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On Being Sick and Young.

January 26, 2010

Yesterday, I wrote about the conundrum of whether to consider yourself “suffering from” or “living with” diabetes. For the most part, I said that I think of myself as living with diabetes. I am a happy, well-adjusted, functioning member of society with really great hair. But it hasn’t always been this way. Here is a story of suffering from diabetes:

My first emotional breakdown regarding my diabetes happened when I was 18 years old. It was in the middle of my freshman year at the University of Oregon and I remember sitting on a wide, cement railing outside one of the dormitories and sobbing, while my friend David sat next to me and was most certainly wondering what in the world he had gotten himself into. I remember telling David how tired I was from having diabetes, because I had had diabetes for ten years – ten years – and it was never going to end. For some reason having hit the decade mark actually hit me like a ton of bricks. I felt knocked over, out of breath. I was running a marathon with no end in sight. And I had to keep running.

I hate running.

I remember feeling distraught and discontent with the idea that at 18 years old, I was sick. It hadn’t really occurred to me before then that that’s what I was. Obviously I was intelligent enough to realize my life was on the abnormal side of things, having to test my blood sugar and wear an insulin pump and figure out how many carbs could possibly be in a chocolate malt milkshake. It was the first time, however, that I realized that I almost died. At age 8, my pancreas ceased to function properly, and with that went the life-saving hormone called insulin. Even though I was saved by the miracle of modern medicine, I was sick. The protected bubble of my childhood had evaporated and while the symptoms of low and high blood sugar hadn’t changed drastically, my own personal realization that my health was my own and it’s future destruction could possibly be my fault knocked the wind out of me. That’s a lot of responsibility for someone who was at the same age as the kids getting drunk at keggers and having unprotected sex!

I tried to explain to David what it was like to be 18 years old and to be sick. He was not sick, at least not with anything he told me about. I tried to explain to him what it was like to have a chronic illness, one that sat passively for periods of time before clubbing you over the head when you least expected it. I tried to explain how tired I was of having to worry about how everything I did impacted my health in some way. He thought I was being overdramatic. Maybe I was, maybe I wasn’t.

I remember realizing that this was forever. I don’t think I realized what forever was until I hit 10  years and I knew how long 10 years felt and I realized that I was going to have to do this four or five or six more times, depending on how long I managed to live. I remember already being exhausted, and sad.

David tried to say something to make me feel better. I remember him smiling, trying to make light of the situation, trying to make me not take myself so goddamn seriously. I glared. He said something about how a lot of things are forever, or a lot of bad things are forever, or something that sounded stupid then and probably still sound stupid. I remember thinking, “He doesn’t get it.” I thought that no one understood what facing forever was like. Most people are not stuck with anything forever. Almost everything that seems permanent can be changed. You can even change your gender. But you can’t change your chronic illness. It’s with you, for life.

Most people don’t understand what it’s like to be young and sick. Calculating the amount of carbs in your vodka cran, and wondering which would hit your system harder: the alcohol or the juice. Wondering whether to ask a friend to grab you an orange juice or if that would make you seem weak and not worth having around if you were going to have an “episode.” Trying to avoid looking like a social pariah. Trying to gauge the reaction of the guy at the bar and whether or not he’ll hit on the pretty blond next to you if you made a sudden movement that reveals an insulin pump attached to your stomach. Sexytime, eh?

There is nothing worse than be young and being different, and having a chronic illness made me different. It was easy enough to hide, and the fact diabetes allows itself to be hidden from view makes me forever grateful to it. But that doesn’t change the inner battle inside. The one where you are screaming with yourself that EVERYONE ELSE IS DOING IT SO WHY CAN’T I? I should not have to worry about whether or not eating pizza and drinking beer at two o’clock in the morning could kill me. I just shouldn’t.

