Think Before You Speak: A Letter to Health Professionals

Dear Medical Health Professional,

When I was a child, my mother always said, "Think before you speak." Have you heard of this before? If not, please digest my words. If you have heard this, please reconsider them and then implement this policy into your practice.

You are in a position of extreme power. The title next to your name (MD, RD, RN, whatever) elevates you to a certain status in patients' minds. You are educated. You are powerful. You are specialized. You are respected. Your words can make or break someone.

My future brother-in-law is a doctor. My sister is a registered nurse. I know two medical professionals on a personal level. I get that you are a real person, and because you are not just your job, I want to speak to you personally and intimately. Please listen. Please absorb.

Today I went to a new podiatrist. I'll be honest. I get a little rise out of being the "good diabetic" and going to see my doctors. You see, I have many: endocrinologist, general practitioner, dentist, ophthalmologist, dietitian, diabetes nurse educator, gynecologist. Each time I enter one of their offices, diabetes is with me, and my visits are almost always focused on my disease. I am determined, adamant, and educated. I come across as a confident patient. And for the most part, I am.

However, when I enter an office like yours, I am reminded of what I don't have: a perfectly healthy, normal body. (Granted, one doesn't exist....but anyway....). I am usually in the waiting room surrounded by overweight, older men and women, some of whom are sporting walkers, wheel chairs, baggies full of medication bottles, and oxygen tanks. I walk into that waiting room on my own two feet, holding my medical insurance card, and toting my baby girl. You see, I'm one of the young ones, one of the healthy ones. But I'm there, doing my duty, being the good patient.

I fill out pages and pages of forms. I give strangers information about my medical history, my medications, my sexual health, my mental health, my numbers (address, phone, blood sugars, etc.). I hand over my co-pay, and I take a seat. I by no means have white coat syndrome; however, I do always have to fight the slightest twinge of butterflies in my stomach.

Today I was called back to a patient room where a nurse asked me why I was there. I told her I just wanted a general checkup. She left, and I read my daughter a book and fed her Cheerios while we waited for the doctor. The room was pleasant enough (large windows, music over the intercom system) as was the staff (doting on my baby girl). I felt ok about this visit. After all, I was there, the good patient, at attention and ready for lift off into an even better attitude toward my disease.

Then the doctor comes in. He spend a minute or two reading my chart. He then asks why I am visiting him today. I say I want a general foot check because I have type I diabetes. He asks how long I've had diabetes. I say just three years.

Doc: How is your diabetes?
Me: Pretty good.
Doc: What was your last a1c?
Me: 7.5, I'm usually in the 7 range.
Doc, looking over his reading glasses and frowning: Why?

Now pay attention: Do you think the first words out of a doctor's mouth, a doctor whom I just met two and a half minutes ago, should greet me with a frown and a, "Why?"

If you say yes: THINK before you speak. If you say no, and this is no surprise, I agree with you.

Unless you have type I yourself, there is no possible way you can understand how my life works. But, let me try to help you see.

Imagine having type I diabetes and in order for your doctors (and often family members, colleagues, friends, neighbors, and even acquaintances) to give you approval, to act like you are worth something, and that you are a decent human being, is if you do the following:

