Proof There Are Others Out There

I ran across a vlogger today by the name of Morgan Gale. Morgan is a young adult who lives with ARFID. Watching the videos they posted had a two-fold effect on me. For starters, oh my gosh. Here is a young adult with a very similar sounding background to my Alex who is self advocating and well educated on their disorder. Happy tears were flowing through parts of the videos. But then on the flip side of things, here is an adult who is genuinely and rightly pissed off because the medical professionals brush them off as being just another mental patient with an eating disorder. How my heart hurts for anyone living this reality and knowing that it’s a lifelong struggle just to get others to listen. The first video I found of Morgan’s was one that they shared with another ARFID sufferer who was also a blogger. They had just met at the convention they were at and compared the reasons behind their phobias and some of the struggles they shared. Noelle, the young lady in the video has EOE, Eosinophilic Esophagitis, which is an allergic inflammation of the esophagus along with food allergies that are major contributing factors to her ARFID. She talked a bit about how it’s easier to talk to people about her swallowing disorder versus her eating disorder because even though they both have the word “disorder” in the names, they are held to different standards. Something that is seen as a physical limitation is acceptable whereas something that is based in anxiety is something you as the patient just need to get over and deal with. People don’t have the same respect for the physical limitations anxiety puts on our bodies. Anxiety causes muscle tension, headaches, stomach aches and can genuinely make you feel ill yet people tend to insist that it's all in your head and that you just need to learn to suck it up and deal with it. (Have I said that before? I feel like I've said that before.)

We did openly discuss the ARFID teenager’s health as a family last night. My purpose in doing so is never to scare him into food submission but to paint a picture of the reality of this disorder so he can understand why Mom and Dad fight so hard to see that he is as healthy as he can be. We want him to be just as educated as Morgan Gale is when he becomes a young adult. We want him to know the warning signs so he can tell us if something feels off and we need to seek medical attention. We want him to realize the importance his Pediasure has in his everyday health because some days it is a struggle and we have to stay on top of him to get him to drink his calories. Morgan openly reflected on a doctors visit where they were told flat out that it’s in their head. They went in because they were tired all the time and felt they were dealing with iron deficiency anemia and specifically asked for a blood test and were in turn criticized for it. Criticized for being an advocate for their own health. I felt the outrage as we too have been in that same exact predicament. After Alex’s 1st hospital stay, I remember about a year later feeling anxious because I was seeing him display similar symptoms of lethargy like he had in the week or so leading to his hospitalization and an increased frequency of nose bleeds. The specialist he had seen at Lurie Children’s recommended having his LFTs rechecked every so often to head off any further issues. I thought with that referral and the obvious history we had if I just called up his pediatrician and asked for them to order the lab that it would be enough. I was made to feel like I was insane for wanting labs run “out of the blue” on my child. I had to stand my ground that this wasn’t just a theory based on a mother’s paranoia but a legitimate possibility given my son’s medical history.

Watch Morgan's video below to see the frustration that is often felt when we deal with the medical community.

I found more information about Morgan and their struggles with ARFID on the blog Beautifully Imperfect. One of the quotes that stuck out with me when they were introduced on there was “you put something in front of me that’s not mild, like bread or cheese, I cannot eat it. I don’t even register it as something edible.” It makes me curious if that’s how Alex sees food. Safe foods he knows in his mind are edible obviously as he usually has no issues eating them. (Except if the manufacturer changes the packaging or there's a spot or blemish which causes him to lose trust in it.) Anything else and you might as well have put a plate of paper clips on the table in front of him.

I ran across all this because in the wake of the media coverage about the teen going blind because of his diet, (see my post from yesterday here) I was still knee deep in research looking for any and all educational material I could find not only for us as a family as we continue our journey but also for those naysayers blaming the parents all over the comment feeds.

I will never stop advocating for my child’s health and well being. I hope he will have the same fight in him when it comes to seeking treatments. I wish I could wave a magic wand and take away the fear of eating he and so many others have. I will repeat my sentiment from yesterday... there needs to be more recognition in the medical field and real work to help those battling have a fighting chance for normalcy. Maybe that "normal" doesn't mean a cure. Maybe that normal just means acceptance, understanding and improved health care options to help them be their most healthy selves. And for Heavens sake if you work in the restaurant industry... let adults order off the kids menu without judgment! (If you watched the first vlog, you'll understand that reference!) To see what Morgan is all about outside of their disorder, please visit https://morganashleygale.com/