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More Than

December 7, 2007

There are a lot of things about diabetes that I have become used to. I’m used to waking up and testing my blood sugar. I am used to carry around a glucose meter in my purse. I am used to calculating carbohydrates based on it’s comparison in size and weight to a slice of bread. I am used to people asking me if my insulin pump is an MP3 player (and before MP3 players existed, I was used to people asking if it was a beeper). I am used to buying Juicy Juice boxes along with a bottle of wine. I am used to explaining the differences between type 1 diabetes and type 2 diabetes and I’m used to parents and teens emailing me questions about how to cope and get used to everything that is diabetes.

I don’t like it, but fourteen years will do this to a person.

But there is one thing that I have become used to and I’m not sure that I’m okay with it anymore.

I have become used to being the Diabetic.

It was sneaky, really. I hardly knew it happened. All I did was decide one morning that I wanted to help teens manage their diabetes a little better and maybe meet some new friends, and the next thing I know, I am the poster child for a disease. My inbox fills up on a daily basis with requests for advice and ideas for projects and I can literally sit down with a person for two hours and not talk about anything else except diabetes.

I was okay with it at first. For the most part, the diabetes was segregated from the rest of my life. No one in my college classes asked me what my blood sugar was. My RA didn’t knock on my door to make sure I had stocked up my drawer with juice boxes and glucose tablets. My friends don’t read my blog or ask me about my websites. They know about it, they support it, but unless I bring it up, this is all. In fact, the most any of my friends ever said when we were together was, “Are you doing okay?” I think the covert implication of what they meant made me feel more comfortable. It was a question that you could have asked anyone, but with me, it meant something specific. And I could answer, “I’m great” and that meant exactly that.

When I moved here, essentially everyone knew that I have diabetes. It wasn’t a secret. The story of how I was hired goes like this: In my junior year of college, I met Sean Hughes, of DiabeticFoodCritic.com. He used to work at a PR agency and he told me that when I was ready to graduate and look for a job that I should send him my resume. So I did. Just so happens, his friend from that PR agency was looking for someone who knew about blogging to work in the growing digital media department. He recommended me, I had the interview during my trip to NYC in March, and three weeks later I was hired. My boss knew I had diabetes before I even met him.

The rest of my experience here, which has been for the most part amazing and wonderful and pretty much everything a straight-out-of-college girl could ask for. Except for the constant and unrelenting identification that I have diabetes. They don’t tell me I should be eating that and they don’t tell me about their dead grandmother (thank God). Because I have already been identified all as The Girl Who Knows Everything About Diabetes.

Which, I guess, leads people to believe that’s all I want to talk about.

Tonight was our holiday party. And in the course of three hours, I had not one, not two but six people talk to me about diabetes. The first conversation was fine – in fact, the guy actually asked me if it was something I wanted to talk about. We were on the bus driving into the city, so I didn’t mind.

But it kept going. They were even seemingly casual comments like, “How are you doing? Is everything okay with the drinking and the blood sugar?” Yes, Mom.

Then there was another person who wanted to tell me about how he had to buy syringes for his type 2 diabetic father and asked my opinion of how often one should repeatedly use the same syringe. However long you want? Or better yet: I don’t care.

And another one who wanted me to explain how the insulin pump worked while I was bolusing for my vodka cran. Can I please just bolus in peace? I really don’t feel like giving a biology lesson at a New York City night spot where I’m yelling over the obnoxious pop music.

Then there was the joke. In any other circumstance, I probably would not have minded much. It was a reference to a cupcake I was given by a colleague’s girlfriend a few months ago. It left me staggeringly high because some alcohol lowered my blood sugar, convincing me at bedtime I would be fine. I awoke at 5 a.m. with a blood sugar topping out at 519 mg/dl. The next day I joked that the cupcake almost killed me.

Tonight, out of the blue, he says, “No cupcakes for you!”

Excuse me? Was that really necessary? In my opinion, I can joke about diabetes. I have the disease and if I want to make fun of it and myself, that’s one thing. But not anyone else. It’s not funny and it’s not appropriate and it’s certainly not welcomed.

I left the party. Hasty, perhaps, and it left me in the cold, cruel Manhattan world. But I had to. I was on Typecast Overload and I thought I would bite someone if anyone else even breathed the word “diabetes.” I eventually came back, distraught and upset, and no sooner did a co-worker calm me down that another co-worker said to me, “Oh, you’re the diabetes expert, right?” I was so exhausted that I had nothing left in me but to say, “Right.”

