I originally posted this on my personal blog, since it has nothing to do with diabetes, pageants, or being Miss Idaho, but my director encouraged me to post it here as well! After seeing that the reaction on my personal Facebook page and blog were the complete opposite of the negativity I expected, I decided I would respost it here as well. Thank you to Tami Urquhart and the rest of the Miss Idaho board for your patience and understanding this year while having to accommodate for my eating disorder!
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"I speak all over the country about the importance of loving who we are, and emphasize that we should appreciate the things about that make us feel different and self-conscious. They make us unique. Not only should we tolerate and not try to hide our insecurities, but instead we should celebrate and learn to love them. The world would be boring if we were all exactly the same. Diversity is wonderful, stimulating, and makes the world interesting. Yet, we have a slight fear of, and feel uncomfortable with, things that make the people around us seem foreign. Whether it is a difference in physical appearance, culture/religion, sexual orientation, or the fact that someone has a disability or maybe struggles with a mental health problem. That fear causes us to judge others, and that judgment is sometimes cruel and is always unnecessary. It is not our place to share our negative opinion about other people just being themselves, even if it does make us uncomfortable. Those comments from others are exactly what cause each of us to think that something is wrong with who we are or what we look like.
Lately, I have been feeling like a hypocrite. I have a secret—one that I am beyond ashamed of and never would have dreamed about sharing. I hate it. I sometimes hate myself because of it. After my speeches about self-esteem, I kick myself over not taking my own advice: love yourself. Love what makes you different. At my high points, and actually the majority of the time, I do love myself. However, at those times, I love myself in spite of this insecurity, rather than because of it. Unlike realizing that my insulin pump totally rocks because I’ve used it to inspire other people, and that my shame about being talented “only” at math and science, and being secretly obsessed with reading as an adolescent (rather than the “cool” stuff, like sports, singing, art, dancing, and whatever else my peers seemed to excel at) was silly because in real life after high school, those are the talents that really matter, I hate this other specific insecurity and don’t know if I will ever learn to love it. I’ve learned to laugh at the things make me a little weird, like my hands that are too big, or my that my nose wrinkles way too much when I laugh, but I can barely tolerate or accept the thing I have been trying to hide since I was born.
Something that is encouraged in the diabetes community is to not hide the disease. Many times kids do not want their peers, or even teachers, to know. In my experience, I have found that in settings like that, where I have a small amount of anxiety about people looking at me weird, I find that I can actually attract less attention to my diabetes if everyone is aware of it. My friends and family have become blind to my pump, and when my glucometer beeps loudly with a result, they no longer notice, as it has become white noise to them. They are used to me eating at strange, otherwise seemingly inappropriate times. On the other hand, those things are all odd to those who are not aware that I have type 1. So, in the hope that by sharing about this, I will receive less hurtful comments, questions, and stares, I am writing this.
It is difficult to hide my biggest insecurity. Actually, it’s impossible. If you have spent an extended period of time with me, you most likely know about it. Unless you are a family member or inseparable best friend, you may not understand it.
I have an eating disorder.
It is not at all based on body image. I love my body. I love it when it’s Miss America ready, and I also love it when my tummy is poochy after stuffing my face with carbs, when my skin is a mixture of blinding whiteness and homely red blotchiness, when I am make-up free, and when I’m breaking out. Because, guess what? Despite the fact that I am a “beauty queen”, it is nowhere in my job description to be anyone’s eye candy. It is, however, encouraged for us to be confident and love how we look, even at our worst, and set an example for girls to help them understand that there are much more important things about us than our appearance. Anyone who bases his or her opinion on me based on my appearance is not worth my time or energy. There is nothing about my body or physical appearance that I would ever change to make others happy. Some personality traits and habits, on the other hand, I wish I could.
