It's been 13 years and I still feel like I'm all alone

It's been 13 years since I was diagnosed with type 1 diabetes. Actually, 13 years and 5 months to be exact. And I still feel like I'm all alone in the world.

None of my friends have diabetes. No one in my school has diabetes. Not even in my old school. I have no one to talk to who REALLY knows what I'm going through. I just want to lock myself in my room and cry.

My parents say they understand, but they don't. They don't have to walk around with calluses all over their fingers and an infusion site sticking out of their back. They don't have people constantly asking them why they make themselves bleed and what that weird black bag in their purse is. They don't have people stare at them during class when their insulin pump reminds them it's time to check their blood sugar. They don't have to deal with this. I do.

I tried going to diabetes camp. I went 3 times.The first time was so much fun, and I made great friends. It was nice to talk to people who knew what I was going through. But I was young and didn't talk to them much after camp.

The second year went ok. I was one of the only campers with a pump and the counselors did not get taught on the pump AT ALL. So when I woke up with a 500 blood sugar in the middle of the night and they told me to go back to bed without a correction, I knew I was alone in the world again. Of course I snuck myself insulin, because I knew it was the right thing to do. But I quickly found out at 6 in the morning when I puked my guts out and was in ketoacidosis that my pump was not working. I went to the hospital that day and had to have an IV put in me. Away from my fellow campers, into a building in a city where I knew no one. It was agony.

The third year I got sick again, this time not related to diabetes, and had to come home early. I wasn't even there for 5 days. Again, alone in the world.

So the three times that I had a chance to talk to people who knew what I was going through were ruined.

There are so many times I resent my life because of diabetes. I use to think it made me unique. I use to say "I am not defined by my disease. I am not a diabetic. I'm just Audrey, a girl who has diabetes."

But now, I look in the mirror and all I see is a freaky diabetic girl. The girl all the boys are afraid to date because they think I'm going to keel over on the first date, or give them diabetes. They don't understand it, and how can I explain it to them? They don't care.

I hate it....I just want to be normal.

I'm sorry for complaining and I'm sorry that I may seem like a Debby Downer. I just really needed to get this off my chest.

Hi Audrey.

It can be a complete downer to have diabetes and I think we have all felt that at one time or another. It can also be isolating. I've had diabetes for 14 years and I've just recently realized that I haven't met a single person with diabetes for the last 10 years. Once I thought about it, it really upset me. It would be really nice to have someone to talk to who understands.

I still haven't met anyone with T1, even though I've been trying. However, I've found joining juvenation and reading T1 blogs has really helped to talk to people "like me." You also might want to try to see if there are suporrt groups or social groups in your area for T1 diabetics. The JDRF has some listed on their local pages. It might also help to ask your parents to help you look for other T1 diabetics. We deal with a lot everyday to stay healthy and we need the support!

Good luck!

Audrey,

You have made a very wise move, to join Juvenation, and to write about the problems you are having. I am sure that within a few hours you will have replies from many of your contemporaries (I don't think I qualify). This is really a great place. We all understand what's bothering you!

Tom

 

Hi Audrey,

Your post is pulling at my heartstrings.  So much of what you said sounds so familiar to me.  There were many years of my life that I felt just as you do now.  Hell, I still feel that way sometimes.  I don't have any close T1 friends IRL.  I have one girl I went to D-camp with, who I still talk to occassionally, but we're not that close anymore.  I know a couple of other people distantly, but there's no one I can call or meet up with around me.

Like Abbey, I have found that both joining this site, and reading a lot of type 1 blogs , has helped.  A lot.  It is so relieving to read about how someone deals with this every day - how they handle different situations - and to know that they share the same frustrations I do.  Some of the things I thought only I had noticed or found annoying?  Others do too!

I'm not sure what the turning point is.  I've found that I feel a lot more at peace and accepted, the more I extend myself to the D community.  Volunteering for JDRF in different ways, contributing to this site, and starting my own blog have helped.  You're already taking a good step forward by sharing how you feel with all of us here.  We get it, and we've been there.  And we're here to help you through it.

