This past week I had my yearly exam with my obgyn. I will spare you all the details, but during our small talk, my doctor asked what I do and what I studied. I proceeded to tell her about my public health background and interest in health communication.

The conversation then turned to whether I wanted to go ahead with the standard STD screenings. She started to explain to me that she recommends everyone get screened, even if you are in a monogamous relationship, aren’t currently sexually active, and practice safe sex. She paused for a second and then said to me, “I guess you know all of this already. You are probably the one telling other people. Well at least then you can practice what you preach.”

She’s right. A lot of the health communication work I’ve done has been writing health content for adolescents and women ages 18-35. I’ve written about the importance of getting screened for STDs multiple times, in fact, I wrote about it this week for a website I’m currently helping to work on. I’m one person that my doctor does not need to convince.

She was also right about another thing. Even though there is a separation between my personal and professional life, I do want to practice what I preach. Not just with screenings, but with other health topics as well.

As a public health professional, I feel that I live a healthy life that is in line with current recommendations. I’m in no way saying that my behavior is perfect! I don’t regularly floss, I spend too much time in the sun (even with sunscreen), I don’t drink enough water, the list goes on. However when I write about general healthy habits, I don’t feel a tension between what I am recommending people do and what I currently do. I’m not implying that all people in the public health field (or any field really) should share this opinion, but it’s something that is important to me personally.

Enter my diabetes.

Being in the public health field, I’ve struggled with the fact that for most of my life with diabetes, my A1c has been higher than I want it. How can I advise other people on how to change their health behaviors when (until recently) I can’t get my own diabetes control where I want it?! I studied health behavior change, my job is to help people make positive changes in their lives and adopt healthy behaviors. Yet, I’m not able to practice what I preach, not with this. I worried about my credibility.

I’ve learned the theories. The Health Belief Model, the Theory of Planned Behavior/Reasoned Action, Social Cognitive Theory, The Transtheoretical Model, at some point I’ve applied them all to my own behavior. I know all about self-efficacy, motivation and confidence, outcome expectancies,  perceived severity, susceptibility, barriers and benefits, social norms, and cues to action. But despite all of this knowledge, my A1c was too high.

I’ve spent a lot of time thinking about this. Many nights tossing and turning were spent wondering if I truly am in the right field. Here’s the conclusion I’ve come to.

My A1c isn’t perfect, but it’s gotten better every appointment. I know the theories, but I also know that change is damn hard! Even with the best intentions, it takes time (years!), it takes effort (every single day!), and there will be setbacks. I know what it’s like to struggle towards a health goal. Maybe having an A1c that is a little higher than where I want it hurts my credibility, but honestly, I think it enhances it. When I’m at work writing, “Change is hard and takes time” I know first hand. I may not be at my ideal A1c but I’m getting closer, and that counts for something. I can bridge that gap between academia and real life, between what the health messages say and what happens when you try to incorporate that advice into a life managing a chronic condition. Most importantly, I can bring all this real life experience to my professional career.

My personal struggle does not mean that my professional advice is any less credible. To me at least, it means the opposite.

I seem to scar very easily. Cuts and scrapes that would heal pretty quickly on most people either take me 4 times as long to heal from, or end up leaving a scar. I honestly don’t know if this is diabetes related, if anyone reading happens to know, please let me know.

See this one here on my knee, I got this one when I went skydiving. Man, it was awesome, what a rush!  Nothing like falling through the air at 14,000 feet. Anyways, I didn’t quite nail the landing and I ended up with this scar right here.

I’m so lucky to have such an amazing sister. She is younger by only 2 and a half years and we have always been close. My sister is my best friend and has always been supportive and there for me. When I was diagnosed with diabetes at age 12, it clearly had an effect on everyone in my family, including my sister. She was 9 years old at the time.

Below is an excerpt from a letter written to her 4th grade teacher. It was written less than 1 month after I was diagnosed. Reading it for the first time, I just want to give her a huge hug, both the 9 year old her and the 22 year old. With this letter, I see my diagnosis through her young eyes, as well as the emotions that she was experiencing.

