My daughter has had an eating disorder for most of her life and because of its uniqueness, we didn't clue in until she was about 7 or 8 years old. Prior to that, we thought McKaelen was simply a very picky eater. When she was little, I kept pushing the worry out of my head, thinking she would get better, that she would grow out of her strange eating habits. But finally, we would learn that what she had was much more serious.
McKaelen didn't starve herself and she didn't binge and purge. She has avoidant/restrictive food intake disorder — or ARFID — and you'll probably be hearing that acronym more often as it's been recently added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). It's serious, it's real, and it's a mental disorder that has affected our daughter and our whole family for many years.
Unlike anorexia or bulimia, ARFID is not image-based or caused by a self-esteem issue. ARFID, in simple terms, is the extreme fear of trying new foods. I have learned that sometimes ARFID begins at a very young age from a food trauma, when a child has a bad feeding experience, or when he or she chokes on a food. People with ARFID may gag or vomit if they are forced to eat a food they are not comfortable with, or they will simply refuse foods they think are not safe to eat. And that was such the case for our daughter, who is now 17.
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Since the time she was a baby, McKaelen was an extremely picky eater, and only ate a few "safe foods." This consisted of waffles (with chocolate chips on them — no syrup or butter), white bread, French fries, pizza with the cheese scraped off, apples with no skin, raw baby carrots, crackers, chips, cookies, and cereal. Cakes, candies, and ice cream were also okay.
As you can imagine, dining out, parties, social gatherings, and holidays were a nightmare, not only for McKaelen, but also for the whole family. I would pack a baggie of carrots and a peanut butter sandwich when we went out for dinner and we would hope for the best. If French fries weren't on the menu, we were out of luck.
My husband and I would go through phases with McKaelen. She looked completely healthy and played sports when she was younger, so we weren't worried about her health and not being active. But then our worries switched to, Is she getting the right nutrition for a 10-year-old girl?
It was a never-ending, constant battle worrying about what we should do with our daughter. Especially since she was the middle child of two brothers who never refused foods. We knew this was not normal.
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My husband and I spent so much time going back and forth over what to do and how to solve the problem. And then we'd wonder if there was really a serious problem. Was this just picky eating? Sometimes McKaelen seemed completely fine, healthy and happy. Other times things got so out of control, we'd worry that she'd never outgrow this "thing" and she'd live on Goldfish and waffles her entire life. There were years of battles, bribes, tears, and tantrums as we navigated our way to figuring out what was wrong.
Prior to a diagnosis, there had been trips to her pediatrician, nutritionists, and therapists — all of whom did nothing, all of whom said she was fine, because she looked healthy. Everyone said she was just picky and she would grow out of it. But as parents, we knew it was something more.
Finally, when she was 15 and we were no longer able to live in denial, we took McKaelen to an eating disorder treatment center. We met with a doctor who knew about ARFID, and McKaelen was finally correctly diagnosed.
I remember being in that room when we first heard the word ARFID and how relieved McKaelen and I felt to have a name for what she had. It felt so reassuring. We didn't know if she could get well, but we knew finally there was a reason for what was wrong. And that we could figure out a way to help her.
There are sensory and texture issues that play a huge part in the diagnosis of ARFID. There is also a piece to ARFID that's unique, and that's the severe depression and anxiety that comes along with the fear of food. This is because a kid with ARFID will socially withdraw. It's easier to decline invitations to sleepovers or parties than attend and field questions on why he or she doesn't eat what's being served. So an ARFID kid usually spends more time alone and becomes depressed. There's also often the element of anxiety when a child is faced with eating in public — how can she maneuver through a social dinner when Aunt Maggie asks, "Why aren't you eating your vegetables, sweetie?"
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It's awkward for the parent as well, when you want to stick up for your child because you know she has eating issues, but you don't want to be berated by others when they say, "Oh, just feed them what you're serving — they'll eventually have to eat when they get hungry enough."
Because that is not the case.
ARFID children will not get so hungry they will finally eat. It is physically impossible for them to do so. They will gag or vomit. It is a legitimate fear and others need to realize that parents are not placating their child who has ARFID. It's a serious disorder and those who suffer (and I do mean suffer) need professional treatment in order to get well.
My daughter is getting well.
McKaelen attended a 20-week intensive outpatient therapy program where she met with a nutritionist and a therapist and had group teen therapy three days a week. She was encouraged to try new foods and talk openly about her disorder with peers. It was an extremely difficult time for her. Because of her hard work and dedication, she graduated from the program a month early. She has come a very long way in the last two years.
She's now eating so much better than I could have hoped. Previously, she never ate meat. Now she enjoys hamburgers and eats chicken. She eats salads with dressing, grilled cheese sandwiches, fruits, granola bars, quesadillas, fettuccine Alfredo, and all sorts of nuts, which are great for protein. Before therapy, she would have adamantly shaken her head and clamped her mouth shut when offered a new food. Now she will accept it graciously and try it … and it's okay if she doesn't like it — it is enough that she tried something new.
Stephanie and McKaelen today
Stephanie Elliot
McKaelen is blossoming into a young woman who is socially adapting and capable of doing anything. ARFID is no longer holding her back from what she wants to do. She used to have debilitating anxiety and panic attacks so bad she had been taken to the ER a few times. ARFID is a terrible disorder that disrupts the whole family if you're not all aligned with the big picture. And that big picture should be to get help for your child.
If you have a loved one that you suspect may have ARFID, start researching ways to get help. It’s a relatively new disorder but the more we talk about it, the more health professionals will take this disorder seriously and start learning how to treat those in need.
If you or someone you love has an eating disorder, contact the National Eating Disorders Assocation for help: 1-800-931-2237
Stephanie Elliot is the author of the forthcoming young adult novel, Sad Perfect, based on McKaelen’s journey with ARFID. It is available on Amazon. For more information on ARFID, please visit http://stephanieelliot.wixsite.com/arfid
