Some Eating Disorders Increase the Odds of Death 18-Fold
Trigger Warning: This article covers one or more eating disorders in graphic detail.
We began to notice eating out was often a struggle, even around the sixth grade. Just a picky eater, right? I mean, we all have our preferences. We made room for her to assert her will as she began to grow into adulthood.
Then, favorite foods started to disappear from her diet, exercise amount and intensity really picked up, and anxiety started to reach pressure cooker levels around foods she considered “disgusting”. Finally, on a trip with friends to the beach, we witnessed our daughter abandon the group to workout. The ultimate alarm: in a fit of desperate anguish, she ran out of a restaurant sobbing…panicked about the menu choices.
The rest of our drive home, my wife researched eating disorders on her phone and decided Piper had Orthorexia – a term with varying levels of acceptance in the eating disorder treatment community to describe a collection of behaviors that focus on “perfect” eating. We agreed to intervene and seek help.
In the weeks that followed our initial discussions with her – she, in complete denial; we, in utter despair – the physical signs of her disordered eating were becoming readily apparent. She was way too thin and had stopped menstruating – especially essential at her age for continued development and strengthening of bones. She was wasting away before our eyes, and we started to consider in-treatment programs while we tiptoed around tough topics to prevent another frightening blowup.
While we waited for an opening with professionals skilled in eating disorder recovery and lobbied mental health experts for help, we continued to clumsily insert ourselves into the decisions she was making around food and exercise. The gym trips on top of swim team practice had clearly become a way for her to purge without actually throwing up, so we sat her down one night to tell her there would be no more working out…She leapt from our kitchen table, ran to a drawer, pulled a knife, and started to try to slice her wrists in rage. Luckily, we were able to restrain her, her superhero sister calmed her down, and we got her to a hospital.
The months that followed were not easy, and Some of the way too deep talking was often tougher than I had imagined it could be. The struggles were complex and very real. I still spend many nights not wanting to leave her alone, but our youngest is well on the road to recovery. We were able to find a great team, which included us, to help her restore mostly normal eating and thought patterns, and we are confident she will be able to head off to school next year without concern for her mental health.
What was happening?
An eating disorder is any of a range of psychological disorders characterized by abnormal or disturbed eating habits. This pattern of eating leads to disruption in one’s behaviors, thinking, and mood and can eventually leave one unable to function in any number of areas: interpersonal relationships, social situations, school, and work. Ultimately, it can lead to severe disruptions in overall health, and even death.
In fact, eating disorders have the highest mortality rate of all mental health issues. Eating disorders may seem benign, but every 62 minutes, someone dies as a direct result of an eating disorder.
Studies report varying death rates from eating disorders, but there are common findings. Anorexia is the most lethal psychiatric disorder, carrying a sixfold increased risk of death — four times the death risk from major depression. A meta-analysis by Jon Arcelus, MD, PhD, of the University of Leicester, England, and colleagues found these standardized mortality rates: 5.86 for anorexia nervosa, 1.93 for bulimia nervosa, and 1.92 for eating disorder not otherwise specified (EDNOS). Research has demonstrated higher death rates for bulimia nervosa and EDNOS than these figures. According to one study, the mortality rate for anorexia nervosa patients aged 25 to 44 followed after hospital discharge was 14 times that of age-matched non-eating disordered peers. (That’s 14 times!)
According to Arcelus, et al, age plays a major role. Those diagnosed in their 20’s face the worst odds at 18 times the death risk of healthy people their age. Overall, Anorexia increases death risk:
- Threefold when diagnosed before age 15.
- Tenfold when diagnosed at ages 15 to 19.
- 18-fold when diagnosed at ages 20 to 29.
- Sixfold when diagnosed at ages 30 and older.
Warning Signs of an Eating Disorder
One who suffers from an eating disorder will continue damaging and destructive behaviors despite such compelling evidence these behaviors are not in that person’s best interest. Their driven actions may be caused by any number of factors and serve any number of purposes. Early intervention markedly improves treatment outcome, which is one reason to ensure individuals with eating disorders receive a prompt diagnosis and access to treatment, preferably evidenced-based wherever possible. If you or someone you love is showing any of the signs below, especially in combination, get help immediately:
Alterations in Weight
- Unusually marked weight loss. If the person weighs less than 85 percent of their ideal body weight and exhibits other characteristic signs of an eating disorder, this person can be diagnosed with Anorexia Nervosa.
- Many can still be close to, at, or even above their ideal body weight and still have an eating disorder. This is somewhat often seen in binging and purging behaviors typical of patients diagnosed with Bulimia Nervosa and includes restrictive, rigid rule based eating.
Preoccupation with Body Image
- May spend an inordinate amount of time looking in the mirror.
- Often makes negative comments about her physical appearance and insists they are overweight.
- May become preoccupied with certain celebrities and models on the Internet and in magazines, comparing themselves unfavorably to them.
- Wearing baggy clothing to hide their body shape. I am a 220 pound barrel chested bear of a man, and my sweatshirts became de riguer for my little girl.