It’s been fourteen years since I was diagnosed with diabetes. It’s been over seven years since I officially decided diabetes advocacy was something I wanted to do. It has been a wild ride, and it’s been amazingly fulfilling and I have no regrets about what I have done.

But tonight, on my drive home, I couldn’t help but wonder if I have become too much of a diabetes advocate. Have I gone above and beyond the call of duty so far that it is actually becoming my entire perception?

We have had several debates within the diabetes community about the use of the word “Diabetic” and how some people believe that too fully identifies someone with the disease. That by using the word “diabetic” they are in fact no longer a person but a disease.

Have I truly become a Diabetic?

It’s a strange, disconcerting thought to have when you realize that you are known mostly for being sick.

There a dozens of rash reactions I could have towards tonight. I could quit my job. I could quit my blog. I could hide in the bathroom every time I want to test my blood sugar or bolus some insulin. I could snap at people, “I don’t want to talk about diabetes!”

But mostly, I just want everyone – all the parents of children with diabetes, all my fellow bloggers, all my colleagues at JDRF and the other diabetes organizations that I’m involved with, all my friends, and my family, and my colleagues at my Real Job – that I am not diabetes. This is not the only thing I want to talk about. This is not the only thing I am interested in doing with my life. This is not the only way I want to impact the world.

I am more than this disease.

14 Comments
  1. December 7, 2007 2:59 AM

    Allison,
    I’m so glad you posted this. I have a lot I want to say to you, but right now tears are welling up in my eyes and I’m not totally sure where such a strong reaction is coming from. I empathize with you, though I can’t quite imagine what its like to be like a posterchild for diabetes. I do know that since I started my blog more and more people associate me with my disease, which I don’t like.

    I am leaving my teaching job at the university in Taiwan on 12-22 and I am now known as “The Foreigner Teacher Who Has Diabetes So Bad That She Is Leaving the Country.”

    Great. Just great. Everyone knows about it-all my students, all the people in my office-people I don’t even teach are writing me to ask if I am okay, which should make me happy but is kinda annoying me.

    We are all more than this disease and while I don’t mind being called a diabetic, I don’t want it to stop there. I won’t accept being only a diabetic-what kind of a life is that? Who would want that? I am sorry that you couldn’t enjoy your party in the way you would’ve liked and I’m sorry that people just don’t seem to get it. Maybe they just wanted a way to talk to you so they used what they knew without thinking how it would make you feel.

    Anyway, I am thinking of you and sending hugs to my amazing new friend Allison who is a brave, intelligent, funny, empathetic writer, trailblazing young woman who yes, just so happens to have type 1 diabetes. But even though I only know you through your blog, your diabetes is not the first thing I think of when I see your photo or read your blog. I just think Allison–that cool girl I know through cyberspace.

    P.S. Did you ever see that stupid scene from “The Office” where Michael Scott is talking to Oscar saying “Your gayness does not define you.
    Oscar: Thank you Michael.
    Michael: Your Mexicanity–that’s what defines you.”

    My point–Frankly, some people will just never get it!

  2. December 7, 2007 7:53 AM

    In my mind you are definitely not “diabetes”. Although I only know you because of this crappy disease. I think you are so much more than a “poster child”. You are the amazing woman who moved across the country to start her adult life, you are a friend to many, a photographer, and the list could go on and on. This is one of my biggest fears about “outing” myself completely diabetes wise. I do not want people to police me or become over bearing with questions. I just wish that there was more common knowledge about both types of diabetes so that we would not all become “the diabetic expert” or the “diabetic girl”. We are people with diabetes and yes it is a big part of our lives, but so is any other disease. We may or may not know a lot about it. But that does not give people the right to treat us any differently, than they would any other person. My friend once said if you talk about cancer that it stops all conversation. I then joked that I was going to tell people my pump was chemo so they would leave me the hell alone. Do NOT hide in the bathroom, you have every right to live the most normal and amazing life in spite of diabetes.

  3. December 7, 2007 10:14 AM

    Allison,

    I work in a diabetes related field so I get a lot of questions, not just about my diabetes, but diabetes questions in general. I understand how you feel about it being overwhelming, I did not want my post to come off in the way that you were wary about it.

    This blog was one of the factors I started my own blog!

