As a type 1 diabetic college student whose had the disease since I was seven, one could say that I have "gotten used to diabetes." I get daily emails from Juvenation and after reading some inspirational and some depressing posts about people's reactions to diabetes (the forum or blog titled something like "the most ridiculous things said about diabetes") and also "My latest A1c," I can't help but realize that diabetes is consuming my life. Although this realization might seem obvious and common to many of you with the disease, it saddens me that so much of my life is taken up by it. I know I'm not the only one that feels this way, but lately I have been feeling extremely guilty about ridiculous things having to do with diabetes. For example, if I only have about 5 strips left currently in my meter case, I feel really guilty about the expenses that coincide with diabetes; strips, infusion sets, insulin, etc. Even though my mom even works for a pharmacy and we can afford supplies, I start thinking about all the people who can't afford supplies and it makes my stomach turn. I know I can't do anything about their situations, and I want to do more about it (I am currently trying to start a Juvenile Diabetes Advocacy group at UW-Madison) but lately it has become more depressing than normal. I feel guilty about my A1c, although last time I'm pretty sure it was a 6.8, which is not too bad, but it seems all that I do is constantly check myself in class, while I'm in bed, while I'm working out, when I'm at parties, EVERYWHERE. I can't even go to class without remembering to grab juice & a granola bar, my checker, my glucagon, etc. I need help thinking more positively about the disease because after all, I'm only 18 and have the rest of my life to deal with this. I feel guilty that my boyfriend has to deal with me when I'm low or high and although he's compassionate, I feel like he shouldn't have to go through the trouble of helping me. I also constantly worry about my dad, who also has type 1 and doesn't have a pump since he can't afford it. I feel like it's my fault somehow (I know it's not) and that it's my job to help him have better control, even though he's in his forties. I constantly worry about whether or not my future kids will have diabetes and it makes me sad that I even have to think about that when I know that other college kids only have to worry about the normal stuff like grades and their social life. If anyone has serious inspirational stories and/or recent stem cell news or new pump technology, that would probably make me worry less.
I am sorry to hear you are feeling that way! I can definitely identify with multiple parts of your guilty feelings. First though, it was brought to my attention by another Juvenation member to stop feeling guilty! Diabetes is stressful enough, please don't heap the guilt on yourself! You sound like you are doing a great job! An A1C of 6.8 is great! Testing often is a method of obtaining good control- I myself tend to be a compulsive tester- and packer of all my gear/ supplies when going anywhere so I can identify with that for sure. Recently I got a CGM, and that has helped a lot with my BS stress.
And I understand how you could feel like a burden to others, I felt like that myself, but I had to realize that 1- I am not a burden to those that love me (in fact I have helped others with hypoglycemia, etc...) 2- the more you share with your loved ones the more they can understand. People have stuff in real life, we have diabetes, some people have other crap to deal with too.
College can be a tough time, since you probably feel like you are the only one that has to be so careful about everything! I often felt like Debbie Downer, since I had to always think of my health and couldn't just be impulsive and spontaneous. I am pretty sure I had undiagnosed depression through college from the whole diabetes thing. I just started being more open about my diabetes in the last 3 months- I have had it for 23 years and kept it mostly to myself. From that I have felt a lot more liberated and my information has actually helped other people! When people know what you are dealing with they do want to help, whether that be emotional support or whatever. And sharing often opens doors for them to share with you too. That can bring strength, which can give you drive to help others.
It is a weird thing the emotional side of dealing with diabetes. I recently just started going to therapy and that has helped. I have also joined a local meet-up group, which it sounds like you are trying (keep trying there are definitely more T1's where you are, that probably feel similar). I also have joined a Team WILD - which is a diabetic women's triathalon team. You are probably more of an inspiration to people than you think.
I am not sure if this helped at all- and sorry it was so long! I felt like I was reading my diary with your blog though, and just wanted you to know you aren't alone with how you feel.
Your headline caught my eye. GUILT
I just became a member of Juvenation a few minutes ago and your post rang a cord with me.
I've been a type 1 for 22 years now and have gone through questioning myself just like you at a few points in my life. I still to this day feel the guilty about the cost of my supplies I put my own parents through. I remember cutting up test strips back in the day.
My parents would tell you, the cost they had to pay for my supplies, was worth the pain. So knowing that, has given me some closure on feeling guilty for my cost burden.
College is tough, I would say the hardest time while being a Diabetic. So many things, pulling in you in so many directions. It's hard to stay focused on your diabetes. From your post, I think you are doing a great job! Serioulsy! You seem so prepared, that's great!
Well you wanted inspiration, that wasn't it... lol...
YOUR an inspiration! I think the fact that you have come so far, and faught so hard is worthy of being inspirational. Diabetes on top of all that? Do you know how hard it is to be in your shoes without dealing with diabetes everyday? HARD! You are doing it all, with diabetes inturrepting you everyday, trying to get in the way, messing with your head, and everything else. You are amazing girl. You are a true inspiration to me. Made me write this response.
Because most people don't have diabetes in their way every single second of the day.... sometimes you don't get that pat on the back when you really should.
Most people don't know how hard it is to be "US" sometimes. I do though, so I am saying Offically you are an Inspiration and I wish you the best.
SO I think you
First and foremost, you are allowed to feel the way you're feeling. Do not feel guilty about that. Type One is exhausting sometimes. I describe it as an every second of every day disease. As long as you're not crying yourself to sleep every night, then you're fine. You're dealing with it and give yourself an enormous pat on the back for that. It took me 10 very long years to deal with it/accept it and then i finally opened up about it. And OH MY GOD, did it pour out of me. I started doing a ton of artwork regarding diabetes and it made me so happy to finally have these bottled up feelings out of me. I'm living my 20th year now and sometimes I completely have a pity party for myself and I deserve it. I am allowed to be sad and frustrated and whoa is me and throw angry fists in the air, but i also try to make fun of diabetes as much as i possibly can. I mean, diabetes can be really funny sometimes. The things that come out of my mouth when i'm low? Wow!! Funny stuff. I become a complete goofball. I've just tried to learn that every time i dwell on the bad parts of diabetes, it does nothing for me and i wind up being sad for a long while. Every time i make fun of diabetes, i have everyone rolling on the floor - diabetic or not. It's tough and though the technology has come leaps and bounds from when i was diagnosed, it's still tough. You're doing wonderful, please believe that. I have a billion and one diabetes stories if you ever need a good pick me up.
Man it's so hard not to write a long comment to this topic!!
Ginny, Bill and Aimee..thanks for the comments..they have made me feel a lot better about my whole situation, and while I am still worrying about everything diabetic, every day, I know I'm not the only one, and that makes me feel connected to you guys, and hopeful. Thank you so much.
p.s. Aimee, my friends tell me they love me when I'm low, too. :) I guess that has its ups. Stay healthy :)