July 10, 2000

Dear Mrs. D,

Hi, how’s your summer going? Mine is fine except for one thing but I won’t get into that now.

… (I’ll skip the part about what my sister did that summer)

The thing that was a shock to my family is that my sister got diabetes. We found out when she went to her yearly check-up. She had to spend three days in the hospital getting taught her and my parents how to deal with diabetes. She needs to take 2 shots a day but she doesn’t mind them. She also has to watch what she eats, never skip meals, and take a snack before every meal. She doesn’t like that she can’t eat candy, cake, ice cream, cookies, marshmallows, or cotton candy, but they do make sugar free ice cream and candy. She can also have a little taste of anything else with sugar in it. But the part she hates the most is that she has to check her blood sugar 4 times a day and to do that she needs to poke herself. She had always hated it when she goes to the doctor and they do it there and now she has to do it 4 times everyday. I hate hearing her crying and screaming and saying that she can’t do it when it comes time to poke herself. Sometimes it takes her a long time and other times it doesn’t. I poked myself to know what it feels like and I didn’t mind it a bit. She gets a lot of bruises on her fingers by doing this and then she always can’t find a finger because they all have bruises on them. I am really mad and sad that this happened and it’s hard to describe my feelings about this on paper. So all I can say is I really hate that this happened and I think it’s totally unfair that Reva and other people who are diabetic have to go through this but it isn’t the worst thing to have happen. I really wish they would find a treatment that will make it go away or find a way to make it easier for people with diabetes like my sister.

This letter makes me want to laugh and cry. I smile when she talks about how she tried poking her finger and “didn’t mind it a bit” because that description fits her so perfectly. My sister, about to graduate college in less than a month, is hoping to enter the medical profession. Blood and needles and all that doesn’t seem to phase her, she is so intrigued by the workings of the human body. I on the other hand, get extremely squeamish. It made me sad to read how she hated hearing me cry and scream, I wish she never had to go through that with me. Her letter reminded me how truly difficult it was in the beginning, especially the first few months. I’ve talked about how it used to take me an hour to poke my finger, but as my sister’s letter describes, it was also accompanied by a lot of crying and screaming. I’ve probably tried to gloss over those memories over the years, but this letter brings them back. Finally, I love that my sister feels not only for me, but for all diabetics and hopes for a cure.

Any kind of illness, tragedy, or life-altering event has a ripple effect. It impacts those that are close to you besides just yourself. It’s so important to be there for one another and to recognize that even if it feels like it sometimes, you are not alone. It was easy for me to be selfish; it’s my disease, my life, my struggles, but this letter reminds me that my family had their own struggles from my diagnosis. My sister has always been by my side, through good and bad even when what was happening to me was affecting her as well. I am so thankful for her and even if I didn’t express it back then, I hope she realizes it now.

I love you so much Banana!

I had this great idea, I was going to use “social math” to describe the impact of diabetes. Social math is taking big numbers and statistics and putting them in a context that provides instant meaning, making the numbers more relatable and understandable for people. It helps people to see the importance of the numbers instead of just the numbers themselves. I thought this was perfect, I can show just how much supplies, money, and time is spent dealing with diabetes in a method that would make it more concrete. Well, turns out it’s not that easy.

Let’s start with how many. According to JDRF, each year, 15,000 adults and 15,000 children are diagnosed with type 1 diabetes in the United States. That’s approximately 80 people per day or about 1 person every 20 minutes.  So in the time it takes you to eat your breakfast, another person in the U.S. has been diagnosed with type 1 diabetes.

Type 1 diabetes accounts for a huge amount of money spent each year. Each year, T1D accounts for $14.9 billion in healthcare costs. That’s close to $2 million being spent every hour! But that $14.9 billion only makes up a fraction of the $174 billion that accounts for both type 1 and type 2 diabetes, according to the CDC. And that’s just for direct medical costs.

There’s a lot of supplies that come with being diabetic.

In one year, my skin has been punctured by at least 1,618 needles.

