In approximately one hour, my parents and I will be on the road.
Are we going away to some exotic location for some good old-fashioned RNR?
Are we taking some time to make beautiful memories with relatives?
Are we spending the day at a museum, adsorbing knowledge in stimulating exhibits?
Not even close.
So what are we doing? Well, we are taking a 2 hour car trip down to the children’s hospital – a place that is becoming all to familiar to me.
As you guys know, I have been having health problems and despite all these doctor appointments, no one can seem to figure out why my body is pulling these cruel tricks on me. With each passing day, I feel like I am fighting my body more and more. Though I beg of it to allow me to run around, play, and enjoy these short months of freedom from the cold halls of my high school, my body refuses to listen. On top of the bone pain and nausea I have been experiencing, I am now becoming short of breath and have been sleeping most of the day. Even though I feel so physically ill, I am beginning to doubt myself more and more. There is not a moment that goes by when I wonder if I am going crazy and all the symptoms I have been experiencing are the result of some psychological ailment – like a conversion disorder – instead of a true physical one. Many of my blood tests are extremely abnormal so I guess that should reassure me that I am not “loonie bin” worthy. but every time I walk out of the hospital without a diagnosis I have to wonder if it is my mind, not my body, that is destroying my health.
Last time I went to the hospital, I was given prednisone. The rheumatologist who prescribed it hoped that it would decrease my sky high muscle enzymes and bone pain as well as increase my red blood cell and white blood cell count. After 10 days on the medication and dealing with its myriad of side effects, my blood was drawn and fortunately my counts looked much better. I also was starting to feel a lot better as well. The pain had subsided and I was feeling more like the Claire I once was. Unfortunately, these benefits were short lived. Slowly but surely the symptoms and signs began to return despite the fact I am still taking prednisone. My mom told me I should tell the doctor this, but I am very scared to do so. I know that sounds stupid, but I fear that if I tell him the truth, he will think I am a nut case and send me on over to psych or even worse – refuse to help me at all.
Well, that’s pretty much all I have to say. I will make sure to update everyone on the hospital visit after it’s done and over with.
Thigh gaps are a big deal in the world of eating disorders. In this video, I discuss the thigh gap fad as well as my experiences with thigh gaps.
My next video will be . . . . AN EATING DISORDER FAQ video. I haven’t done one of those in awhile and I think it would be just splendid if I did one. The only way though I am going to be able to create an Eating Disorder FAQ video is by you giving me some questions to answers. So if you have a question that you would like me to answer in this next video, PLEASE COMMENT BELOW 🙂
When most people think of eating disorders, there are two illnesses that usually come into people’s minds – anorexia nervosa and bulimia nervosa. Both of these brain disorders are extraordinarily serious and can cause a myriad of life-threatening complications such as severe kidney damage, esophageal tears, and even heart failure. Now what if I were to tell you that there is another type of eating disorder that most people, even those who are members of the eating disorder community, have never heard of despite the fact that this ED can become life-threatening much faster than anorexia or bulimia ever can.
The eating disorder I am talking about is diabulimia. Have you ever heard of it? No? Yep, that’s what I thought. In this post I hope to shed some light on what this ominous illness actually is and raise awareness for this very unrecognized ED.
What is Diabulimia?
Diabulimia is a portmanteau of the words diabetes of bulimia and is an unofficial medical term that describes an eating disorder that occurs strictly among those with type 1 diabetes mellitus. Those suffering from diabulimia intentionally omit taking their insulin injections in order to achieve rapid weight loss. How do they lose weight by not taking their insulin? Well, in order to understand that I am going to have to give you a quick crash course on what type 1 diabetes mellitus actually is.
Type 1 diabetes is an autoimmune condition of the endocrine system where an individual’s pancreas stops producing insulin. Insulin is an extraordinarily important hormone that allows the cells in one’s body to get the glucose they need to function. When the body is unable to produce insulin, the glucose is unable to enter the cells and glucose builds up in the bloodstream which causes high blood sugar or hyperglycemia. Hyperglycemia can cause a wide range of effects including fatigue, increased hunger and thirst, frequent urination, and let’s not forget weight loss. The reason why type 1 diabetics lose weight is because since there is such a high build up of glucose in the blood, the kidney filter it out and the excess sugar is excreted in the urine. When a person has diabulimia and refuses to take their insulin, they become hyperglycemic which causes them to urinate out the excess sugar. Because these sugars in the urine obviously contain calories, people with diabulimia are basically purging through urination.
