I see a fat girl in the mirror.
Her hair has been long and short, white platinum blonde to dark brown. Her warpaint (or makeup, if you want to call it that) changed over the years, but she is still fat. Sweatshirts and loose clothing in somber tones to prevent attention being drawn to the body she hates has been her uniform.
Even when I am told by others that I am beginning to look too thin, she is still taunting me from her reflective hell.
She won’t go away.
This is what having an eating disorder means to me.
Whatever you choose to call my particular disorder (diabulimia, skipping shots, or “Eating Disorder Not Otherwise Specified“), it’s something that will never leave me. When friends and family and acquaintances say: “You look great! Wow!”, my first thought is:
“Are you lying to me?”
It doesn’t matter that my second thought is about how good I might feel today or that I know that I do look great. The self-consciousness that came with being overweight as a teenager is forever frozen in my head. You are lying to me. I may be a healthy weight, but I still think you are telling me that I could look…better.
Am I lying to myself?
Diabulimia was my way of exerting some control over the chaos in my life. I may not have been able to choose my diabetes, but I was mightily sure that I could choose if I was going to take insulin.
Take that, diabetes. You don’t control me.
And I got thin. At such a price. I am still ashamed.
Yes, I no longer omit insulin. That’s not an option for me. I understand the toll withholding the life-giving drug does to my body. I have thrown out the baggy clothes. I force myself to wear clothes that show I am thinner. I am still uncomfortable in them, as if they are the Emperor’s new clothes and someone will see the fat girl parading around instead of me.
I have kept the weight off for the last two decades, always taking insulin. Eating (for the most part) what I want, when I want. Not denying myself a taste or two if it was worth it.
But there are days where the fat girl in the mirror mocks me. It’s those days that my blood sugars stay within range, but I’m living on coffee in the morning and snacking lightly through the day. I’m not denying myself nourishment; I believe that I’m not hungry. If I’m under stress, I forget to eat, but if I go low, I’ll grab a juice to bring me up. (A juice with added vitamins, so it’s not wasted calories. I detest wasted calories.)
The scale was not a tool that I allowed in my house for years, and once we got one, I try not to step on it too often (unlike in the past, where I would weigh myself every few hours…).
Like an addict, I know that I have to take one day at a time. Unlike those with an alcohol or drug addiction, I cannot avoid places where the addiction can rear its ugly head. My addiction is everywhere and with it comes insulin.
I am the fat girl in the mirror.
I will always be the fat girl in the mirror. She will be there. Always. Most mornings, she is talked back into the fog and I remind myself of the promise I made: Do everything to stay healthy so that diabetes doesn’t rob me of my life. Every day I make a choice. It’s the hard choice, not the easy choice. Don’t think it’s easy.
Wouldn’t you love a tidy end to this post? Something witty? Banal? Me telling you that I have conquered this eating disorder and think I’m a success.
My diabulimia, while dormant, will never end. I will never say I’m cured. Food will forever be something that I love and hate.
All I can do is help others understand that there is an alternative to skipping shots, even if I will forever see a fat girl in the mirror. I’ve gotten used to seeing her. She’s my reminder.
I’d rather see a fat girl than no one at all.
This week is National Eating Disorder Awareness Week. I’m sharing this post with you to show that many of us still struggle with body image issues, years after we are supposedly “cured”. There is help and treatment, but the best thing that friends and family can do is to learn more about the devastating mental and physical consequences of an eating disorder. The disease may begin with a preoccupation with food and weight, but it grows to be so much more. There are many organizations that can help, including some specifically for diabulimia: The Diabulimia Helpline and We Are Diabetes.
To learn more about my experience, read this.
At some point each day, I’ve said these words to myself. This has become my diabetes daily mantra.
1. I am not a number.
Diabetes is a numbers game. The house always wins because the cards are stacked. We are often judged, (often wrongly, by the way), on how well we are managing our diabetes by numbers. “Your blood sugar is 256? What did you eat?” “Why are are 46 right now?” “Your A1C is higher than it should be.”
I am more than a single number. More than a series of numbers. External influences can chip away at the concept of perfection and leave me frustrated. Stress? Illness? Delayed gastric emptying? Too much exercise? Not enough food? Too much food? Gah. That’s called living, everyone.
The numbers that I see on my blood glucose meter are not me; they’re signposts to help me get to where I need to go. The numbers are just points on a graph. Those numbers are a destination, a starting point, and not me.
(Ever see The Prisoner? It was a British show in the 60s that was weird and wonderful at the same time. Every time I say this to myself, I channel this quote from the main character. He says: “I am not a number. I am a free man.” )
2. It’s a new day.
The day may start at 2am with a hypoglycemic reaction and a blaring Dexcom or a high blood sugar and two glasses of water, but I have the opportunity to mold the day into something new. Yes, yesterday may have been fraught with a roller coaster graph on my Dexcom G4 (or problems with seeing that graph) and today may be the same (or completely different!), but I’m going to make the decision to McGuyver it into something that I can live with.