I do not have an eating disorder because I hate myself; however, I [sometimes] hate myself because I have an eating disorder. I suffer from SED, which stands for Selective Eating Disorder. It is has recently been changed officially to ARFID: Avoidant Restrictive Food Intake Disorder. The disorder is often mistaken for simply picky or fussy eating (which is a choice), and because of that, people are relentlessly cruel, disgusted by the thought of a 21-year-old woman acting like a spoiled child. Picky or fussy eating is a normal part of child development, and is grown out of once one has reached adulthood. ARFID, on the other hand, is a mental disorder involving a phobia of foods, flavors, and textures that is not outgrown and can be linked to other medical issues or disorders. It can cause lack of nutrition, and also sever anxiety and depression.
(see chart below)
Throughout my life, and still today, it is nearly impossible to anyone to take my disorder seriously. I did not even know it was a problem among others until I got past the age at which it was appropriate to be picky. I quickly found support and reassurance online from other adults who reported mainly eating grilled cheese sandwiches, pancakes, chicken nuggets, (sound familiar close friends?) and other mildly flavored and tamely textured “children’s” foods that make up the majority of my diet. ARFID was added to the DSM-V (Diagnostic and Statistical Manual of Mental Disorders), which brought me even more peace knowing that experts in eating disorders were able to differentiate between simple picky eating and the disorder I have suffered from since I was born.
(Here are links to more information on the disorder, and stories of other people who also suffer from SED/ARFID: Kayleigh Roberts, Mealtime Hostage Blog, The Center for Eating Disorders (with info from the DSM-V), Ella Minker, No Thyself Blog (anonymous), and if you are still interested, ask Google. :D )
Most comments, especially from people who spend more time with me, are concerned about my nutrition. I understand that, and appreciate that you care about me. However, I have had to answer questions about it my entire life, and my conversation with you (SURPRISE) is not the first time I have been told what eating healthy food means. Wait, you mean it’s important to get protein and vegetables into my diet??? I had NO IDEA! Thank you so much!
I apologize for that. I have been thinking it inside my head for the past 21 years, and figured I would get out that sass while it isn’t directed at a specific individual.
I, obviously as someone who as competed in pageants with a swimsuit portion, care about my health and staying fit and in shape. Unlike other eating disorders, which are usually based on trying to lose weight, people ARFID struggle with fitting things into their diet that are not purely made of carbs. They can suffer from being overweight, due to the unhealthy foods they prefer, and can also suffer from not weighing enough because of avoiding food in any social situation. As someone who travels a lot, that is nearly impossible, and my priority then honestly is to just find something that will give me energy to get me through the day. When I am at home, however, I get creative to make sure I am getting as much nutrients as I possibly can. It is a challenge. Most vegetables, and pretty much all fruits, have flavors that I can tolerate, and even enjoy. Their textures, on the other hand, trigger uncontrollable gag reflexes and my body will not accept them. In order to get my fruits and vegetables, I make fruit and veggie smoothies on a regular basis. Whether they are made of liquid or in their traditional solid state, all that matters is that those foods get into my body (a fact that people don’t really like to accept for some reason). The strides I have to go to in order to stay healthy are weird, untraditional, and embarrassing. I hide them. I dread discussing them. They are also not anyone’s business except mine, my parents’, and my doctor’s.
The greatest challenge while living with ARFID is having to eat in social settings. Whether I have an empty plate, one with a few chips, rolls, or whatever the single item on the menu is that I am not afraid of, or have brought my own grilled cheese or peanut butter sandwich making supplies, I stand out. Questions are inevitable. Even when delivered in the kindest, most innocent way, they still crush me. All I want is to be able to eat, and have everyone around be blind to the fact that I am not eating what they are: to complete ignore it; to not feel the urge to point it out; to let me just be me, sans judgmental curiosity. I will answer any question on diabetes. I am fine discussing politics and religion all night long. I die of embarrassment when I am forced to talk about food. I beg you, please do not make me. Please ignore it. I experience extreme anxiety for hours, sometimes even days, leading up to banquets that I am hired to speak at, dinners at new boyfriends’ houses for the first time, and even at family reunions with cousins who resent that I, unlike them, am not grounded for not eating my green beans, and therefore don’t let me forget how awful of a person I am for being different.