Disruptions in Eating Patterns
- Stops eating with the family
- Develops strong dislikes to previously enjoyed foods
- Preoccupied with counting calories and fat grams
- Eats noticeably smaller portions or refuses to eat at all
- Starts binging on certain foods
- Drinks excessive amounts of water and caffeine to suppress appetite
- Goes to the bathroom after meals to vomit what they just ate
- May develop eating rituals such as:
- Chewing for long periods of time before swallowing
- Cutting food into small portions
- Not allowing different foods to touch
- Moving food around on the plate
- Taking a long time to eat
- Hiding food into napkins to throw away later
Preoccupation with Nutritional Content of Foods
- Classifies foods as good or bad, healthy or unhealthy, safe or unsafe
- Searches out organic, low-fat diet foods
- Frequently visits Internet websites focused on nutrition
- May suddenly decide that they are going to become vegetarian, vegan, etc.
- All of the above became concerns around our house, and this obsession with “right” eating became her “religion”
Changes in Exercise Patterns
- Becomes preoccupied with physical fitness
- Spends hours exercising in a ritualistic, rigid manner
- Talks about the number of calories that they burned and the time they spent exercising
- Becomes perturbed if their exercise routine is disrupted and eats even less to compensate
Use of Laxatives, Diuretics, and Diet Pills
- May show signs of irritability, depression, and anxiety
- May stop socializing and lose interest in previously enjoyed activities
Physical Eating Disorder Symptoms
- Fainting spells from malnutrition and dehydration
- Chapped lips and grey skin
- Hair loss
- Irregular or absent menstrual cycles
- Disrupted sleep patterns
- Musculoskeletal injuries and pain from excessive exercise
- Dental erosions from self-induced vomiting.
- Chronic constipation, gastro-esophageal reflux, and other gastro-intestinal problems
- Markedly low blood pressure and pulse
- Prone to upper respiratory infections
- Low energy
- Overall poor health
Nine Truths about Eating Disorders
“Nine Truths” is based on Dr. Cynthia Bulik’s 2014 “9 Eating Disorders Myths Busted” talk at the National Institute of Mental Health Alliance for Research Progress meeting.
- Truth #1: Many people with eating disorders look healthy, yet may be extremely ill.
- Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.
- Truth #3: An eating disorder diagnosis is a health crisis that disrupts personal and family functioning.
- Truth #4: Eating disorders are not choices, but serious biologically influenced illnesses.
- Truth #5: Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.
- Truth #6: Eating disorders carry an increased risk for both suicide and medical complications.
- Truth #7: Genes and environment play important roles in the development of eating disorders.
- Truth #8: Genes alone do not predict who will develop eating disorders.
- Truth #9: Full recovery from an eating disorder is possible. Early detection and intervention are important.
What Are the First Steps to Recovery?
If you, or someone you know and love, fits a pattern described above, it is important to get help as soon as possible. An eating disorder can quickly take on a life of its own and lead to a downward spiral of:
- Functional disruptions
- Broken relationships
- Loss of educational and occupational opportunities
- Deterioration in health
- Possible premature death
The treatment process can be started by contacting the person’s primary care physician for a physical evaluation, including laboratory studies and an EKG, and ask for or initiate finding the appropriate level of treatment for the eating disorder. This may be a therapist that is comfortable working with eating disorders, an outpatient eating-disorder program, or even an in-patient facility that specializes in eating disorders.
As I reread the lists and statistics above, I now see so clearly all we were missing, or more accurately, dismissing as normal teenage “junk”. We would celebrate a milkshake eaten on a weekend and convince ourselves we were seeing things. That is how the eating disordered individual wants it, or, more accurately, the disease wants it. It represents the closest thing I have seen to the metaphorical little devil and little angel on the shoulder scenario. The devil – the disease – is lying and convinces the individual to lie….Then, that little devil, the disease, puts on airs of being the little angel and starts to consume the mind…and the minds around the individual in the fight. So insidious. So scary.
Since today is World Eating Disorders Day, we challenge you to avoid being lulled into complacency or denial! Because eating disorders can often be successfully treated, especially when they are caught early, little can be gained—and everything stands to be lost—if one takes a hurry-up and do-nothing attitude towards this pervasive problem. Gather together a team. Stay strong in the journey.
Get help as soon as possible. There is hope.
Today, Piper is an incredibly healthy, super strong, vibrant and bright young woman with an incredible future. She has faced the same struggles we all do in college years, yet her recovery made her so much more capable to take them on, and she has thrived on campus and in school. Proud dad wants you to know she is on the President’s List every semester – straight A’s – and is planning a promising future in law.
She will tell you, she hated us A LOT during the recovery. We did not go easy on her, and we did not waiver from our resolve to hold her accountable to the tough stuff ahead. She faced it with resistance at first, and welcomes responsibility today with much enthusiasm.
While her life is now relatively care free, and she often says she does not recognize – in body or mind – the person her “before” pictures represent, she is the first to tell you it takes a team of unfaltering support to help you push through it all.
Do not ignore the warning signs. Get help and help others. Every phase of recovery can be challenging, and you just cannot get through it alone. Lean on your support team and lift up those in your life in recovery or who are celebrating their success in the journey.
Never lose hope.
DISCLAIMER: I am just a half-a-brain helicopter pilot and mechanical engineer turned accidental sales person who became an occasionally adept commercial leader. I am not a medical professional, so what I am sharing here should be in no way misconstrued as health advice. This list is not exhaustive. It is only some of what we learned in facing the fearsome specter of mental health gone askew in our own home.
#DidYouKnow that eating disorders can affect anyone, regardless of age, size, gender, race, sexuality, ability or socioeconomic status? Learn more and join @neda’s movement to ensure ‘Every Body Has a Seat at the Table’ this #NEDAwareness Week (2/22 – 2/28/21). nedawareness.org