3. I’m not the only one.
There are millions of people who do the daily dance with diabetes (tango? lambada? electric slide?) and there is comfort knowing that I’m not alone. Need questions answered? Medical team. Need an “I get it”? DOC. Need a hug? Family and friends. Or hell, I can wrap my arms around myself if no one’s in the vicinity.
I also need to remind myself that my family is also dancing with me. (Sometimes The Kid provides a little levity when she dances.) My diabetes impacts those around me, so I’m not the only one who has this burden. I have to show my love and appreciation for them and what they live with, too.
4. I can’t undo the past.
After 30 years, I’ve made my mistakes - and not just with diabetes. I can wail and rage all I want about the high A1Cs in my teens and diabulimia and what it may have done to my health, but those years are etched in stone (and my body). All I can do is focus on what I can do today to mitigate the damage by living well from this point forward. It’s OK to remember those times as cautionary tales, but the present is where I need to be so that I can have a future.
5. Take a moment and breathe.
I live at breakneck speed in my head, even though I may be sitting on the couch. If I don’t slow down and take a moment to breathe, I will not be able to think about what I need to do with clarity. Mindfulness is a powerful tool that may take years to master, but only a few minutes to start. Focusing on breathing in and breathing out helps to calm me down and center me, so that I can head off in breakneck speed again - but with a seatbelt and airbags.
What is your diabetes mantra?
For want of a nail the shoe was lost.
For want of a shoe the horse was lost.
For want of a horse the rider was lost.
For want of a rider the message was lost.
For want of a message the battle was lost.
For want of a battle the kingdom was lost.
And all for the want of a horseshoe nail.
- Old Proverb
It wasn’t a conscious effort or a determined decision to skip a dinner shot the first time. I just got caught up in whatever insignificant thing that I was doing that evening (A teenager’s life is so important, so it was probably something like talking on the phone in my room while eating and painting my nails fire engine red.) and then I just went to bed. The next morning, I woke up and realized that I had missed my evening insulin mix (both long- and short-acting), but that I wasn’t…well, to be honest…dead. I took my morning dose, choose another black outfit from the closet (“Christel,” my father sighed with exasperation, “Are you going to a funeral?”) and waited for my friend to pick me up.
I knew what DKA was. I knew what ketones do to a body. I knew what a lack of insulin will do to your mind. My control was crappy already and life wasn’t entirely sane in my family, so I had a lot of independence when it came to my diabetes. My parents asked what my blood sugar was, and I would pull a random number out of my head (or another part of my body) to blurt out. They weren’t stupid. (The lack of prescription refills on my test strips were a dead giveaway.) And I took insulin. Just not every time I ate.
I was fat. Why was I fat? I can name several reasons, but it started with a 3,500 calorie Diabetic Exchange Diet to put the weight on after my diagnosis. (68 pounds looked scary in photos. I actually threw out pictures taken at Joslin when I first arrived there, because I looked so sick.) I kept eating well after I packed pounds back on my little frame and a year and a half later, I started high school at 104 pounds. I graduated high school at 135 pounds, and at 4’11” inches, that put me in the “She’s got a nice personality and a pretty face, but…” dating category.
Eating was a way of socializing with my family and friends, and I was always of the mind: “I can eat anything I want and let me prove it to you.” I would skip a shot when I felt like it or was too tired to deal with it or out with friends and didn’t want to stop having fun. This attitude didn’t go away at university, but I added drinking alcohol into the mix. (Legal, people. I went to university in Canada, where it was legal for me.) I was scared of being low when I was drunk, so I wouldn’t take a full dose before we went out to bar hop, but we’d carb load before hand. And sometimes at 4am when we’d come back to the dorms. I knew where every bar’s bathroom was in Montréal.
I met someone who loved the whole package and it was with him that I had a summer of great blood sugars and healthy eating and biking the Lachine Canal every night. My size 14 clothes hung on me and when September rolled around, I was a size 4. And then the relationship ended and I drank coffee and cried a lot. Old habits rose up like zombies and skipping shots and eating what I wanted became de rigueur. 95 pounds. 94. 93. I just didn’t care. Nothing “bad” was happening to me and people told me how great I looked. Guys who wouldn’t give me the time of day before were now giving me their number.
I thought I could have lived like that for a long time. (Silly me.) Spilling ketones, downing liters of soda daily, taking insulin once a day with an arbitrary amount chosen (“Hmm… I’m feeling about 340 today… 10 of this and 12 of that and off we go…). I may have lived, but I was barely surviving.
My endo saved me. She wasn’t one to pull punches and knowing me for most of my diabetic life, knew that I could talk my way out of a lot of things, but I was cornered by a series of questions that ended with: “How long have you been skipping shots?” The jig was up. I was officially diagnosed with diabulimia.
Outpatient intensive individual and group therapy or inpatient treatment were my options. I chose the former. I didn’t see myself as someone with an eating disorder. I saw myself as someone who was fat and never wanted to be fat again. I saw myself as someone who didn’t want to be diabetic and was still hoped that it would just go away. I still saw the fat girl in the mirror. Body issues? I haz them.