There is no treatment for ARFID since it is rare and just recently recognized as a legitimate disorder. The most important things while managing it are: 1) trying to be as creative as possible in maintaining a healthy diet and 2) managing the, often extreme, anxiety and depression that it causes (due to social situations, and also traumatic encounters with foreign foods). Again, unlike picky eating, ARFID is not a choice. I would never, ever choose to live with this disorder. I wish everyday that I could change. If you insist on telling me that you still believe it’s a choice, please save your breath and keep your comments to yourself.
I am writing this because of a last-straw incident that, like basically every other time I have to eat socially, ended in tears, suicidal thoughts, a revival of self-hatred, and my heart being shattered. I am hoping, like when sharing about my diabetes, that the people who care about me will remember this the next time we are eating together. Even if you don’t care about me, please find an ounce of empathy in your heart to let me feel normal for once.
I have made a list of the comments and “frequently asked questions” that I encounter in almost every social eating environment, please excuse any of my own comments that sound harsh. Again, I have 21 years of hurt and bitterness built up.
ARFID Don’ts:
· Do not blame my parents.
I can handle getting picked on and judged myself. It sucks, but I have to deal with it everyday. What really puts me over the edge is when someone says, “isn’t your dad a doctor?”, “why haven’t your parents taught you how to eat healthy?”, “that would never, ever fly in our household. We tell our kids that they eat what they are given, or they starve”. Comments like those don’t just hurt, they infuriate me.
How dare you? How DARE you?! I have the greatest parents in the world. They recognized that I had something much more serious than a typical child’s picky eating. A common sign, and huge issue, with living with ARFID is that we will actually choose to starve before putting something in our mouths that we are terrified of. Experts think that this is usually, but not always, caused by traumatic food experiences in early childhood, which leads me to the next reason my parents realized they shouldn’t force me to eat anything: the vomiting and gag reflexes that were triggered when they did. And, like how I think good parents should, they didn’t let me starve. They don’t mock me in public eating settings. They help me avoid them when possible. They respectfully explain to hosts about my disorder so they are not shocked or surprised when I don’t put much on my plate. They tell me to ignore people who judge me and do not understand, and they do what they can to make sure we figure out ways for me to eat as healthily as I possibly can.
· Lecture me on my nutrition.
Thank you for caring. I really do appreciate it if you are not asking questions in a condescending way. However, I am already aware that I need protein, fruits, and veggies in my diet. I just get them differently than you do. I will take care of my body; you take care of yours. End of conversation.
· Attempt to force me into to trying new foods.
First of all, 99% of the time you will not succeed. If you persist, I will most likely break off our friendship because of how uncomfortable I feel. I have even ended romantic relationships because of it. It is a phobia, and people with ARFID chose to starve over eating something their body won’t accept. Breaking off relationships is nothing compared to starvation.
· Succeed at forcing me into trying new foods.
If you do manage to get me to put something in my mouth, I really hope it is not something you cooked yourself, because the vomiting that inevitably follows may offend you. A sign of ARFID is avoiding trying new foods at all costs, especially when we are not in private, because we know the consequences of putting the food into our mouths is much worse than not attempting to at all.
· Talk about it to other people—both behind my back and in my earshot.
The exception to this is if I have asked my parents, boyfriend, or best friend let people know to please not mention any weird eating behaviors of mine during an event I have had extreme anxiety about.
· Tell me you think it is a choice.
What is wrong with you? You are not me. You do not understand my mind. Please study the meaning of “empathy”. If I could change, I would in a heart beat. Obviously. That has always been my answer to, “if a genie gave you 1 wish, what would you ask for?”. I want to be normal. Do you think I enjoy your critical, condescending interrogations every time I am trying to enjoy an evening with friends/family? And, hypothetically, if it were a choice, it is my body. It being a choice would still not give you any right to treat me cruelly or judge me. If you lack any empathy towards my condition, than I highly doubt you are genuinely concerned about my health or nutrition.