The Scary Facts about Type 1 Diabetes and Eating Disorders
Compared to the general population, eating disorders are extremely prominent in type 1 diabetics. It is actually believed that 1/3 of those who have this chronic autoimmune condition have been trapped in Ed’s prison. Why do diabetics have such an increased risk for eating disorders? Just as it is with ED victims who do not live with diabetes, there is not just one answer. Some people hypothesize that because diabetics have to be hyper-vigilant about of what they eat and how much they eat, that this could possibly predispose them to developing ED behaviors. Another reason why diabetics are so prone to EDs may be due to the fact that many diabetics go through rapid weight gain after the initiation of insulin therapy. This weight gain may take a large psychological toll on the individual thus causing them to seek out unhealthy ways to get back their skinny physiques.
The Consequences of Diabulimia
As you know by now, when type 1 diabetics omit their insulin, they become hyperglycemic. Therefore, both the short-term and long-term consequences of diabulimia are usually the direct result of relentless high blood sugar.
The short-term consequences include . . .
excessive appetite, thirst, and urine production
diabetic ketoacidosis (DKA) – this condition occurs when there is a severe lack of insulin in the body which causes the cells to not get the nourishment they need. In order to get some form of energy, the body begins to break down triglycerides in adipose tissue (fat) and release a ton of fatty acids into the blood. This extremely excessive release of fatty acids causes the liver to produce something called ketone bodies. These ketone bodies are very toxic and if left untreated, it can lead to severe illness and even death.
changes in sleep
dizziness, headaches, and brain “fog”
The long-term consequences include . . .
severe kidney damage or even kidney failure
heart attack or stroke
Treatment Centers for those with Type 1 Diabetes and Eating Disorders
Center of Hope of the Sierras – this eating disorder treatment center is located in Reno, Nevada and offers a specialty track for those suffering from an ED and type 1 diabetes. http://www.centerforhopeofthesierras.com/
The Melrose Institute – this ED center is located in St. Louis, MN and is actually in collaboration with the International Diabetes Center at Park Nicollet. This unique collaboration allows patients with a dual diagnosis of type 1 diabetes and an eating disorder to receive state-of-the-art, comprehensive care. http://www.parknicollet.com/eatingdisorders/
Eating Recovery Center – Located in the picturesque city of Denver, Colorado, the Eating Recovery Center is a remarkable facility that has the capability to treat many of the health complications ED patients face. They are able to do this because of that fact that they offer around the clock nursing care and daily visits from medical doctors. ERC also is able to treat many co-occuring illness including diabetes, mood disorders, gastrointestinal disorders, and other organ issues. http://www.eatingrecoverycenter.com/patient-eating-disorder-treatment/why-eating-recovery-center-for-patients/
Cumberland Hospital – This facility, located in between Williamsburg and Charleston, VA., provides children and adolescents who are dealing with brain injuries, chronic illness, and neurobehavioral issues with a safe, therapeutic environment. Cumberland Hospital offers a program specifically designed for adolescents who have a dual-diagnosis of diabetes and an ED. This program teaches these adolescents life-long skills such as healthy eating and exercise habits, cooking, and medication management. It also helps adolescents work through the many issues that come with an eating disorder like poor body image, self-esteem, and negative attitudes. http://cumberlandhospital.com/chronic-illness/diabetes-and-eating-disorders/
As you can probably tell from this vlog’s title, my body image is horrendous. I feel like I am a blubbery whale with two colossal legs and because of this, the idea of going out in public fills me with dread. I fear people will stare at my revolting physique and whisper amongst their beautifully thin friends about my hideously overweight body.
With each passing day, my eating disorder’s cruel voice has become stronger and stronger. Though I have mustard up the courage to ignore some of the things he says, I am realizing that it is not possible to ignore him forever. His voice is just two loud and he is becoming too powerful.
I feel so bad for having to write a post so negative as this one, but this is honestly what the real world of eating disorders is and always will be like this – a living hell.
