To Whom It May Concern,

Dear Medical Community, I know you have your hands full with diseases like cancer, autoimmune inflections and such. I respect the progress that has been made to treat such ailments that are all out of a person's control. While all the advances in medicine that have been made through the years is an amazing feat, I am still saddened. Saddened because I am a mother standing on the sidelines searching for hope for something that is out of my son’s control. I ask humbly, where is the research in ARFID and where is the effort to effectively treat patients like my son who battle their mealtime monster everyday?

Now, some of you may be asking, “What is ARFID?” Well there lies the beginning of the problem. All too often, I walk into an examination room with my son and the doctor assigned to his care does not even know what the acronym stands for. If you do not know what it means, it stands for avoidant restrictive food intake disorder. When doctors and nurses actually know what those 5 words together mean, they often refer to the most newsworthy case of the UK teen who went blind from his diet of french fries, chips and slices of ham. If you search ARFID in the news, you read pieces of journalism that may accurately define the disorder by saying things such as “the fear of the act or sensation of eating certain foods” but then go on to belittle the sufferers by saying things like “it’s just a fancy way to say you don’t like to eat fruits and vegetables.”

ARFID is not just a cop-out disorder that was added to the DSM-5 to appease parents who were tired of battling picky eating. ARFID is a living monster that has taken hold of my 6 year old son. It’s a monster that tells him it’s only safe to eat 4 brand specific foods. It’s a monster that tells him that meats are the enemy and fruits and vegetables are against him too. It’s an overwhelming feeling that even being near “unsafe” food will make him have the urge to throw up. It's the headaches, the stomachaches and the excessive emotion when it comes to food. There is no reasoning with my son that just because his favorite brand of yogurt changed the packaging that they didn't change the contents so therefore can still be a safe food. ARFID does not discriminate against age. It does not discriminate in terms of gender. It can make a patient underweight, overweight or seemingly healthy looking simply because of the foods that person’s monster deems to be acceptable to consume.

Over the years, the restrictive nature in my son’s eating habits have become increasingly difficult, both for him to cope and for us to manage his health. As parents pleading our case to the physicians we encounter, we have been treated like we are the root cause of his behavior towards food. We have been shamed and made to feel that if only we had pushed harder to make him eat one more bite of mashed potatoes way back when or had taken away his video games as punishment that we wouldn’t be in the position that we are now. I’m sure that could be true for the vast majority of picky eaters just going through a phase, but when a parent is insisting that it’s more than that… PLEASE listen to them. I implore you that before you dole out the advice to take away their nutritional supplement so, as you say, they will be hungry at dinner to the parent struggling in your office, please look into the child’s eyes and have a real conversation about food. Really watch as the panic washes over their face. I will be the first to tell you that there are some kids and adults that would honestly rather starve then face their phobia associated with food.

These issues with food are not a battle that is unique to my son. There are people suffering who have never heard of the disorder, have been misdiagnosed as having anorexia nervosa or who choose to remain silent out of fear that others will judge them. We have to do better as a society to help those that can’t help themselves. My mission as a mom is to make sure that my children and my children’s children are able to live the best possible life that they can. I live in an almost constant state of fear that the next time my son runs a fever, that we will be right back in the hospital being told that his condition will improve “simply by enforcing a better diet.” Those words are easy to say, but not easy to actually accomplish and we as an ARFID community of sufferers and caregivers need the medical community to step in and give us the resources to make a better diet even remotely possible for them. It's not fair to us to be told what to do without a way of actually getting it done.

I want nothing more than to see my son grow into a strong and healthy young man. I understand that it might take a miracle for him to eat in a way that others will deem as normal. I would settle for compassion, understanding and hope of a better tomorrow for him. Compassion can only come from truly understanding the disorder. Understanding will only come from researching and publicizing what ARFID is and what causes it. Hope for a better tomorrow is something we can’t strive for until research leads to better therapies and treatments options.

I don’t think wanting better options is something that’s too much to ask. Medical communities outside of the US have been seeing real progress being made through hypnotherapy and other cognitive behavioral treatment plans that you just can’t find walking into a local medical office here in the United States. Don’t get me wrong, we have had fantastic doctors, nurses and therapists that have worked with our family over the years but there’s only so much that they can do. Some have even told me that everything they’ve learned about ARFID, they had learned from working with us. We see a therapist to specifically address his overall anxiety who was so excited she was going to an eating disorder conference that was featuring ARFID. She was hoping to bring back a new therapeutic approach or two for us to try. When we came in for our next session, she sadly had to report that every last suggestion they had made was something that we already had in place.

This may be one of those situations that until it really impacts someone important we may not see the change that we hope for. It’s sad to say and even sadder to think about. I don’t wish this disorder on anyone but until people take the time to realize that ARFID isn’t just something that someone needs to “suck up” and get over, this monster is going to be a constant presence in my son’s life. I want him to feel comfortable sharing a family meal and socializing with friends. Food is such a huge part of our everyday lives. It’s so easy to take how easy eating comes for most of us for granted. Just as we all have different athletic and academic abilities, the same goes for our physical and mental abilities where even simple tasks like eating can be greatly hindered. Often times we see the words "failure to thrive" on our son's medical records, all I want is for someone out there to find a way to finally help us change that for him. Sincerely, Just one of the overly worried ARFID mom's looking for answers