The Paradox of Living with Undiagnosed Eating Disorder

TW: This article covers Eating Disorders and what it is like to live with one, along with the long-term effects. This is a weighty and emotional topic; please only read if you have the emotional and mental energy. Reader discretion is advised.

Article Photo by Annie Spratt on Unsplash

Disclaimer:

Before the article officially delves into the topic of eating disorders, I would like to say that these are my personal experiences. Everyone experiences the disorders differently. My experiences are my own, which is valid, as are your experiences with your mental health.

This is my experience of what it is like living with an undiagnosed eating disorder. Although I am not a medical professional, if you feel that a description of any of these disorders fits you, I recommend talking to a trusted adult and seeking medical treatment. The list of the disordered eating types is not extensive.

That is what I could find. Some of these are not in the DSM-5 (the book to diagnose people) but are expected to be in the DSM-6.

The Paradox

I often call eating disorders a paradox. At least in my experience, there is often guilt associated with both eating and not eating. I am living in a paradox.

Knowing that I need to eat to survive and not wanting to eat because it makes me feel guilty to the deepest depths of my soul. There is this paradox, where you feel guilty, no matter what you do. If I eat, I feel guilty.

If I do not eat, I also feel guilty. I like to describe eating disorders like a starfish. Starfish do not have brains or blood, and yet, they are in complete control.

They can move around, and they can eat. They are a paradox. Eating disorders are similar; they live in the brain but do not have one themselves. They control how you live, and what you eat, where you go to eat, and how you look at yourself.

Eating Disorder, Definition:

The Oxford dictionary definition of Eating Disorders is as follows:

"any of a range of psychological disorders characterized by abnormal or disturbed eating habits (such as anorexia nervosa)."

The Diagnosis Process

As an undiagnosed teenager looking for a diagnosis, I can tell you; it's a lot harder than it should be. Many doctors will not diagnose because of it being a "phase." Plenty of them will not diagnose if you aren't a certain weight. In my experience, most places will weigh you with your back to the wall on the scale to help with the weight anxiety several people with eating disorders have. This practice is, so you do not see the weight and will not overthink it.

The Eating Disorders That are Out There

Many people know about the "main two" being, Bulimia Nervosa and Anorexia Nervosa. However, there is much more than just those two. Let me begin with a list.

1. Anorexia Nervosa

   • Anorexia Nervosa is characterized by a view of one's self-being overweight. Many people with Anorexia Nervosa seek to correct this by restricting their caloric and food intake. Oftentimes, the main goal is to lose weight. They often weigh themselves, and monitor it to get themselves to or under a "goal weight."

2. Bulimia Nervosa

   • Bulimia Nervosa is characterized by long and intense binges (Binges are mass intake of food). These binges will often last until they are painfully full. One thing is that people usually cannot control how much they eat during a binge.

     After the binge, the binging person will often attempt to make up for the mass caloric intake by purging in some way. That can mean using laxatives, forcing oneself to vomit, intense fasting, or intense exercise.

3. Binge Eating Disorder, or BED

   • Binge Eating Disorder is characterized by binge eating a lot of food in a short period of time. The person who is binging often feels a lack of control while binging. They do not participate in activities to attempt to make up for the caloric intake.

     However, they usually feel feelings of guilt and self-loathing because of how much they ate in a short period of time. People with Binge Eating Disorder often eat alone due to feeling embarrassed about their eating habits and not wanting to feel ashamed.

4. Pica

   • Pica is characterized by eating things that are not considered food. This includes flaking paint, hair, soap, dirt, and things akin to those.

5. Orthorexia

   • Orthorexia is characterized by an obsession with how healthy one's food is. Someone with Orthorexia is obsessed with eating healthy and pure foods. Orthorexia is an obsession with healthy and pure foods and the benefits of eating said foods. Oftentimes, these obsessions affect daily life.

6. Avoidant/Restrictive Food Intake Disorder (ARFID)

   • Avoidant/Restrictive Food Intake Disorder is characterized by what most people would call "picky eating." ARFID is, in fact, much more than just picky eating. The disorder is characterized by avoidance of eating various foods or major disturbances in one's feeding pattern.

7. Eating Disorder Not Otherwise Specified/Other Specified Feeding or Eating Disorder (EDNOS or OSFED)

   • EDNOS was the original term to describe people who have an eating disorder but do not fit into the categories set to diagnose one of the above-mentioned disorders. This term was changed to OSFED in the DSM-5. These are disorders. Just because the person who may have this does not fit into a category of another eating or feeding disorder does not mean that they do not have one.

