Still trying to cope with being diagnosed


(Austin) #1

I’m 22 and was diagnosed 2 years ago at 20. I always had a fairly “normal” diet. My primary care doctor told me it came as a complete shock because of previous blood work over the years showed no signs. For about 2 weeks I could drink whatever i wanted but no matter how much i ate, i always felt very bloated. I was given two different stomach medicines and finally blood work was done. On Friday when my blood was taken, my sugar was 620. I got a call the next morning saying get to the hospital now. At that point i couldn’t comprehend much and was very sick. I spent the weekend in ICU. Sunday morning i wake up with a doctor telling me my sugar was 740 on Saturday and that i was DKA. I had no clue What DKA meant but i knew 740 was too high of a number. I had numerous people with pamphlets, stories and tips on what to do. It was so overwhelming and still is to me. I keep thinking I’ll wake up from this dream. But I won’t. Does anyone have any advice or tipa on what they may have done to help themselves cope? I chose this site because I always get emotional trying to talk to someone in person about it. Thanks.


(Becca) #2

Well to start off I think you chose the right site. I have been diagnosed for 11 years now and everyone on this site is very helpful and caring. Having to deal with diabetes is hard and for me coping was never easy. At some moments you learn to embrace it and others its harder. However one thing I did learn is that people will look at you differently, some good some bad. I have met many people because of this disease, and I’ve been able to connect with many I wouldn’t have been able to before. Coping is hard and you have to find something that works for you but honestly for me it was just realizing that there are other people out here that aren’t “just like me” but very similar. Don’t be afraid to reach out for help for anything. I’m 19, like I said before I’ve been a diabetic for 11 years now and I learned that if you hold things in its just gonna make things worse. It’s okay to get emotional, it sucks but you’re not alone. You have to take one step at a time, eventually you won’t be emotional anymore. I use to hide the fact that I was a diabetic from everyone cause I thought they would not be my friend or something like that. I soon realized the only person that was hurting is me. Being emotional is apart of life. Let your emotions out. Feel free to direct message me if anything.

I hope this helped a bit.


(Bill) #3

Hi, Austin @AustinSpears15,

You’ve made a good choice connecting with people on this site. There are several of us who have been living with T1D for sixty years and more. As you can imagine, the experience level here ranges from us “old-timers,” to many who have have been recently diagnosed with diabetes. You’ve found a good bunch of people, and many others will chime in over the next several days.

I wish I could tell you that your wish to “wake up from this [bad] dream” will be granted, but it won’t. A diagnosis of T1D causes a person to learn to be vigilant and self-disciplined if that person wants to live well. And it sets the person on a continual process of learning and adapting. Our bodies are dynamic - what seemed to work yesterday may not work well today, or tomorrow. You learn to adapt and change with the dynamics of your body, your life, and your lifestyle.

At your level of experience (two-years-post-diagnosis) the most helpful things to do are read about T1D, and connect with T1D experts (physicians, diabetes nurse educators, dieticians, etc.) and people who have T1D. Look at the JDRF site to find helpful books to read. But don’t expect to understand what you read when you go through it the first time. You’ll have to read each book at least three times before what you read will begin to make sense - it’s a rather tough topic to grasp and then master.

When it comes to “connecting with people,” join the nearest chapter of the JDRF if there is one near enough. Make time to attend a weekend retreat for people with T1D - a week or more at a T1D summer camp would be even better. In those activities you will have opportunity to learn from others about how to live with this disorder. You will also begin to discover that what you have been feeling has been experienced, in one way or another, by all of us. You will find out that you are not alone; there’s real value in that.

When you visit with people in the T1D “community” (as above) you will hear the names of physicians, diabetes nurse educators, and other professionals who are known to be helpful in learning to live with, and manage, diabetes. Find out who the helpful experts are; then make appointments to visit with them about your diabetes. Learn from them. Take advantage of their insights. They will help to ensure that your diabetes is managed as well as possible.

If your parents are still active in your life, have them go with you to those activities I’ve described above (when it seems appropriate to have them there). We all benefit from family involvement when we are learning to live with diabetes, and even as we grow older. The more our family members know about T1D the more helpful they can be. And there are times when all of us with T1D “need a little help from our friends.”

You are still in what many call the “survival skills training” stage of life with diabetes - right now the goal is to simply “keep you alive.” But you are arriving at a point where you need to learn more. And the next “objective” in your “education” includes learning how to “make a life for yourself” in spite of your diabetes. I will warn you - many people “fail” in this stage of living with diabetes - they fail to learn how to manage their diabetes such that it supports their efforts to become the adults that they want to be. Those who can master this stage learn to live well with their diabetes, they complete their education, start a career, establish long-term relationships, and rise to their potential. Those who “fail” this stage are eventually in-and-out of the hospital, develop complications, and never find it possible to become who they might be.

So, I would encourage you to “read” and “reach out.” That may help you to begin to learn how to make a life for yourself in spite of your diabetes.

Good luck to you. I hope this helps.

Bill


(Flora) #4

Hey Austin. I really feel for you, I think 20 must be a really hard time to get this diagnosis. My daughter is 3.5, she was diagnosed this past October, and one of the first thoughts we had for her was at least she won’t know a different life. I have two older boys- 13 and 17, and it would have been a lot harder for them.
You have to be responsible for your life when your friends don’t have the same restrictions. You should be at the peak of your young adult freedom and you don’t have the same freedom.
I’m sorry you are struggling, although I think it is totally normal. I do think it will get better. Do you have a solid friend group? Do they know you have diabetes? I did read the book Think Like a Pancreas, which is often recommended here and there’s a portion in which he describes his college friends betting on his BG levels, which I actually found kind of heartwarming :slight_smile:
Also, almost everyone has something. You’ve got asthma and allergies and celiac and and and. You’re not an anomaly. This is your thing.


(Dawn) #5

I was your age when I was diagnosed. (I’m 40 now) similar to you I was healthy, ate well and was very active prior to becoming suddenly ill. My blood sugar was 650 and I was admitted to the hospital also in DKA. I still vividly remember all the doctors that came in along with the nutritionist , counselors, and yes even my pastor. I was extremely depressed and seemed to hone in on what everyone was telling me I shouldn’t do, couldn’t do, or wouldn’t do. What helped me the most was knowledge, The old adage knowledge is power really hit home. I read and researched everything I possibly could regarding diabetes and my condition. It came to a point where I asked questions of my doctor that even he wasn’t equipped to answer. I felt as though if I became as educated as I could and absorbed as much knowledge about my new diagnoses that I could Give myself some of that power back I felt like I lost along with my new diagnoses. As it happened that was my empowerment and it helped me get through the initial diagnoses and still helps me to this day. I’ve lead a full life , married, had a child and maintained an A1c of less than 7 with no complications thus far. Listen to your doctor and follow his or her instructions but listen to your body as well. Your education with this disease will pave the way for future success. Take care And God Bless.