Patient Experiences

Interview with the parent of eating disorder patient G.Ç.

Relatives Background Information

How long have you noticed changes in the patient’s eating habits or behavior?

It has first started with ‘’ Healthy Eating’’ and in 3 months I’ve noticed the change in the behavior.

Awareness and Recognition

When did you first become aware that the patient might be struggling with an eating disorder (ED)?

After noticing the change in the behavior, it took me almost two more months to understand that he was struggling with ED.

Were there specific signs or behaviors that raised your concern?

He was restricting the food. He was training excessively after the meals. He was limiting his carbohydrate and fat intake.

He withdrew himself socially. He was mostly preoccupied with the food, the nutritional values of the food and exercising.

Communication

Have there been any challenges in discussing the issue with the patient?

It was very difficult to communicate with him. He was always so irritable that at the end of every conversation about the food there was a huge fight. Eventually he had most of the time nervous breakdown.

Emotional Impact

Are there specific emotional challenges that you’ve encountered in supporting the patient?

Until he accepted his disorder, it was so difficult to convince him that he has a severe problem. The conversations with him almost always ended with dispute.

How has the ED affected the emotional well-being of the patient and the family?
Our family and our family bonds were affected severely. There was always quarrel and high volumed discussions. Nervous breakdowns became our daily routine. As a family we were all emotionally worn-out and tired.

Changes Over Time

Have you observed any changes in the patient’s attitude or behavior over time in relation to the ED?

He gradually ate less and less. He was very restrictive in terms of food selection, he mostly consumed relatively healthy food with low calories and in small portions.

How has the family’s understanding of the ED evolved?

As soon as we understood the severity of the problem, we got in contact with the professionals such as pediatrist, psychotherapist and nutrition consultant. We found also a psychiatrist to have a fourth leg in the therapy in case of an inpatient treatment and medication. Throughout the time we learned a lot from different sources like ED Consultation points, books, internet and families whose children got through this disorder.

Future Concerns and Hopes

What are your concerns about the future in relation to the patient’s ED?

Our biggest concern is a relapse.

What are your hopes and expectations for the patient’s recovery?

I hope he will cope up better with his emotions in the future which are the main source of this disorder. In addition, I expect that he will develop a better approach to the food and see it as a nice part of life and enjoy it rather than struggle with it.

Interview with eating disorder patient E.S.

Background and Personal History
- Can you share a bit about your background and personal history?

I am 13 years old. I am a 9^th grader at a gymnasium in Germany. I have an older brother and live with my family.

- When did you first become aware that you might be struggling with an eating disorder?

I became aware when my parents took me a pediatric cardiologist because of my health problems.

Awareness and Recognition
- Were there specific signs or behaviors that made you realize you might have an eating disorder?

Until the physical symptoms appeared, I did not realize I have an ED.

- How did you feel when you first recognized that something might be wrong?

I felt so scared, so helpless. My parents were there to help me but it was very difficult for me to deal with my emotions.

Experience of the Disorder
- How would you describe your experience with the eating disorder on a day-to-day basis?

I tried to eat less every day and was always keeping track of what I ate, I was counting the calories. If I ate a little bit more than I planned, I tried to get rid of these calories by exercising.

- What thoughts or feelings tend to accompany your eating disorder behaviors?

I isolated myself from my friends, I felt lonely. All my thoughts were revolving around food, calories, exercise.

Support System
- Who do you feel comfortable confiding in about your eating disorder, if anyone?

I mostly denied my ED, but when my feelings bothered me severely, I was somewhat comfortable talking with my parents.

- How has your support system (friends, family, etc.) responded to your struggles?

My family always supported me and tried to find best sources of help like a therapist, psychiatrist, nutritionist etc. They also informed themselves about the disorder to help me at home.

My friends were also so supportive and helpful to cope up with my emotions and problematic thoughts.

Goals for Recovery
- What are your goals for recovery from the eating disorder?

I had 3 months of in-patient treatment in a clinic and reached my weight goal there. My goal afterwards was applying what I learned in the clinic in terms of nutritional, physiological and psychological issues which are eating a balanced diet, adequate exercise, good relationship with the food, good management of emotions.

- Are there specific milestones or achievements that you hope to reach?

My biggest hope is to live a healthy life with a good relationship with my body, enjoy the food and consider food as a nice part of life.

Challenges in Seeking Help:
- Have you encountered any challenges or barriers in seeking help for your eating disorder?

No, I haven’t. My family, my friends and my therapist always supported me.

- Is there anything you wish people understood better about your experience?

I wish that people will learn more about the EDs and would not label the patients as spoiled teenagers. I wish they would approach the EDs as serious psychological disorders.

Body Image and Self-Esteem:
- Have there been changes in your body image over the course of your experience with the eating disorder?

Yes, my body image has changed throughout my journey. At first, I was very uncomfortable with my stomach and found myself fat although I had a normal weight. Gradually I learned and understood that I am valuable as I am and I’m happy in my body.