When I think about what it took for me to overcome my emotional breakdown during my freshman year, I distinctly remember it not being easy. It took a long time, especially since I didn’t have much support at that time. I was – and still am – seen as a Leader! and Inspiration! and Influencer! and a bunch of other titles that suppose to make me seem like I’m perfect and put together and all matchy-matchy with my shoes and handbag. I went to therapy, even, for four months during my sophomore year to help cope with my life. Diabetes made me stressed and overanalytical. It made me think I was supposed to identify the problem in every situation and then fix the problem. Adjust the basal rate and increase the bolus ratio, right? Didn’t work so well in real life, as it turns out. I learned that I can’t dial down people’s emotions and I can’t increase the ratio of people who like to people who don’t like me. You sort of have to take it as it comes.

I am a fan of realizing the good that you have in life, and not taking anything for granted. I am also a fan of a good cry and punch to the pillow.

It took awhile, but I’m starting to appreciate the fact that I am a young woman with a chronic illness. I have the opportunity to speak on behalf of people who cannot, to educate those who are uninformed, and to inspire those who are scared. Through this, I know that I am not alone. I am not alone in worrying about health insurance and despising my lack of freedom to runaway . I am not alone in wondering if that bag of popcorn was such a good idea. I am not alone in wondering how much of my life I will actually get to live. But what I do live, I will live great.

I may be sick and I may be young, but I am cute and kick ass.

18 Comments
  1. January 26, 2010 10:14 AM

    Forever’s a long time, isn’t it? But, at least we all have each other. Even if no one else gets it, we do.🙂

    • January 26, 2010 10:16 AM

      And I am so lucky that the people who get it are AWESOME!!!!

  2. January 26, 2010 10:42 AM

    This sounds SO familiar to me. There must be something about turning 18 and going to college that just brings it out in a T1 because I went through the same thing at that time in my life. And the funny thing was that nothing changed in my diabetes management! I had always managed it on my own, even as a kid. But there was something about leaving home and being on my own and “growing up” that just made diabetes that much scarier. And so permanent.

    And still every now and then it will “dawn on me” (like I don’t know it already?) how permanent this thing is and how I’ll be doing it forever and how much that just blows. Another thing that really gets me is the “realization” that not everyone has to do this. It’s not everyone’s norm. It’s just MY norm. How nice would it be to just STOP all this crap and just eat, drink and live without all the hard work and worry attached.

    Those times don’t happen too often but when they do it just bums me out and nothing good comes of that! So mostly I just try not to think about it. 🙂

  3. January 26, 2010 11:05 AM

    I think we’re all entitled to our very own pity party once in a while. This is a horrible thing that’s happened to us, and forever is a long time. While I try to stay positive about it (most of the time), I also get overwhelmed with being sick. Lately, especially, I’m reminded that I’m not the same as my (non-D) peers.

    Your message here is so poignant; it really hits home for me. Thanks for articulating what (I think) is something we’ve all felt at one time or another.

    Oh, and you do have great hair😉

  4. January 26, 2010 11:21 AM

    That last line was brilliant.

  5. Christine permalink
    January 26, 2010 11:26 AM

    Great post!

  6. January 26, 2010 11:36 AM

    I haven’t hit my 10 year mark with diabetes (T1) yet, I’ve got another year and a half to go! But believe me, I’ve already had my share of breakdowns and crying over this disease. I didn’t get diabetes until after college. I didn’t even realize I could get T1 in my mid-twenties! The changes that happened in my life after my diagnosis hit me like a ton of bricks. I do feel lucky that I was older, more responsible and took charge of the management of the disease. I feel for you and how hard it must have been being so young. I’d think it wouldn’t sink in, the severity of it all, until you got older. When we are young, we think we are invincible.