What about test strips? If every type 1 diabetic in the United States saved the test strips they used in one year and lined them up end to end, they would circle around the world, twice!
This is using an average of 4 tests per day, per person, and 2 million people with type 1 diabetes.

Here’s where the numbers aren’t quite as compelling.

Type 1 diabetics need insulin to live. However, we’re still talking about relatively small amounts. I go through about 2 vials of insulin a month, that’s 20 ml. In the almost 13 years that I’ve had diabetes, I’ve used about 3 liters of insulin, that’s less than 1 gallon. When I think about it, a gallon of insulin is a lot, but that’s because I’m very familiar with my insulin doses. To someone who has no idea, a gallon of insulin in 13 years may not seem very significant.

What about time spent on diabetes related activities? You know how someone has figured out how many days we spend in the bathroom or on the phone or watching tv? What about diabetes? When you add up all the minutes, how many days of our lives are spent strictly taking care of our diabetes? Here’s the thing, the answer is every day! It doesn’t work like that. Even if I say, oh yea I probably spend 30 minutes between bolusing, carb counting, testing and treating lows every day, I’m still thinking about my diabetes every other minute of the day. It is always on my mind.

Basically I decided that the numbers don’t come close to conveying the impact of type 1 diabetes. There might be 2 million of us in the United States, but we are only 5% of all diabetics. It has a high cost, but only a fraction of the amount spent on diabetes in total. But these numbers don’t convey the day to day experience of living with diabetes. It doesn’t convey the continuous level of vigilance and worry, the constant mental math, the feelings associated with low and high blood sugars, the level of necessary preparedness, or the frustrations we all feel.

I deal with 1618 needles a year, but that doesn’t tell you about how when I was first diagnosed, it took me close to an hour before I could psychologically send one of those needles into my finger. $20 spent on treating lows a month doesn’t tell you how disruptive and debilitating some of those lows can feel. And that 1 person that was diagnosed in the past 20 minutes, it doesn’t tell you the emotions he or she is feeling while being told that their life is about to completely change.

Social math is a great tool for some statistics, but when it comes to diabetes, there’s so much that it can’t tell you.

I had a different post for today, but I couldn’t go through with posting it. In light of current events, it just seemed so trivial. This past week I was informed about the tragic and untimely death of two people that I went to high school with. I can’t even fathom the grief and shock that their family and friends must be going through. That kind of pain and loss is unimaginable and my thoughts and prayers are with them during this difficult time. After hearing this devastating news, it seemed that everything else I heard was just more sad and horrible news. A brain tumor scare, a cancer diagnosis, the slow decline of a family member’s friend, relationship drama, car accidents, the list goes on. Perhaps I was just more acutely aware of these events because of the news of the first, perhaps every week has this much bad news, but it seemed so overwhelmingly negative. It’s all so hard for me to process, I don’t even think I can put into words how I’m feeling, only that I am so sorry that there is so much suffering in this world and I wish it didn’t have to be this way.

The one thing this week truly gave me though, is perspective. Yes, I may have a chronic disease, but it’s manageable and it’s not a death sentence. I’m still in good health, I have friends and family that love me, and I have so much to be grateful for. The events of this week made my own daily struggles and frustrations seem so small, and rightly so. It’s important to have that kind of perspective. It reminds you to not take anything for granted, to truly live each day to the fullest, to live in the moment, and to cherish the people in your life. It didn’t feel right to spend today’s post talking about low blood sugar or other inconveniences. Today is about taking a step back from your own life, stepping outside of your own daily hassles, frustrations, and problems and acknowledging the bigger picture. It’s about realizing that although your worries may seem great, there is someone else with far greater worries. It’s about recognizing the struggles and suffering of those around you and being there for them, even just in thought.

It’s so easy to get caught up in your own little bubble, but I’m learning that it can be beneficial to take some time to step back and to put your life and the problems you may be facing in perspective. Perhaps for a moment, they won’t seem quite so bad.

“I was angry, for I had no shoes. Then I met a man who had no feet.” ~ Chinese Proverb