1. Sleep 7-8 hours a night. No more, no less. Too much or too little sleep is bad for blood sugars. This must be quality sleep, whatever that means, otherwise it doesn't count.
2. Be completely stress free. Because stress fluctuates blood sugars. Good luck with this one. And if you figure out, write a book. It will be a bestseller.
3. Eat a perfect diet---foods and portions---at all times. You do not get any sort of break or deal at major holidays (Thanksgiving, Christmas, Easter, 4th of July, etc.), events (parties, picnics, graduations), when you are on your period or had a bad day, when you don't have time to cook, when you are out of groceries, when you can't afford to buy the best foods, when you have a craving for Dairy Queen or Taco Bell, when you are at the town carnival, when it's your birthday.
4. Check your blood sugar 8-10 times per day. You do not get a deal or break if you are driving, shopping, mowing, sleeping, working. You must stop. Wash your hands. Change the needle. Insert the strip. Test. Then do the right thing. Either eat a snack, eat nothing, or take insulin. Then you must dispose of your needle properly.
5. Calculate what you eat perfectly, meaning know exactly how many carbs are in every ounce of food you eat. If you don't, your sugar will be too high or too low. Carry a carb counting book with you. If you are out with your friends for lunch at Olive Garden, you are screwed. How are you going to weigh the pasta the server brings you, calculate the carbs (and fat---because fat keeps sugars higher longer), and then know exactly how much insulin to take? Sorry. You failed.
6. Check your feet daily for any changes. If your feet are swollen, too hot, too cold, numb, tingling, irritated, blistered, red, blue, or more, contact your doc immediately. And by the way, you have failed.
7. Meditate or pray. Have your spiritual head on straight. If not, that could hurt your sugars.
8. You must carry these things with you at all times: extra pump supplies, a glucagon, glucotabs, extra batteries, extra test strips, extra needles, extra insulin. Do not lose any of them, do not store them somewhere where it's too hot or too cold.
9. You must have a sick day plan. This means emergency contacts, sources of food in the house like Jello and ginger ale and crackers, a glucagon, lots of water, and a phone handy (in case you almost die and need the doctor). If you are sick, you will be scared the entire time. You will miss work. You will test your blood sugars even more than 8-10 times a day, as mentioned in #4.
10. Change your insulin pump set every three days. If you forget, your sugars will be too high. If you leave it in too long, you could develop an infection. If you forget your pump supplies, you are screwed. You fail. Again. Oh, and try changing a pump set in a restaurant bathroom stall, or while you're riding in a car. Good times.
11. Worry enough, but not too much where worry because stress (see point #2). Worry that you miscalculated your carbs, that you took too much insulin, that you took too little insulin, that your meter isn't calibrated, that your pump tubing is clogged, that you worked out too long, that you worked out too short. Worry. Then make the right choices, all the time, based on that worry and the facts.
12. Exercise. Every day. For an hour, at least. Lift weights. Do cardio. But don't workout too much or too little. And be sure that you maintain the perfect weight. Do not be fat. Do not be too skinny. Be perfectly perfect.
13. See your medical team, the one that charges you out the wazoo for a 15 minute consult, constantly. Endo (4x a year), eye doc (1x a year), gyno (1x) a year, GP (as needed), foot doc (1x per year), dentist (2 x per year). Oh, and if you have problems, please increase the number of visits.
14. Make lots of money at a good job, never missing work because of your diabetes, so you can give it all to your medical care staff and insurance company and grocery store (healthy foods!) and pharmacy (medicines!) and church (spiritual health!) and to buy a good mattress (good sleep!) and a gym membership (exercise!).
15. Always have a good attitude, even if you go blind, have your feet cut off, lose a kidney or two, or have a heart attack.

If you can manage to do all these things, you will be approved. Well, until your next appointment.

Please listen to me as a person, not just person with diabetes. I am doing a damn good job managing my disease. I am proud of my 7.5 a1c. I do everything I can to do the "right things"---though I'm not perfect. And I bet you wouldn't be either if you carried this beast called Diabetes around with you all day.

Relate to me on a human level. What do people REALLY need to hear? Not a snide and judgemental, "Why?" No.

Try this:

1. Good for you for taking the time and effort and money to see me. Let's talk about your diabetes.
2. How are you doing with your diabetes? What areas do you struggle with? What are you good at?
3. I love working with patients who are trying to manage their disease and do so with education and enthusiasm. Let's talk about how I can be a part of that.
4. You are doing a great job! Yes, this a1c isn't perfect, but it's one of the best I've seen!

If you have made it this far, it means that somewhere and somehow I am getting through to you. That my words make sense. That you see me as Rachel, not as the girl with the 7.5. Please do not forget this lesson that my mother taught me. Please think before you speak.

Rachel