    Thanks for sharing your experience and thoughts. I agree with you on looking at the good you have in life. I think that if I have to deal with a health issue, I’d rather it be something like diabetes, that can be managed and still live a long life. I know it’s hard to deal with it sometimes, but it doesn’t usually restrict me from doing too much. I had a wonderful boyfriend at the time of my diagnosis, who just loved me and supported me through it all, and is now my husband. I was able to have a child, though I was monitored closely. And now I pray that he doesn’t get diabetes. But I can’t control that so I’m just thankful I had a healthy pregnancy and presently have a healthy little boy. And I’ve got many years ahead of me for more good things to come.

    Our walk through life may be harder than others, and bring it’s share of tears, but we get to live – to experience, that’s what counts most.

  7. January 26, 2010 12:31 PM

    Well said. We all feel that way, even the guys. College guys. But you’re right, finding out why we kick ass and pursuing that helps wonders, not only us but those who are going through the same type of thing. We’re still “sick,” but not so young – at least the age brings wisdom that can be applied to make it seem less significantly burdening.

  8. January 26, 2010 1:55 PM

    Great post Allison,. I blogged something in a similar vein last summer, http://tinyurl.com/ybp8lgf, tho yours is much more eloquently written.

    Diabetes is all day/every day. Which means we have to have our game on all day/every day. We might slack a little here, cheat a little there, but there is really no escape from it coming into every single decision we make.

    I’m coming up on the 40-year mark and so little has really changed. But anymore, at least to me, it is like having brown (well mostly brown) hair and blue eyes. It just kinda is.

  9. January 26, 2010 2:47 PM

    Really inspiring post. Oh, I adore your blog so so so much.

    I don’t have diabetes myself but I feel that I have gained so much more of a better awareness on diabetes by reading your words. I commend you for being such a strong and beautiful individual.

    Best,

    Hannah Katy

    • January 26, 2010 3:21 PM

      That’s seriously one of the nicest, bestest things anyone has said to me. Every time I know that a non-PWD is reading and getting educated about life with diabetes, it makes living with diabetes just a tiny bit better. It’s the main reason why I wanted to start bridging my worlds in a more concerted effort.

  10. January 26, 2010 4:25 PM

    Great post Allison, very inspirational – your spirit. Just a question…what would you be thinking about if you weren’t sick?

    • January 26, 2010 4:26 PM

      Do you mean what would I be blogging about? I’m sure I would be blogging about a myriad of other things that interest me: travel, theater, languages, books, politics, religion…

      • January 27, 2010 2:36 PM

        Do you think that in some ways, you identify yourself with diabetes? That as much as it hinders you mentally and physically on some occasions, you also thrive on it, from beating the challenge, to writing and talking about it? That in some ways, having diabetes define how people look and see you because of the things you do and say because you have diabetes? In some parts, your inspiration and success is sourced from diabetes….so could you say, “Thank god, I have diabetes?”

        So my initial curiosity in the first question was, what would define you if diabetes no longer does? If that was a choice, would you want it differently?

        Kind Regards,
        -Thanh

        • January 27, 2010 2:56 PM

          I don’t believe diabetes defines me. I certainly hope people don’t look at me and see just diabetes. I am not an illness, I am a person. What I hope people see is someone who is living well, and doing so with a chronic illness. I don’t thank God I have diabetes, but I do thank God that He has given me the resources to handle it well and the support system to not go completely bat-shit crazy over it all the time. I also thank God that He has put in place opportunities for me to glean the positivity that I can. I hope that I inspire all people who are living with challenges in their life, and that something like a health condition should not stop them from living their dream.

          I am not diabetes – please understand that. Diabetes is a part of who I am, but there are plenty of other things that define me. I am a student, a traveler, a teacher, a writer. If I wasn’t talking about diabetes, I am quite certain I would have found something else to get involved in. It may have taken longer, since diabetes was essentially handed to me, but I’m sure I would have found something.

          I try not to dwell on what “could have been.” What could have been isn’t going to happen, so I take each day as it comes.

  11. May 16, 2010 2:38 AM

    Thank you for telling your story! I don’t have diabetes but I am chronically ill and I really relate to this. Way to make lemonade!

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