Diabetes & Eating Disorders

Asha Brown

Asha Brown

 

Note from Quinn: This week I’m honored to have a guest blogger contribute to the important conversation of eating disorders and diabetes. Read her story below…

Imagine the following: In order to live a long and healthy life, you must become somewhat of a pharmaceutical mathematician; a walking, talking, carb and calorie counting, nutrition facts memorizing pincushion.  You have a chronic illness called Type 1 Diabetes.  Numbers and food are precisely calculated every single day for every single meal.  In order to live with type 1 diabetes, you must walk the fine line of control and obsession.  Recent studies suggest that potentially one in three women living with type 1 diabetes may be struggling with an eating disorder.

I was diagnosed with Type 1 Diabetes when I was 5 years old. I grew up with this all-encompassing chronic illness and I barely remember my life before the click of the lancet, the beeps from the glucometer, and the hypoglycemic episodes that still, after 23 years of living with this disease, scare me.

My eating disorder didn’t start overnight. Besides the daily rollercoaster ride of living with a chronic illness my childhood was wonderful. But something changed drastically after 6th grade. Middle school was a challenge and high school was even harder. No one else had to worry as much as I had to worry. No one else had to eat a snack in the middle of class, and no one else had to stop in the middle of something because they were “low”.

My inability to cope with living with type 1 diabetes, and with all the challenges and complications living with that chronic illness creates while trying to just be a teenager, ignited a deep resentment and sense of anxiety inside of me.  I felt that I was trapped inside a failed body that would not allow me to ever feel truly free.  What started out as an attempt to avoid having low blood sugars (mostly while performing on stage) and an honest desire to just not have to “worry” about my diabetes for a few hours became a dangerous eating disorder that nearly cost me everything; my career as an actress, my marriage and my life.

I lived in a self-made hell for almost ten years of my life.

Four years ago I took my first step toward living my life fully again when I accepted treatment at The Park Nicollet Melrose Institute in Mpls, MN; one of the very few Eating Disorder Treatment Centers that offers a program specifically tailored to type 1 diabetics with eating disorders.  It was the scariest (and yet probably bravest) thing I have ever done.

Living with my diabetes today is very different after finally coming to terms with my eating disorder.  There are still challenges in navigating my diabetes management through my daily life, and there always will be.  The difference is that that now when an unexpected challenge arises, I am not afraid to do whatever is necessary in order to take care of my type 1 diabetes and protect my strong recovery.

Helping other type 1 diabetics who struggle with an eating disorder has helped me stay strong in my personal recovery. In 2012 I founded the organization We Are Diabetes to help diabetics find the unique support and resources that they need in order to live a happy, healthy life. Recovery is possible no matter how long you have been struggling and no matter how “lost” you may feel. There is always hope!

If you or someone you know is struggling with living with Type 1 Diabetes while also battling an eating disorder or is even just exhibiting some of the signs and symptoms of diabulimia please visit the We Are Diabetes website for more information.

wad_logo_square

Eating Disorders & Diabetes

February is National Eating Disorder Awareness Month so I thought it was a good time to shine the light on the high prevalence of NEDApeople with type-1 diabetes and an eating disorder. This will be my first post in a series of 4 on this specific topic (I will have a guest blogger one week to share her personal experience). 

In this blog I will give you a broad overview of this specific dual diagnosis…

An article by…By Ovidio Bermudez, M.D., and Jennifer Sommer, M.S., R.D.

What is ED-DMT1?  

The dual diagnosis of an eating disorder and type 1 diabetes is often referred to as “diabulimia,” however this is not a medically recognized term and it is not an accurate description. This syndrome is termed among healthcare professionals as “ED-DMT1,” which represents this dual diagnosis in an individual with type 1 diabetes. Note: “DMT1” refers to diabetes mellitus type 1. For clarity, “type 1 diabetes” will be spelled out in this article in place of the abbreviation “T1D.”

