How avoiding appointments, not speaking up, and lying can and will hurt you:
For some people, making an appointment to see a doctor or therapist and actually showing up can be quite stressful. However, for people who have an eating disorder (ED), sometimes even the thought of making an appointment can evoke so much anxiety that they never even make one.
For those who do happen to make and come to their appointments, sometimes an opportunity is missed to get the help they need. This is due to their avoiding discussing or minimizing eating disorder symptoms and behaviors; leading to potentially devastating consequences.
It is important to try and understand why people who have eating disorders have a tendency to be anything less than open and honest with their medical providers or therapists because they are the ones who can help them get the treatment they need to get better.
Likewise, it is so important for people who have eating disorders to know about all of the potentially devastating consequences of these illnesses if left untreated, and to understand how not seeking help and avoiding honest disclosure can negatively impact their lives.
In looking at why a patient who has an eating disorder would be hesitant or anxious about making an appointment, the answer is not clear-cut. Each and every individual with these struggles has their own unique reasons for why they might not seek medical advice or treatment.
However, there are some common reasons why patients will avoid help:
1. Fear of getting weighed
Many eating disorder patients are so anxious about the scale and being weighed that this alone is enough to keep them from scheduling an appointment.
Many patients weigh themselves several times a week or several times a day with no clothing on. This number tends to have an immense amount of power. If the number is higher or lower than, say, the previous weigh-in or some “magic” number they have set in their mind, it can affect their mood and/or self-esteem.
For example, if the number is higher, they may experience distress. This can result in them engaging in or planning to engage in increased eating disorder behaviors. If lower, they may have a temporary feeling of calm, though they may also experience stress around keeping their weight this low.
So, going into an appointment where a stranger is weighing them on a scale in a public hallway where “everyone” can see their weight, and wearing all of their clothes, can be a scary experience that they want to avoid at all costs.
2. Fear of no longer being able to have their eating disorder
This may sound odd, but as much as people who struggle with and say they want to recover from their eating disorder, there can be an underlying fear about no longer having it. These behaviors may have started in order to help them cope with or escape from some pain or problems. So for them, it has become their way of continuing to do so.
Taking away the eating disorder is scary because they have been avoiding and numbing themselves from their pain and struggles for so long that if they were suddenly to stop, they may start to experience pain or have to face issues that their eating disorder has been helping them avoid.
Likewise, eating disorder behaviors can be ritualistic and give some people a sense of control. Whereas they may not be able to control such things in their life as their emotions or their weight, they do believe that their eating disorder behaviors are the one thing they actually can control. There is a fear that if they get help or get better, then they will be completely “out of control.” This can result in avoidance of treatment and seeking help.
Similarly, someone struggling with Binge Eating Disorder may look forward to their binges and get comfort from the food. The thought of not having that there when they need it or mistakenly believing that they “must” give up all of the foods they love in order to get better might far outweigh the desire to no longer feel physical pain or guilt after a binge episode.
3. Their own irrational/limiting thoughts and beliefs
Patients often talk themselves out of going because they fear the doctor will not believe them. This usually stems from the patient themselves having doubts about if they even have an illness, or they had an experience where someone in their personal life did not believe them or brushed them off when they tried to open up to them.
Common beliefs from patients are that they are not “thin” enough or that they weigh “too much” and are “too fat” for anyone to really believe that they are sick.
Similarly, others who don’t “fit” the eating disorder “stereotype” (i.e. young Caucasian female), worry that because they may be older, or of a different culture, gender, or race, that they will be dismissed, not believed, judged, criticized, or even ridiculed for thinking that they could possibly have an eating disorder.
These limiting beliefs are so powerful that many patients, unfortunately, talk themselves out of getting help.
It’s important for patients to realize that doctors and therapists are not mind readers, and only know about the symptoms and struggles that patients report. Those who struggle with EDs can start to get help by opening up and telling their doctors what behaviors, thoughts, feelings and physical symptoms they are having. Doing this is an important first step in getting help.