· Tell me I am missing out on “so many wonderful foods”.
I am terrified of food. I despise flavor. Please respect that.
· Warn me that there will be many social gatherings in the future that I will need to eat food at.
There have also been many social gatherings involving food in my past. I am more aware of this than you will ever know. Thank you for the reminder. Please keep it to yourself.
· Laugh at me at a restaurant as I order a grilled cheese off the kids’ menu.
I am fully aware of the fact that I am a 21-year-old woman. It’s not funny. It’s embarrassing.
· Don’t tell people I “don’t eat anything”.
I eat a lot (in quantity, not variety), you just don’t see it. Eating disorders already have a negative connotation; please do not embarrass me more than I already am.
I am sorry for my harsh, sassy tone above. Now, if you have read this far, it is clear that you really do care about me and want to better understand the condition that you have so many questions about. Here are a couple more don’ts, that don’t make me angry, but I want you to know about:
· Please don’t feel bad if you invite me to a dinner party and there is no food for me to eat. I really am used to it, and will eat before or after. My anxiety doesn’t lie in not having something to eat at an event, it lies in people commenting on it being burdened by my disorder. Please, don’t worry about me. I will be fine, and will just be grateful you invited me and didn’t make a comment about the fact that I’m not eating.
· Please don’t choose a restaurant based on whether or not they have something for me on the menu. Seriously, as long as no one comments on the fact that I didn’t get anything, I sometimes appreciate having an excuse to not spend money on eating out.
Overall, all I really want is to be able to go to social events without having to be noticed (in a negative way), judged, or question. The best thing to do is just ignore me. If I really need something, I will ask. If in doubt about whether I will be comfortable with a question or comment you have, either don’t ask, or ask me in a setting in which I am not expected to eat.
Finally, another reason I decided to write this, and “come out of the pantry”, is that part of the depression that follows a social event (such as the recent incident) includes, again, kicking myself over the fact that I travel the country telling kids to not only tolerate, but love the things that make them different. Here I am hating and despising myself over my eating disorder. I don’t think I will ever love it. Unlike with my diabetes diagnosis, and all the wonderful things that came out of it, I would wish my ARFID and my entire experience with it away in a millisecond if I could.
What I have learned is that sometimes, the good things that come out of the obstacles in life are not always great enough to make the bad experience worth it. Nothing replaces a lost loved one. Nothing can take back the damage of a traumatic or abusive childhood. However, I do believe that there is always a silver lining in every situation, even if it is teeny tiny.
I have never seen a silver lining in my eating disorder until this last traumatic event, but I think I have finally found it.
Living with this disorder that so many people insist is a choice, and painfully knowing the truth that they will never accept, has given me a great ability to empathize. There will be people I meet with differences that I don’t, and can’t, fully understand. I know what it’s like to have people refuse to listen to me, not accept me for who I am, and mercilessly berate me. If nothing else good ever comes out of living with this disorder, I know I will do my best to never, ever be one of those people who judges too quickly, when it is not my place, or when I haven’t walked in someone else’s shoes. I hope that I will never make a comment that is cruel, or hurts someone’s feelings, about something that they can’t help. I will keep the pain I have felt in mind when I see a child misbehaving and feel irritated with his parents; we may not see it, but he may suffer from autism or some other mental or social disorder. I will remember what it feels like to be judged the next time I see a homeless person and do not know their story. I will never blame an obese person for their weight problems by assuming their weight is their fault or due to laziness. I won't make assumptions about people's intelligence, work ethic, or worth as a human being based on the fact that they are on food stamps and welfare. Empathy and compassion are the most important values I have, and if my disorder helps to better exemplify them, I am grateful.
Thank you for reading this if you have gotten this far. It would really mean the world if even one person took the time to better understand my condition. Xoxo."