ED-DMT1 describes the intentional misuse of insulin for weight control. This could be caused by decreasing the prescribed dose of insulin, omitting insulin entirely, delaying the appropriate dose, or manipulating the insulin itself to render it inactive. Any of these actions can result in hyperglycemia (high blood glucose levels) and glucose excretion in the urine, which causes weight loss. So, in a sense, calories are “purged” this way, which is where the term diabulimia stems from. However, a person suffering from ED-DMT1 may not be diagnosed with bulimia or have any symptoms of bulimia such as binge eating and self-induced vomiting. On the other hand, some individuals may only withhold insulin after they have binged (whether it be a true binge or just a larger-than-typical amount of food) as a method of purging. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors—or they may only manipulate their insulin and otherwise have normal eating patterns.

How many people in the United States have ED-DMT1, and who is at highest risk? 

It is unclear exactly how many people in the United States have ED-DMT1. What is a striking statistic is the percentage of people who have type 1 diabetes who also have an eating disorder or disordered eating. “Eating disorder” refers to abnormal eating habits that may involve either insufficient or excessive food intake to the detriment of a person’s health, such as anorexia nervosa or bulimia nervosa. “Disordered eating” refers to a wide range of irregular eating behaviors that do not warrant a diagnosis of a specific eating disorder.

Also alarming is the rate at which treatment centers are seeing more and more cases of people with ED-DMT1 who have become ill to the point of requiring intervention at the inpatient, residential, or partial hospitalization levels of care.

The statistics vary slightly from study to study and depending on the criteria used, but in each case the numbers are quite high. A study by Patricia Colton, M.D., a psychiatrist at the Eating Disorders Program at Toronto General Hospital, found that 7-35% of girls and women with type 1 diabetes met the criteria for what is termed a “sub-threshold” eating disorder, meaning they display symptoms of an eating disorder but may not meet the full criteria. In that study 0-11% met the criteria for a full-syndrome eating disorder. These are pretty dramatic numbers when you compare them to the non-diabetic population. Rates in the general female population vary from 1-2% for bulimia nervosa and 0.5-1% for anorexia nervosa. It’s been reported that girls with type 1 diabetes are twice as likely to be diagnosed with an eating disorder compared to their non-diabetic peers.

So we see that people with type 1 diabetes are at a much higher risk of developing an eating disorder than the non-diabetic population. Women appear to be at higher risk than men, and the pre-teen and teen years are a particularly vulnerable time.

Another unfortunate but important concern for this group of patients is the increased mortality risk that they experience. In one study, the risk of death for the dual diagnosis of ED-DMT1 was 17-fold compared to type 1 diabetes alone and seven-fold compared to anorexia nervosa alone. This is alarming and a reflection of the real risk brought about the co-existence of these two diagnoses. Serious and premature complications of type 1 diabetes and a significantly increased risk of premature death make the dual diagnosis of ED-DMT1 a very serious condition. In summary, complications for those with ED-DMT1 can be divided into acute and chronic complications of insulin deficiency and hyperglycemia. The acute complications include polyuria, polydipsia, weight loss, and DKA. The chronic complications are related to diabetic microvascular disease often affecting the eyes, the kidneys, and the heart, and peripheral neuropathy.

——————-

t1

I find it fascinating that an eating disorder is rooted in much deeper issues then just external appearance. There’s a misconception out there that the only form of insulin manipulation is decreasing or not taking it at all. I found on the web an article that stated, “There are people who actually overdose their insulin in order to run blood sugars low, or to exert extremely tight control. The eating disorder can look different from individual to individual. It is important to note that as in the case with other eating disorders, the dual diagnosis of ED-DMT1 affects people of all ages, both genders, all socio-economic statuses, races, and ethnicities.”

If I kiss you will I get diabetes?

