Hello Nicole - September 2000

Dear Nicole,

I am really bothered by my disability’s effects on my appearance. At seventeen, I only weigh fifty pounds. I fit into a size fourteen in little girls! I get really sick of people thinking that I starve myself. I don’t know what person in their right mind would want to be THIS thin. It seems like everywhere I go there’s someone trying to stuff a big plate of food down my throat so they can “fatten me up.” I feel really strange at restaurants or when I eat in front of a group of people because they always take notice at what I order and how much of it I eat. I don’t eat as much as everyone wants me to because, well quite frankly, I have no where to put all that food! Another thing I don’t like is how it takes me FOREVER to eat. I try to turn down invitations to go out to eat but this makes people think I am really weird too! I just don’t know what to tell them anymore and, honestly, I think they are all rude to be so in my face about it. Don’t you? What would you tell people who kept saying you are “TOO SMALL!” as if YOU didn’t know!

Sincerely, Too Small

Dear Small,

I can really relate to this question because when I was fifteen years old I weighed forty-eight pounds. It also took me forever to eat and people were constantly telling me I looked like a starving person. My low weight was caused by my disability making it hard to chew but my problem was greatly compounded by my nervousness over eating with everyone commenting and shaming me for my eating habits. Since then, I have figured out how to make foods edible to me by blending them or overcooking so that my weight is no longer a problem. However, the nervousness and self consciousness about eating has not gone away as emotional scars take much longer to heal.

It is hard enough trying to “fit in” as a disabled person without having special negative attention drawn to our differences. I think that it would’ve been so easy for someone to say to me, “Is there anything I can do to help you eat?” Part of the reason my weight problem went on so long is that I was too ashamed to tell anyone I was having trouble chewing. I already felt bad about myself and so this would prove there was something wrong with me. I made the choice to starve rather than let people think there was something wrong with me.

For all of us, disabled or not, what others think of us is of utmost importance. Of course there are always those who say they don’t care what other people think, but they are not being honest. Everyone cares. We want others to respect us and like us. Human nature is social and naturally we want to fit in and be accepted. Our teen years are when we are supposed to be learning how we fit in. It makes a lot of sense that your weight, trouble eating and people’s reactions to you would be especially painful right now, although I am sure it would bother anyone of any age to be treated the way you are.

Yes, I do think it is rude for people to be so intrusive and overbearing about your eating. Unfortunately, a lot of people just don’t know how to approach this kind of problem ­ it seems so simple: “Just eat!” I remember getting very angry when people tried to force me to eat like I were an obstinate child. I know they were worried about me and thought they were doing what was best, but, because no one understood my issues, there was an underlying condescension and impatience in their demand to eat.

It¹s easy to react defensively when others are pressuring you. You have every right to be angry. But if I were going to do something different than I did, I would have tried harder to just be open. To say, “Yes I know my weight bothers me too but I can¹t eat that plate of food because” or “I know you are trying to help but what you¹re doing is making me feel worse.” You need support not force. This style of talking might be more helpful in getting support. On the other hand, if you need to just be rude or silent sometimes that is perfectly OK, you are only human.

Eventually I found that although I believed “everyone” was disgusted about my weight there were a few people who cared and weren’t judging me. With the support of these people I gradually started to talk about my problems eating. Talking about it not only opened they way to begin solving the problem but also eased some of the burden around my deep dark secret. When we are in pain we need love and acceptance, if instead we receive harsh judgement the hurtful results can be long lasting. Even now I am uncomfortable eating because of all the time I ate under scrutiny and shame.

There is nothing wrong with you for being small. You are a valuable person regardless of your weight, appearance or ability. It is unfortunate that people can be so insensitive and judgmental. But by watching them we see how important it is to be caring and sensitive toward others. One caring person can make all the difference in the world.

— Nicole

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