Please feel free to send me a message if you ever want to chat. 

Kim

I also feel like being in school is a hard time to have D -- the older I got the easier it was to deal with. Other people are more understanding, less likely to judge you, etc after high school. The night I met my husband (freshman year in college), a group of people went out, and I ended up talking to him for hours after, mostly about my diabetes. He was so impressed by how well I dealt with it, he asked me out, and the rest is history. So, I feel like the D actually *helped* me get a date. (:

Hang in there -- I hope you can meet some people on this site that can understand what you're going through (caloused fingeres? check! lol).

Hello Audrey, I was diagnosed in 1945 when I was 6,and even the doctors did not know how to advise my parents. Not much was known about diabetes back then.  Things are so much better in modern times.

I did not know another type 1 for more than 40 years. You can find many type 1 diabetics here. Ask all the questions you want. We are here to help.

Have you looked for support groups in your area. The hospitals in my area keep in touch with diabetes support groups and have the phone numbers available.

Hi Audrey -

I can remember being in your boat. Being 16 with diabetes is tough! I found that the more positive spin i put on it, the more approachable people found the subject with me. People are afraid of what they don't know and it is scary to have someone with a "disease" that they don't understand (btw I HATED that word..."disease." I think it was the worst part to get over).

It does get easier as time goes by. I can remember one girl in my school who had diabetes before me and I thought she was a weirdo. Once I became diabetic, I realized that it was ME who was the weirdo!

The point is - if you give others the impression that diabetes is the horrendous challenge that it is, people will walk on eggshells around you. However, if you are up front and light-hearted about it (difficult as that may be), others will even forget that you have diabetes. It is not the scarlet letter that you think it is.

I've had the great fortune to meet many people with diabetes because of my career choice. In fact, it is my diabetes that led me down this path. Most of these patients feel alone. Absolutely alone. I think I've turned my diabetes into a positive aspect. It makes me unique and human. It also makes me a role model to my patients, children and friends. It is a bugger, no doubt about it. But its a challenge we have to face.

 

See if there is a JDRF chapter in your vicinity. Even young people can volunteer. It is such a great network of people and takes away that alone feeling.

i was diagnosed just 13 years and 4 months ago!! I agree there have been so many times where im fed up with it, its not like when you get fed up wth a firend and you need a break you can just walk away from that person, because in this situation the diabetes can kill youu. i have never been to camp, i have only been to a support group a few times, but now its mainly younger kids so i don't really want to go.! 

if you ever wanna talk just msg. me :)

I have had Type 1 Diabetes for 20 years and I still don't meet people that have Type 1.  I have met people who have had type 2 so it is helpful to talk diabetic language with them LOL.  However the most frustrating thing for me and when I was a teenager, was that people thought that you got diabetes cuz you ate to much sugar or because you were fat.  That drove me crazy.  I had an eating disorder and I was quite heavy in my teenage years and into my first year of college before I got serious about my health, more than that, I got determined.  I am 31 years old and I still have momments when I sit in my car and cry and feel sorry for myself.  I say, "If I was a normal person, I would be so fit and trim for the amount of time I spend at the gym, but no I have to quit running and eat something to stay alive. I can't just live all day off of salad and veggies because if I get low I have to fix it with damn carbohydrates." I get angry, then I get over it.  Having diabetes is a roller coaster ride.  It does get easier to manage mentally when you get older but it still sucks.  This site has helped me not to feel so alone and I like the posts about what your favorite glucose tablets are LOL...only diabetics would know how funny that is.  It helps to laugh at it and remind yourself that you have this because you are strong enough to deal with it and carry the burden and it is only making you tougher :)  Keep your head up chica...

NIcole

Hi Audrey. I understand what your feeling. I have had diabetes for nine years. I think we all feel alone with our diabetes, especially as a teenager, because of all the reasons you already mentioned. I have recently rediscovered juvenation and honestly reading the blogs and forums and writing comments has immensely helped me. Feel free to message me!!!!