In honor of it being Valentine’s week, I decided to share with you all an excerpt from my upcoming book release of, “If I kiss you will I get diabetes?” I hope you enjoy… Quinn's Diabetes book cover

——————————————————————————————————————

My friends and I looked forward to the YMCA dances that would take place twice a month. We would try on outfit after outfit for each other until we would find the perfect one. I would beg my mother to buy me something that was name brand, Tommy Hilfiger, Abercrombie & Fitch, or Calvin Klein. Labels on my clothes meant acceptance to me as a teenager. We would wait patiently in our girl’s group for the 2-hour dance to be asked by a guy if we would like to dance. I wanted to look, act, and talk like my friends; but now that I had a chronic illness that started with the word “DIE”…would I stick out like the black sheep of the group? I was afraid that I would be rejected because of that.

I remember the first time that I was asked to dance after getting diagnosed with diabetes. It was by a boy named Kyle who was tall, had dark wavy hair and just so happened to be a bit of a bad boy. I remember thinking to myself he must not care if I have diabetes. Or maybe no one had told him? I was so caught up in what he would think if he knew about my chronic illness, I wasn’t able to just enjoy a fun night with friends. Though I was thirteen at the time I was so afraid to tell any guy that I had diabetes. I was afraid that I would be rejected because of that. Years later at 25 I still struggled with it. Though I had become physically accustomed to having diabetes and going through the motions of checking my blood sugar, counting the carbohydrates at my meal, and then dosing out my insulin, and then giving myself a shot, I seemed to not have been able to accept the terms of it mentally. I had learned to adjust my life to diabetes and was even known as a diabetes advocate, but I still felt like that thirteen-year old girl on the dance floor petrified to let 12-year old Kyle know that I had diabetes.

A good friend of mine, Emily, who also has type-1 diabetes, told me it was so weird that I was hesitant to tell these guys about it when they probably already knew. She talked about having been diagnosed at seven years old and that diabetes was always a part of her. “I’m a package deal and the guy that I’m dating can take that or leave it.” She said it so matter of factly I wondered why I didn’t share her same sentiments. Maybe it was because I was diagnosed in my teen years that I remember what it was like to be Quinn with no chronic illness. For me I couldn’t figure out how to blend those two lives and struggled with it into my 20’s.

I’ve come now to a point in my life where I realize that the day I was diagnosed was the worst day of my life, but it was also the best. It was the worst because of the fear of the unknown and the exhausting thoughts of how I was going to do this all. But it was the best day of my life because diabetes has made me into the person I am today. I’m much more compassionate, I reach out to others in need quicker, I became independent and responsible for my own life, and most importantly I realized what my purpose and passion for life was early on. It took me 13 years of having diabetes to realize that having diabetes was a part of me, a package deal, as Emily would say. If a guy was interested in me, he must have to accept the terms of my illness.

My new motto to live by comes from the brilliant Brene Brown

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy–the experience that makes us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our life.”

Correction: Flu & Diabetes

I wanted to make a correction to my recent blog post that I put up this past Monday. It was brought to my attention by a loyal reader, who is a Family Practice Docter, that some of the information I gave about the flu shot and my diagnosis were misleading. He educated me and so I wanted to share with you all the correct information…

-People misuse the word or diagnosis of “Flu”
-What you actually had was a “Gastroenteritis” (vomiting, diarrhea, GI upset), or often called “Stomach Flu” in the lay press. It is NOT “Flu” or Influenza! 
-Referring to the annual Flu shot in the same context as Gastroenteritis is misleading, and incorrect
-The Flu Shot, or more accurately, the Influenza Vaccination, is to provide protection for the severe Respiratory Infection we in the medical community call Influenza or “Flu”. It has nothing to do with the GI illness of vomiting and diarrhea that the lay press often call “Flu” or stomach flu, and it will not provide any protection for this GI illness. 
-This year, the most likely cause of the severe gastroenteritis we have been seeing is probably the Norovirus (previously called the Norwalk Virus).

