from Every Single pore/orifice in our bodies emanates that scent. I have several T1D’s in my home town with whom i’m close to. I’d suggest that those who’ve been dx’d to somehow someway have a shoulder to lean on/and as well to be the shoulder that others need to lean on. Sometimes we just need to talk about our condition, sometimes: They do too. However, one does need to be true to their own-selves in the sense of knowledge. Do your homework. Don’t let another inform you “how” to adjust your basals. Know how to adjust your carb ratio, listen to your Endocrinologist. However, I personally do make my own adjustments with my pump, as well with my Barnes Hospital Endo, I’m the one who walks in my shoes, my endo doesn’t. And seeing them every 3 months is so very necessary because of what they see on my printouts (from my pump read-outs from Carelink - a USB that downloads pump info to their computer – which can as well be done at home with your own computer. Talk to your Endo about Carelink, serious. There’s a wealth of info that we all can share, that’s for certain. Back in '74, and again in ‘79, my sister and I went to 2 Diabetes Camps, here in Missouri. One called Camp Lion’s Den, the other called Camp EDI (Exercise, Diet, Insulin). And wowzers it was just awesome to meet a hundreds T1D’s, and having fun, and letter writing to each other - postage was 9 cents, and yeah: once in a great, great while there was a long distance phone call allowed between us. Times were tough then. Nothing was taken for granted. Ever. Literally, my sister Grace and I would drain the insulin bottles to empty till we told our parents we were out, as in: that very day. And our hometown pharmacist would open store (on Sundays), just for us. I’ll never forget the goodness within him. i’m sure that the repeat calls to him got him pissed at times, but he did it for us. (thank you Barry Naeger.) Folks, be good to yourselves, and your future of this condition, read, read a lot. If one allows to let this condition rule you, nope, don’t let it. Get a grip, and be pro-active with your life. I know, easier said than done. I know. We all have different situations that impact our lives, thus our health. If one was to ask me about being a diabetic (these days), (and they have), my answer is: holy cow: my pump and CGM are My External Pancreas, they have NO idea of the impact that these things have made in my life, and I basically think: You have No idea of the major changes that the years have been made. It used to be: she’s so sick, she has to be on FOUR shots a day, and tests 6 to 8 times a day. Are you kidding me? See, they have no idea of what “BS’s/our well-being is”. I don’t live a perfect life, by any means, however, things have changed for the better, no doubt. When I was dx’d in 1971, Mary Tyler Moore (also a T1D), said a cure is just around the corner… well, we live in this era where it is the most flippin’ best ever. Trust my words. Live well and be grateful.


(jennagrant) #10

It’s normal for your feelings to ebb and flow. No one loves diabetes but have to admit it doesn’t seem like as big a deal as I’ve gotten older. Just get out there & live a good life. We’re rooting for you!


(Debbie King) #11

Hi. I would like to have a do-over with my recent posts, which I certainly had intents of being next to you with what you’re going through. Hun, we’ve been there, we’re still going thru it, We All will be going thru these trials. Always… Perhaps getting strength through those as T1D’s would be a good start. I feel that this site is an incredible site for us all being able to express ourselves. , It’s a great re-enforcement for you, and others to understand that this condition does control a huge part of our lives. We get it. Honestly. I wish you well. f/b me if you’d like Debbie King Geile. My best of all to you.


(Debbie King) #12

And I, as many others, would like to know how you’re doing.


(SuperSam101) #13

@echens try thinking about what your life would have been like if you never got the disease. Think about how it could have actually affected your health (food wise). That’s all I can say might help. Other than that, don’t be afraid to tell your boyfriend as much as you can about the disease. The more he knows the better. :wink:


(echens) #14

Hi again,
It’s wonderful to read all these kind words of support and encouragement. I know DebbieKingGeile mentioned connecting with others on Facebook as well. I don’t have one, however, I think it’s a great idea to communicate more with other people who have type 1 and are in this same situation. Are there other ways to reach out to this demographic?
Thank you everyone!


(AML127) #15

I totally agree with you. I’ve had t1d for 32 years. I was diagnosed in kindergarten. I understand you not receiving the support you needed. When I grew up my parents way of supporting me was taking me all over for prayer. They expected for me to be healed. So I was filled with false hope and never felt supported. I also didn’t and still don’t feel loved. As a kid to see others get ‘healed’ (even though I now think they were props) and I never got healing—-I felt very unloved and unworthy.
My life has been rough becomes of this disease. I’d say my life has been wasted. I’m so full of pain. And I hate this disease. I often wish I’d died at diagnosis. I’ve only met a few other people with t1d. And they don’t seem to understand me. They don’t have the struggles that I have. So I haven’t found it helpful to dine others. It’s been yet another waste. I hate the negativity. I want a positive life and a healthy life. But that’s not what my life is. I still struggle to find supportive people that I desperately need In my life. Every time I try to let folks in. They hurt me and never imswrstand my disease or struggles.
I say all of this to simply say. You’re not alone. Best of luck. And I hope you figure out a good solution for you. Don’t let your life be a painful waste like mine.


(vmccord) #16

@echens, I am so sorry your parents were not there for you. That’s not right. Please consider finding someone with whom you can work. That was code for find a good therapist. It is really helpful to have your feelings validated that you got short-changed in the parent department. Our big brain tells us that we got short-changed, but sometimes deep inside we aren’t so sure and wonder a bunch. It’ll also be helpful to hear just how amazing you are for having managed all these years all by yourself.


(ralph) #17

Look at it this way,your a member of the Elite and everyone else,just normal !