4. Ultimately afraid to be open and honest/holding onto their secrets
This is the really hard part. When a patient actually makes it to the point where they are sitting right in front of the doctor or therapist and has the opportunity to say what is going on and to tell them how much they are struggling – when they finally have their chance to ask for help, they sometimes clam up and say nothing. They hold onto all of it, continuing to keep it all secret just like they have from everyone else in their life.
It can be a scary and surreal moment for a patient to divulge, maybe even for the first time, all of their eating disordered behaviors, thoughts and feelings, what they’ve been ashamed of doing and thinking and what they’ve been judging themselves for and therefore covering up.
Many just can’t do it. Shame and fear of judgement prevent them from disclosing. They realize that once they say something, they cannot un-say it. Saying it makes it real.
Unfortunately, the majority of medical doctors receive little to no education or training in medical school about eating disorders. Their knowledge is limited regarding what to look for or what to ask patients in order to determine if an eating disorder is present. So, if a patient does not speak up, the likely scenario is that their eating disorder will go undiagnosed and undetected.
Nobody can look at someone and tell if they have an eating disorder. So, if a patient who is suffering says absolutely nothing to their doctor about their eating disorder symptoms, what happens then?
1. The patient may get misdiagnosed and treated for an illness they don’t even have.
Eating disorder symptoms can look like symptoms of other illnesses. For instance, someone who struggles with bulimia nervosa and vomits several times a day, may be misdiagnosed with gastritis or IBS.
Likewise, a therapist may diagnose someone with Obsessive Compulsive Disorder instead of really understanding that the “ritualistic” behaviors their patient is engaging in are tied to the Eating Disorder.
This could lead to several follow up appointments, resulting in time, money and energy wasted on “treating” the wrong condition; medications or procedures prescribed for incorrect diagnoses can have unintended health consequences.
2. The patient may be told something that further confirms their distorted and faulty eating disordered (ED) thoughts, resulting in an increase in symptoms and behaviors
after the appointment.
If someone went for help, but their provider said something such as: “Well, everything looks great today, except your BMI puts you in the overweight range. We need to talk about what you are eating and how much you’re exercising,” or “Wow, you look amazing! You lost weight. Whatever you are doing, keep it up!”, they might hesitate to open up about their eating disorder.
However, if the patient had opened up about their eating disorder, their provider probably (hopefully) would not have made either statement, and the focus would have shifted onto treating their eating disorder.
Regardless, hearing something like the first statement in an appointment is likely to result in an increase in feelings of guilt and eating disorder thoughts. We’d likely see a corresponding uptick in eating disorder behaviors.
Hearing the latter statement might justify and increase eating disorder thoughts and behaviors. After all, they were just told how “great” they looked; it’s all working!
3. The patient’s symptoms continue untreated for years, leading to many a number of negative consequences, including the worst case, death.
Physical Consequences of Eating Disorders
The consequences of eating disorders, unlike other mental health disorders, are evident in physical health complications. Left untreated, they can lead to a long list of physical complications as well as serious and life-threatening illnesses such as:
- Organ failure
- Heart failure
- Kidney failure
In fact, eating disorders have the highest mortality rate of any mental health illness.
While the tendency for most people with an eating disorder is to avoid or prolong treatment, that is the worst thing they can do. Research on treatments for eating disorders indicates that early identification and treatment:
- Reduces symptoms
- Improves the speed of recovery
- Increases the likelihood of recovery
With time eating disorders increase in symptom severity and become more resistant to treatment, so getting treatment early is key.
While the physical complications alone are concerning enough, choosing not to speak up and get help can also lead to negative consequences in other areas of someone’s life.
Struggling with an eating disorder can be a lonely and isolating experience. The compulsion to engage in eating disorder behaviors is what contributes to this isolation. For instance, someone with an eating disorder may decline social invitations so that they can:
- Fit in that much-needed time for exercise that their eating disorder is telling them they “have” to fit in or else they will feel “guilty,” be agitated, or not allow themselves to eat.
- Finally get home and binge.
- Avoid having to eat in front of anyone. Many social events revolve around eating, and the last thing they want is to worry about what there will be to eat and/or having any possibility that someone may comment on their food.
- Control what they eat and “stay on track.”