Living Undiagnosed

I am undiagnosed. I have been told, by plenty of therapists, that I present all of the signs of an eating disorder, specifically, Bulimia Nervosa with anorexic traits. I've been to psychiatrists who will not diagnose.

Being undiagnosed is saying things like "Oh, I'm not hungry" or "I ate earlier," and things akin to that. It can also mean doing things such as eating alone for fear of judgment. I am in a constant state of recovery, with no one to turn to for help because I do not have the diagnosis.

Therefore, I must not have it. This is the logic I have been given, time and time again. Living undiagnosed means you carefully eat, you pick the foods that you know you can eat, and people will not tell you that you may not be excused from the table because you did not eat all of your food. Living undiagnosed is when I do eat, I eat alone, and I eat sporadically.

Photo by Annie Spratt on Unsplash

When it Gets Bad

Now, with me. I remember the first time I started experiencing the symptoms of eating disorders. I was a freshman in high school and had started a public school for the first time.

I stopped eating as frequently, and I lowered my intake slowly. It got to a point where I was eating one meal a week because I could get away with it. I would eat Sunday lunch at Mimi's house.

I didn't eat lunch at school, and no one realized it because I brought my own lunch. However, I never ate it. Often, I gave my food to people I noticed weren't eating and said I would eat later.

I usually didn't follow through with that statement. When I did eat, I would spend hours at the gym or purge by vomiting following the eating.

Media Portrayal

The media. It is a part of all of our daily lives. We go onto Instagram, Snapchat, and similar platforms.

Movies, TV shows, plenty of them have a portrayal of what it is like. Usually, it is a white teenage girl who is all skin and bones who believes that she is fat. I want to debunk this portrayal of eating disorders.

That is not always the case. While sometimes, yes, it is that portrayal, that is not the only situation where someone can have an eating disorder. There are men, women, and non-binary people alike who have eating disorders.

You do not have to be just skin and bones to have one. You can be muscular; you can be tall. You can have fat; you do not have to be a teenage girl losing weight at an alarming pace.

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The Silent Killer

Eating disorders are silent killers. Many people do not notice when someone has one. Now, when I say that they are a silent killer, I do not mean suicide, although they can lead to suicide.

For example, Anorexia Nervosa, as I stated, is the restriction of intake. When you do not eat as much as your body needs and keep that cycle, there tend to be detrimental results. Some side effects of Anorexia are a slow heart rate and low blood pressure, which can lead to heart issues.

Some more health issues that come along with this are muscular strength issues and bone density loss. This occurs because you do not have the nutrients that your body needs to sustain itself.

Bulimia has side effects as well. The binge-and-purge cycle has harmful side effects on the digestive cycle. These present some of the same issues of Anorexia, but the binge-purge cycle comes with its own unique issues. With the vomiting used as purging, tooth decay is one prominent issue, as when you vomit, it comes with stomach acid and deteriorates the tooth enamel and the teeth themselves.

Binge Eating Disorder comes with its own issues as well. For example, it oftentimes leads to high blood pressure, high cholesterol, heart disease, and Type II Diabetes.

Now, I would like to touch on the fact that I described eating disorders as silent killers. Eating disorders are some of the most underestimated, underrepresented, and unseen disorders. However, they are one of the most deadly disorder families. Due to all of the factors listed above, combined with the mental toll that it takes, which can lead people to suicide, this disorder family is very dangerous.

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What NOT to say

As someone who struggles, I can tell you what not to say to someone with an eating disorder, as I have had many of these said to me before.

1. "I wish I had that self-control. I could use to lose a few pounds myself."

   • This is an absolute do not. I have had many people say this phrase to me many times. Please do not romanticize my disorder; it does not help. Please do not tell me that I am doing a "good job."

2. "Just eat"

   • I wish it were this simple. If I could snap and make my brain allow myself to eat things that it doesn't consider "safe foods," believe me, I would. I miss eating potatoes in forms other than Gnocchi soup.

     I miss eating things such as pasta and things akin to that. But they are not safe, and I know that if the foods my brain does not consider safe. I will end up regretting it and entering the binge-purge-cycle.

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3. "If you're fat, what does that make me?"

   • Please, don't. Don't start with that. It is part of how our brain is wired to view ourselves.