  4. December 7, 2007 12:09 PM

    This was a great post, Allison. I can imagine it would get really old to always be the go-to person for anything diabetes related. Perhaps people at your work will read this and understand that you are more than your disease, that you are a person who needs to just be a person, not the Diabetes Poster Child. I don’t know how you could say all those things to their faces, but they do need to hear it and this was a nice, non-confrontational way of doing it.

    I have the opposite problem around here – no one wants to hear anything I have to say about diabetes (in my real life, not online). They just sigh and roll their eyes and change the subject. It’s very discouraging. I’m not talking about diabetes 24/7 but when I’m asked a specific question about it, I expect the person doing the asking to at least hear me out, y’know?

  5. December 7, 2007 4:32 PM

    Allison,
    For the first year or two after diagnosis, I felt like I truly WAS diabetes. Now I am starting to come out of the fog, so to speak. It’s great to hear your sentiments after 14 years.

    You are A LOT more than this #$%@! disease, of course!

    All the best,
    AmyT

  6. December 7, 2007 7:43 PM

    Allison,
    I’m glad we’ve all gotten to know each other – I just wish it was because of something other than our diabetes. I hate that you are feeling so overwhelmed by your job. I can’t imagine having to deal with a job that involves diabetes all the time. That’s why I enjoy reading so many blogs about diabetes – because I don’t have to deal with it all day long at my job, too. I feel for you right now. I hope things get better and as they say, “This too shall pass.”

  7. December 7, 2007 9:00 PM

    Allison,
    Realizations like that can really sneek up on you and take its toll. I had one creeping up on me as well. I think it’s just really dawned on me that is never going away. That there will be no day off, no vacation from testing, counting and injections. It makes me feel a little like hiding under my covers for a long time.

    The reason I don’t run and hide is in a great part because of you and your blog. Yes, I found it through the DOC, but YOU(not your disease) exhibit this amazing strength that I truly admire. I enjoy knowing that I’m not the only one crazed over flavored lip moisturizer. I love learning about new places like Trader Joes (how can we get one here anyway!) that I want to try. I love hearing your perspective on New York. My brother lived there for over 10 years, and a good bit of my heart is still there!

    OK, now I’m rambling, but my point is still the same. I do not see you as a label of sick, but on the contrary I see you as strong and LIVING.

  8. Allison permalink*
    December 7, 2007 9:43 PM

    Thanks everyone for all of your comments. Since I work in digital media and my boss knows about my blog (:: waves ::), he did read this today and we had a nice chat about it. It probably won’t fix everything like those stupid little comments that happen over and over and over again… but at least we can start diverting a bit of attention away from it.

    Though, Donna, I just wanted to mention that I don’t work in the diabetes industry. I work for a PR agency, so most of my clients have absolutely nothing to do with diabetes ever. However, because my tie to digital media is mostly through my blog, most people have identified me as “the girl who blogs about diabetes.” But diabetes really doesn’t have anything do with my job other than a couple random clients I work with.

  9. December 7, 2007 10:01 PM

    I’ve thought about this post, most of today… (I wanted to reply this morning but couldn’t come up with much.)
    You have always been – the young lady who moved from one coast to the other – and then learned how to navigate the NJ Turnpike. Even this evening, I spoke with my husband about your post (diabetic vs person w/ diabetes) and he knew immediately, “Oh yeah, the cute girl from the west coast.” I believe that the emphasis on diabetes in the news, the newspapers, etc… has made people more aware that it’s (diabetes) not what they think it is. And so, they ask questions. You will never know that you’ve helped someone to a diagnosis. You will never know that you’ve helped someone feel less alone. Yes, the questions can be intrusive. Yes, the office co-workers can assume too much. But – big but – your willingness to discuss diabetes, answer questions has probably helped more people than you will ever imagine.
    And so Allison, keep on doing the great job that you do through your blog and other avenues to teach others about diabetes – you may just save a life – and people are grateful that you are “out there.”

  10. December 7, 2007 10:16 PM

    I reallly can really sympathize with you on the diabetes expert thing. However, if it helps the syndrome is limited to diabetes. For years, I’ve been the dog expert — or the dog lady. I’ve trained almost every type of dog for almost every type of role, including police K-9.

    So here’s the deal, when I’m around people who don’t know me really well and aren’t dog people, they walk to me about dogs. That gets old too.

    The problem isn’t you, it’s them, they can’t think of something else to talk about, so turn the tables, and talk about their hobby.

  11. Gayle permalink
    December 11, 2007 9:44 AM

    Allison,

    Thanks so much for the great post.

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