There are a lot of us out there, struggling. I know that I’m not alone, but it was years before I met someone else in person (Lee Ann Thill) who also dealt with diabulmia. I wrote about it in a column on dLife.com , was on dLife TV for an article on diabulimia and was even interviewed for a CNN piece. (They focused on a woman who developed irreversible complications and was still skipping shots rather than me, who was now healthy and not skipping shots. I wasn’t sensational enough.)
Therapy changed me for the better. It took a long time and even after twenty years, I still struggle with how I look to myself. But I haven’t skipped a shot since therapy ended.
And all for the want of a small dress size…
I could have lost so much more.
I’m not talking about my weight.
So, yeah, this article has my knickers in a twist.
don’t like hate with a passion when “reporters” (In this case, I’m stretching the definition.) don’t bother to take the proper time to do research when it comes to Type 1 diabetes. We already deal with the Diabetes Police, but to see it in print sometimes always sends me into orbit. And this struck close to home.
Like my friends, Kelly Kunik and Melissa Lee, who I see as generals (rocking übercool outfits) in the Diabetic Knickers In A Twist Club rallying the troops when there are inaccuracies in reporting, I realize it’s up to diabetics to point out when the media gets it wrong.
So I did.
The UK Editor-in-Chief of Vice.com will have this snuggled into his inbox for Monday.
I recognize that your position at Vice.com most likely does not place you in a micromanagement position, overseeing every tiny thing on your site, but it would be remiss for me to let this article go without mention.
Rachel Hardwick’s article on diabulimia is, quite frankly, rife with inaccuracy that could have been quickly corrected through simple fact-checking. Relying on a single interview with one person who, as she states, is a “recovering diabulimic/bulimic” and not a medical professional or gosh, even Google, is simply poor journalism.
The statistics she has chosen are pulled from articles almost ten years old or, frankly, from thin air. 80% in Australia? I’d love to see a medical journal showing that percentage. (And the use of a possessive “s” rather than a plural? Anyone who writes, even as a full-time intern, should know better.)
Apparently, in the UK, a third of diabetic women between the ages of 15 and 30 are skipping their insulin injections in order to lose weight. In America, the figure’s been estimated at 40 percent, and in Australia at an almost unbelievable 80 percent.
The facts that the subject states are also incorrect.
What else can happen if you skip your insulin?
It can make you infertile, you can end up with peripheral neuropathy (damage to the nerves, usually in your hands and your feet), autonomic neuropathy, which means low blood pressure, as well as heart problems and kidney disease.
Autonomic neuropathy is not low blood pressure. It’s damage to the nerves governing the entire autonomic system, impacting heart rate, blood vessels, the digestive system, and even sweat glands.
So the same as undiagnosed type 1 diabetes then – basically really awful. Why haven’t I heard about this condition before?At the moment diabulimia isn’t officially recognised as a mental disorder, but DWED are hopefully getting it in the DSM (Diagnostic and Statistics Manual), which comes out in May. At the moment, they’ll wrongly diagnose you with anorexia, then in hospital they’ll feed you all this high-sugar food, which isn’t good if you’re diabetic!
It’s not the same as undiagnosed Type 1 diabetes. Those individuals, while initially producing small amounts of insulin in their body as the islet cells are killed off, often end up in diabetic ketoacidosis, hospitalized, and hopefully, are treated quickly. If not treated, well, they die. Diabulimics choose to omit insulin on a regular basis, but do not stop taking insulin altogether. They take just enough to keep them out of hospital, but live with very high blood sugars.
The subject states that “in hospital they’ll feed you all this high-sugar food…”. In the almost thirty years that I have been Type 1 diabetic, I have never received a tray of “high-sugar food”, because I was identified upon intake as a diabetic.
(As to why hasn’t Rachel heard about this before? I have no idea. If you Google “diabulimia”, you’ll get thousands of hits and it’s been covered in the media before. I spoke to CNN and dLife TV about it in 2007. Countless medical abstracts and personal blogs highlight it. However, if you’re not a Type 1 diabetic, you probably wouldn’t know of it.)
There is no mention of the psychological treatments of diabulimia that often help women (and men). It’s a psychological issue that manifests physically. The sensationalized article is shoddily written, poorly researched, and unfortunately, if it was meant to draw attention to the single subject’s non-profit, it failed.
Why do I care?
Out of the global diabetic population, only a small segment of us are Type 1, yet we are often lumped in with the Type 2 group. Reporters, even those from major news networks, get it wrong and give misinformation. Without those who know the right statistics and information speaking up, we become gross caricatures of who we really are.
And most of us don’t go blind or have a stroke or lose a kidney or die. Most of us get help with diabulimia, learn from our mistakes, and move on. I should know. I’m living proof.
There. I feel better. I can untwist my knickers. For now.
Have a great weekend!