However, many with eating disorders also struggle with low self-esteem and confidence; thinking and believing that they are unattractive or won’t be “fun” to be around. So, they:
- Decline social invitations, which over time starts to result in their friends no longer inviting them out. Their social support network can deteriorate with time.
- May also cause rifts in relationships with family members as they distance themselves and stop engaging in events and activities.
- May end up damaging their romantic relationship by withdrawing emotionally, physically, and sexually.
Most of the time, eating disorders start with behaviors intended to help individuals feel better.
Someone might start a diet in order to lose a few pounds to “look and feel more attractive.” This, they thought, would bring them confidence and happiness. Little did they know that starting a diet could eventually lead to the development of an eating disorder, resulting in an emotional experience that is the exact opposite result for which they were hoping.
Most people with eating disorders struggle with the following psychological/emotional consequences:
- Obsessive thoughts and compulsive behaviors (especially regarding food and/or exercise)
- Low self-esteem
Perhaps one of the most impactful, yet not often discussed, are the financial and economic consequences of having an eating disorder. For instance, the costs for maintaining eating disorder behaviors while engaged in the illness can add up significantly:
- The cost of binge food adds up over time. The Science of Eating Disorders estimates that the average cost spent per week on binge food is $30.50; or almost $1,600 per year. Some individuals spend at least twice that amount, or $3,500 a year.
- They also estimate that compensatory behaviors (e.g. diet pills or laxatives) can cost an average of $1,468 per year.
Perhaps most notable of all costs is that of eating disorder treatment. Inpatient treatment alone can cost an average of $30,000 a month, whereas intensive outpatient treatment averages $7-10,000 a month. Even outpatient treatment, which usually consists of individual appointments with a team of providers including a therapist, nutritionist, psychiatrist and/or medical doctor can be quite costly, averaging, at minimum, hundreds of dollars a week. Medical insurance coverage varies in terms of how much treatment is covered, often leaving patients financially drained.
Moreover, research has found that individuals with eating disorders have greater annual health care costs, lower employment rates, and lower earnings among those who were employed compared to their peers who don’t have eating disorders.
When considering that someone who has an eating disorder may incur a rather significant increase in expenses and yet may also be less likely to be employed and to afford these extra expenses, over time, the financial stress of having an eating disorder is a consequence not to be overlooked.
Eating disorders, by nature, are isolative and secretive illnesses whereby those that have them feel high levels of shame and tend not to disclose much, if anything at all, about their behaviors, thoughts, or feelings. Getting necessary treatment requires open and honest conversation with a doctor or therapist. Yet, as discussed, many fear doing so and end up avoiding contact with providers or not honestly disclosing their symptoms when they actually see them.
While we can work toward training doctors and therapists to interact with their patients so as to facilitate more frequent disclosure, the reality still exists that unless patients make and show up for appointments and take the risk to be honest and ask for help, that they won’t get any.
The harsh reality is that if someone does have an eating disorder and they do not get the treatment they need, there are real consequences that will negatively affect all areas of their life, including their lifespan.
Avoiding, lying and minimizing symptoms can be harmful and dangerous. Honestly disclosing can provide access to supportive, impactful, and life-saving care. It is never too late to get help.
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About the Author:
Cristina Castagnini, Ph.D., CEDS, is a licensed psychologist and is recognized as a Certified Eating Disorder Specialist by the International Association of Eating Disorder Professionals (IAEDP). Dr. Castagnini earned her bachelor’s degree in psychology from The University of California, Santa Cruz, her Master’s Degree in clinical psychology (with an emphasis in Marriage and Family Therapy) from Pepperdine University and her doctoral degree in counseling psychology at the University of Southern California. She completed her Postdoctoral fellowship at Kaiser Permanente, where she continued to gain specialized supervision and training in eating disorders. For the past 15 years, Dr. Castagnini has been treating patients with a variety of mental health diagnoses, supervising postdoctoral residents, and serving as her department’s Eating Disorder Champion. For the past 13 years, she has also been helping individuals, couples and families in her own private practice. She is currently a member of the Academy for Eating Disorders (AED), The Center for Mindful Eating, The International Association for Eating Disorder Professionals (IAEDP) and is a Body Image Ambassador for the Body Image Movement (BIM).
Written – 2019