If you were to look online, I am sure you could discover a plethora of inspirational stories about dying anorexics who cheated death and freed themselves from their eating disorder. But for every patient who survives the horrors of this dangerous and sometimes fatal brain disorder, there is a story of a patient who has spent a majority of their life in and out of hospitals and treatment centers. These are the patients who, no matter what evidence-based therapy they receive or how much weight is restored, are chronically relapsing. And each time their eating disorder forces them to return to their starvation diets, their physical state continues to go further and further towards a point of no return. Their heart becomes weak, the functions of their vital organs begin to go haywire, and whatever life was in them slowly fades away. Realizing that their quality of life is greatly diminished and that the world of modern medicine cannot rescue them from their eating disorder, many chronic anorexics long to end their suffering by discontinuing treatment. Of course though, family members, friends, and medical staff have a hard time accepting this – actually many don’t accept it at all. They force the patient into treatment by getting court orders claiming the patient does not have the ability to make medical decisions. Though there are anorexic individuals who I believe are cognitively impaired due to their eating disorder and unable to make life and death decisions, I do believe this is not the case for all of the chronically anorexic population.
The majority of chronic anorexics have suffered considerably, both emotionally and physically, during the course of their illness. They realize that their prognosis is grim and it is quite apparent to everyone around them that the idea of them achieving a full recovery is nothing but a dream. Yet despite this realization, doctors and family members continue to insist that the patient receives futile medical care. We all know that with legal authorization that the anorexic can be force fed through a feeding tube, but many of these chronically ill patients sabotage this form of treatment by yanking out the tube or even secretly diluting the feeding tube formula. There is even scientific literature stating that if an anorexic completely refuses to cooperate, these invasive measures to stuff the patient with nutrition are likely to fail and even physical progress (ex: weight-gain, medical stabilization) that is achieved using these measures are short-lived.
In my opinion, there comes a point where doctors and members of the patient’s family must accept that curing the eating disorder is not a viable option anymore. It is not humane to make the patient continue to have such a poor quality of life because they are constantly in and out of hospitals and endlessly force-fed. When it becomes obvious that a patient is unresponsive to comprehensive, evidence-based treatment, I believe the patient has the right to palliative care and hospice. These two humane alternatives allow the patient to pass away comfortably and be able to end their seemingly endless struggle with their severe, treatment-refractory eating disorder.
Now I know many of you might disagree with me and before you start typing furious comments in response to this post, please consider this example. Let’s say their is a patient who is struggling with cancer. For years this patient has battled the disease and has received intense doses of chemotherapy, radiation, and has even enrolled in multiple clinical trials in hopes some experimental medicine would end his/her fight. Unfortunately, the cancer has metastasized and now curing the cancer is no longer a possibility. The doctor has suggested to put the patient on a chemotherapy regimen in order to keep the cancer at bay and prolong the patient’s life. After much deliberation, the patient has decided NOT to go on the chemotherapy regimen and instead receive palliative care until the time of his/her death comes.
I argue that a patient with chronic, treatment-refractory anorexia nervosa is no different than the patient with incurable cancer I described above. If an anorexic patient has suffered with their disease for so long and has been unable to respond to treatment at even the renowned hospitals and ED centers, the patient has the RIGHT to end to treatment and receive compassionate palliative care. PERIOD.
Last night I did something I know I shouldn’t have done. Before I did it, I knew that I would feel terrible after. I knew I would wish I was never born. I knew I would want to lock myself in my room and cry for hours on end.
Yet for some reason, I ignored the few logical thoughts in mind and listened to the voice that I still trust with all my heart – my ED.
Now, before you read any further, let me tell you that what I did didn’t involve me violent throwing up the contents of my stomach or drastically restricting my caloric intake. Actually, the thing I did really wasn’t an eating disorder behavior at all, but I know it was Ed who told me to it because I could recognize the cruel sound of his voice from a mile away.
What I did was look at pictures. Not just any pictures though.
The pictures I was examining were the images of me last year – the year where it was quite evident I had relapsed. It was the year where my face was as pale of Wisconsin’s winter snow and where my cheek bones protruded from my face. It was the year my arms looked like bones with skin wrapped around them and my legs were as stick-like as a bird’s. It was the year where if you looked into my eyes, you wouldn’t see me anymore. My personality had checked out a long time ago and Ed was now calling every part of my skeletal body his home.
The logical side of my brain knew that I was very ill and I looked rather frightening, but I couldn’t help but long to look like that again. I am now 103 pounds at 5’5 and I have never weighed that much in my life. I look in the mirror now and wish I could be a skeleton again. I long to go back to the body where size 0 jeans where too big on me and I had to wear clothing designed for 10 year-olds instead. I long to go back to the body where I could wrap my boney fingers around the top of my arm and have them overlap. I long to go back to the body where I looked like what I want to look like now – an anorexic.
P.S. If you haven’t check out my new eating disorder update video on YouTube, make sure you do today. Just click here!