FACES OF ARFID Series, Samantha

Samantha Leinhardt, Daughter, diagnosed with ARFID at 16

Denise Leinhardt, Mother, ARFID Advocate

Florida

Samantha Leinhardt, who was diagnosed with ARFID when she was 16, is an 18-year-old who was lucky enough to get help for her eating disorder. She participated in an in-patient residential program for seven months for treatment and is now well. I talked to her and her mother about what it was like living with ARFID. This is what they want others to know about Avoidant/Restrictive Food Intake Disorder.

What are your limitations with ARFID?

Before I got help I only ate a few foods. The foods had to be made a certain way or be a certain brand. I only ate at certain restaurants and didn't want to try new ones. Food was never really fun or social for me, it was just something I had to do.

Safe Foods:

• Chicken nuggets (1-2 certain brands)

• Pizza (but I removed the cheese and sauce); Our local pizza guy called me "the pizza killer"

• Pasta (plain, plain, plain)

• Broccoli (just the top)

• Candy

• Plain white meat chicken (only my mom’s is what I really ate)

• White rice

• Brownies

• PB&J on Wonder Bread only

What steps did you take to get help?

I went to TK in Chicago but they misdiagnosed me and then my insurance canceled me for residential. So I came back to Florida and went to Oliver Pyatt centers (A partial hospital program with boarding). I finished there at the end of June 2016.

How have things changed since treatment?

As of today I am not afraid to try new food. I don't eat fish. I have pretty much tried everything now, even Indian food. Of course I am still most happy with my safe foods but I can now (and will) go to any restaurant or home and eat what they have. I am not big on vegetables but I eat broccoli. I think the biggest thing I learned in treatment is that nothing is going to harm me if I try new things and I won't gag or throw up. I still have a terrible fear of vomiting. I think a lot of kids with ARFID do.

What is the most frustrating thing about ARFID for you?

Samantha: I think it was all the fighting and yelling at me to eat but I just couldn't. Also that so many doctors just don't know about it.

Denise: I think the hardest thing for me, as a parent, is that doctors do not know about ARFID and also how it has affected Samantha’s physical health over the years.

What do you wish others knew about ARFID:

Samantha: That it's real and hard to be this way, and that every case is different.

Denise: That it really is not a choice; it's an illness and can be triggered at any time.

If you met someone newly diagnosed with ARFID, what words of encouragement would you offer that person?

Samantha: It's a lot of work but it's worth the fight and if you listen to your team you will be cured of your fears around food.

Denise: I would tell them that it is not something that you can cure on your own. It takes a good, strong team of professional people to help you but it is curable.

What do you want society to know about ARFID?

Samantha: It's curable and if you don't take care of it you could end up with other medical problems.

Denise: That it's real and a lot of times being a picky eater is not just that. Check it out if it's gone on past a few months. It’s a condition. Just being picky is a choice. People with ARFID most of the time want to eat but can't.

You can read more about the personal journey of Samantha at Denise’s website: www.arfidourjourney.com