     As someone who views themselves in this light, I would like to tell you. That statement and my warped thoughts only apply to me and my own decaying body. To me, you are a beautiful creature who walks this earth. However, I am not.

4. "You look better than ever!"

   • Again, please do not tell me that. I can understand that you are trying to help, but this is not a helpful statement. It is a very triggering thing for many people who have eating disorders and for me.

5. "What diet are you on?"

   • I am not on a "diet." Society glorifies weight loss, as we all know. There are Pinterest boards titled "Wear when I am skinny." Please do not ask me what diet I am on; it solidifies the fact that my weight loss is good, even when it is not in a healthy way.

6. "I'm so glad you ate."

   • This may seem like a helpful thing to say at the time, but I would like to remind you. Many of us who have these disorders already feel like people watch us eat and judge. Another thing to think about is that our brains have themselves wired as food is a bad thing, so oftentimes when we eat, we feel guilty because we disobeyed what we have ingrained in our head. So, unless it is a part of our treatment plan, or we ask for praise after we eat, do not tell us that you are glad that we ate.

7. "You're so skinny! What's your secret? I wish I had your willpower."

   • Yet another thing I get a lot when I start losing weight. My secret is that I cannot bring myself to eat because of how toxic my relationship with food is.

8. "Just stop binging/purging."

   • As I said with the "Just Eat" comment. It is not that simple. If I could snap, that would not be how things are.

     I would, but I cannot, and you cannot either. My binging is not based on a lot of willpower or self-control. It is, in fact, caused by too much self-control.

     It's caused by the fact that the person who is binging or purging hasn't gotten enough, and so they binge and then feel regret. They often feel caught when someone sees them eating. It is what several of us would consider shameful and supposed to be a secret.

     It is self-soothing. It is how I, and many others like me, cope with stress.

9. "I wish I could be like you."

   • No, you don't. You do not want to be like me, trust me. As someone who lives with this every day, you don't.

     As someone who cries because I know how bad it is. You don't. You do not want an eating disorder.

     You do not want to live as I do. I want to remind you. Anorexia is not a diet.

     Bulimia isn't a bad habit. ARFID and OSFED are not picky eaters. These aren't life choices; they are disorders that eat us from the inside out.

10. "Oh but you're so beautiful! You don't need to lose weight."

    • You do not see me the way I see me in the mirror. You do not see what I see. You do not see the valleys of my body as I do. The way that my brain works will not allow me to see myself as beautiful.

11. "It's all in your head."

    • Yes, yes, it is. Yes, my brain has changed the way I see myself. Unfortunately, however, so have people.

12. "It's unethical to lose weight like this."

    • Yes, yes. I know. I know that if I do not eat, my body will go into survival mode, and it will cling to the food that I do eat.

      I am aware of this fact, I know that it is unethical. However, that does not mean that I will be able to change without help. Medical help that is.

13. "Counting calories isn't that bad"

    • You say that. You say that until it becomes a fixation and an addiction. You say that until you realize that there are some people (like me) who have days where they count their calories and do not go over 700 a day. You say that counting calories is not bad until you live the life that I do, where counting calories is a quick way for a relapse to happen.

14. Put a trigger warning on food

    • This is not something people say, rather what they do. I do not need a trigger warning for food, as that makes my brain believe that food is the enemy. Food is not the enemy, my disorder is.

      Please help me, and many others, by not putting a trigger warning on food. It is not helpful, even if you think it is, it is not. Help us rewire our brains into thinking food is not the enemy. TWs solidifies those beliefs.

Things to Remember

Eating disorders are rarely about just how our bodies look. For example, I will explain what my therapist and I believe to be the root of mine. Part of it is being in control.

However, that is another small part. Most of it was how I knew that I was not enough for someone to stay. I know how unethical eating disorders are, how when you do not eat, your body goes into survival mode and clings to all of the fat you have.

Yes, my body is part of the issue, but that is not all of it. I was not enough. I was not enough for the most important people in my life to stay.

That was when I weighed more. Eating disorders are not just about how those of us who have them look at their body. It is seldom only that.

Eating disorders tend to spring from trauma. There is a reason they are there. They are a way to cope.

I was traumatized, and then I lost everyone. I was 120lbs. I was "healthy".

However, health was not enough for those that I loved to stay in my life. They left me, and thus, the disorder began. This is not a choice.

This is a disorder that is killing me slowly, as it does to many men, women, non-binary people, and children alike. Recovery is not a linear process. Please do not romanticize, and please do not glorify my weight loss.