Diabetes & the Flu

diabetesickday

Having a pharmacist as a father I’m constantly reminded every fall that I MUST get a flu shot. I’m always compliant, knowing the last thing that I want for the impending winter season is the flu combined with type-1 diabetes. In my mind, a terrible combination.

This past week I had planned to go on a business trip, but drive so that I could also stop to see close friends along the route. It was an ambitious trip. 7 days. 5 states. 8 close friends. Oh yeah, and some business to conduct. 🙂

The trip came to a halting STOP on day 3. I was staying in Grand Rapids, MI with a college friend when I got very sick overnight. I knew it was the flu. That morning I diligently checked my blood sugars, but I couldn’t keep any food or liquid down. I ended up making the decision to go to the emergency room that afternoon to be checked out. I in fact had the flu. The point is just because you get the flu shot doesn’t make you immune to all the different strands out there. Unfortunately for me I was not home and stayed the next 3 days in a hotel trying to recover. I went back to the basics of knowing what to get when you have the flu and diabetes. Check blood sugar often.sprite Sip on Powerade & regular Sprite. Get lots of sleep. Saltine crackers are your best friend.

Here is some great information that I found through the American Diabetes Association’s website on what to do on sick days (I printed this out and stuck it in my drawer so that I have it as a reference the next time I get sick)…

Having the cold or flu is definitely no fun. If you have diabetes, it can also make your blood glucose levels go crazy.

Always talk to your D-team about what you should do when you get sick.

Here are some tips on what you can do to help keep your blood glucose in check. Again, be sure to call your D-team when you are sick for specific guidance.

  • Keep taking your insulin. You may think it would make sense to cut back since you’re not eating as much, but when you’re sick, sometimes you need more insulin. Stay in contact with your D-team when you’re sick.
  • Eat regularly. You may not have much of an appetite, but it’s important to try to get some carbs at meal times. If you’re having trouble keeping food down, try sports drinks, juice, soup broth, or even a frozen fruit bar.
  • Drink a lot of water. When you’re sick you’re always in danger of becoming dehydrated. Stick to non-caffeinated drinks. If you have trouble keeping fluids down because you are throwing up, drink small amounts – sips, or just a teaspoon or so – at a time, about every 5 minutes. This will help keep you from getting dehydrated.
  • Talk to your D-team about what kinds of medicines they recommend.
  • Check your blood glucose often, every 2-4 hours. Since blood glucose can go crazy when you’re sick, it’s good to keep a close eye on it.
  • Check your ketones often. The biggest danger when you’re sick is DKA (Diabetic Ketoacidosis). If ketones get too high and you don’t treat it, you could get even sicker! If you are vomiting or have diarrhea, check even more often. 
     

Sick Day Snacks
You may not feel like eating what you normally eat when you’re sick so here are some snack ideas. These snacks have about 10-15 grams of carbs in them.

Fluid Snacks

  • 1 double-stick Popsicle®
  • 1 cup Gatorade® or sports drink
  • 1 cup milk
  • 1 cup soup
  • 4 ounces apple or orange juice
  • 1/2 cup regular soft drink (not diet) 

Food Snacks

  • 6 saltines
  • 5 vanilla wafers
  • 4 Lifesavers®
  • 3 graham crackers
  • 1 slice dry toast (not light bread)
  • 1/2 cup applesauce
  • 1/2 cup cooked cereal
  • 1/2 cup ice cream or frozen yogurt
  • 1/2 cup regular ice cream
  • 1/2 cup sugar-free pudding
  • 1/2 cup regular (not sugar-free) Jell-O®
  • 1/2 cup custard
  • 1/2 cup mashed potatoes
  • 1/4 cup sherbet or sorbet
  • 1/4 cup regular pudding

 

Screen shot 2012-11-02 at 4.47.03 PMHere’s to better days to come…

What are your sick day strategies?