Hi audrey I don't have diabetes but my son was diagnosed at 15 months and he is now 3 so we haven't had it near as long as you have...It's already getting old here.  The only thing that keeps me from obsessing over it is to volunteer and figure out how to raise money for JDRF so we can possibly find a cure.  We have done a garage sale, fashion show, sold rubber bracelets, tshirts tons of stuff and have met so many others with the disease.  I am now on the board of our local chapter and cherish those moments to get with others like myself and my son..

 

If you call your local JDRF chapter and share this with them and tell them you would like to meet some others like you I know they would be glad to help you.  You could also go out to meet newly diagnosed children or adults...I think if you get in touch with them they can give you much information on what you can do to help and maybe in turn that will help you see how others are dealing with it.

 

I am so sorry for you let me know if I can do anything to help!

 

Jennifer

Hi Audrey,

 

DId you go to Camp Ho Mita Koda? I see you live in Ohio. You are not that far. I went to an open house there and the young people that were on the staff

there seemed like great kids. Maybe you should try it again. 

My little girl hasn't even been to camp yet and already has a pen friend from the open house. 

There are so many kids with diabetes in my town it's hard to believe the same isn't true for Wooster. A boy down the street has it. We met a girl one year

older than my daughter in her school that has it and we met another girl on her swim team that has it too. There are probably more. 

The girl on the swim team goes to a camp in Slippery Rock, PA her mom likes. All three of these kids are on pumps. Your situation can get better. I think there is a saying that the more you try the luckier you get. You must know that there are kids out there that feel like you do and that meeting you could make all the difference in the world to them. 

 

 

 

Yes, I did go to Camp Ho Mita Koda. Unfortunately since I am 16 I can no longer go to camp. The last age you are allowed to go is 15. And unfortunately there isn't many people with type 1 diabetes in Wooster. At least, not people close to my age. Some are young, like 2 or 3, and I can't talk to them about my feelings. It sucks because I go to Triway, which is a very small school, so there are no diabetics there. Even Wooster high school does not have any type 1 diabetics that i know of. =(

The one is Slippery Rock takes 16 year olds. Maybe you could check into it. 

Ho Mita Koda also has other programs like bike rides that you could do too. 

http://www.diabetescamps.org/camp-directory.html?sobi2Task=sobi2Details&catid=5&sobi2Id=77

Here is a better link

http://main.diabetes.org/site/Calendar/1984799451?view=Detail&id=4121&utm_source=offline&utm_medium=print&utm_campaign=CAMPCRESTFIELD2010

It starts July 11th though so you don't have much time. 

We are definitely a minority:  I don't think I ever encountered any other type 1 diabetics in college.  Plus, with so many people getting type 2 now, there's a lot of confusion about how our form differs and what causes it.  All of that can be very frustrating.

I do have a friend online with type 1, though, and while my folks don't have type 1 themselves (mom is a type 2), they are very supportive.  So is my beloved.  I'm sorry the guys you've encountered have been really immature about it.  So many folks are ignorant enough about diabetes in general, never mind the issues specific to our diabetes type!

Wow Aubrey, you post makes me sad.  I am so glad you were so honest to share it.  I am much older and a married man and have lived with this disease for almost 38 years.  I never had a chance to go to camp and have been pretty much alone with my disease all of these years.  My wife still doesn't really understand what it is like to have this disease.  But she has learned to let me deal with it in her own way.  This web site is probably one of the best things that has happened for my regarding my diagnosis with diabetes.  It allows me to share my frustrations like you too have had and probably will have in the future!  

What I am learning is there is a lot of wisdom we all have uniquely to share here and I am thankful we can do it.  What I have learned in the last week is that the largest producer of insulin pumps has only about 300 thousand people in the world using them.  To me that seems a rather small group.  We could fill about three Los Angeles Colosseum's with all of us that use them.  

Enough from me.  Thanks for sharing.  It has touched me!