21 things I Wish You Knew

Dear anyone who love someone with an eating disorder,

Hi, I hope you can understand what I am going to try to tell you. Thank you for listening to me.

First off, listening to me is the most important thing you can do. For years no one listened. And then for years people, good, well-meaning, people thought they knew what was best for me without really listening to me. Only I know how I am feeling and what I can handle. It doesn’t matter how well you know me. You can’t feel what I do on the inside.

Second thing I need you to understand. How I feel changes very quickly. I can be totally fine and then within minutes be in the middle of a full blown, throat closing, tight chest, about to throw up, reaction. Or I could be fine and then just plain not feel good with an upset stomach and nausea.

Speaking of nausea, the third thing I desperately need you to understand is that right now with my disorder, every time I eat, I will have nausea. Every time. No matter what it is. I could tell you the things that don’t make my throat close, but that won’t help with the nausea.

Now we come to number four. As you can imagine these two things: the nausea and the throat closing, greatly reduce m desire to eat. I do not like to eat. I need you to understand that. Eating is one of the hardest things for me to do. And I have to do it over and over every day. Please don’t make me.

Number five, I repeat: please don’t make me eat when I don’t want to. Sometimes I just can’t. My stomach and my throat just can’t handle it sometimes. And it’s not that I don’t like whatever it is your trying to get me to eat. You could make me my favorite thing in the world, but if I don’t feel like eating, then end of story I don’t feel like eating.

Number six, this isn’t always the case. Sometimes I don’t feel like eating the thing that is in front of me if I think it will be too hard to eat. But this can change too. Like I said in #2 sometimes how I feel changes out of nowhere. I’ve made myself something and then by the time it was ready, I didn’t feel like eating it anymore.

#7,It breaks my heart to do this to you. I do not want you to go out of your way for me. I know you don’t mind. I know you want to help me. I know you want to take care of me while I am with you. But I need you to understand that by you going out of your way for me it makes me feel worse.

Now # 8 is one of the most important for moving forward. It doesn’t really matter if you understand this one, and really you probably won’t. This is just something I need you to do. I need you to stop asking me what I can eat. There is nothing that I can eat if we are being for real. I can give you a list of about 20 things that I can eat that won’t cause my esophagus to swell, but that doesn’t mean those things will not upset my stomach, and it certainly does not mean I will feel like eating those things. You have got to stop asking me and stop demanding answers out of me. When you demand these answers of me that I cannot give it makes me want to cry and scream and punch things all at once. It makes me want to throw my phone across the room and throw my hands in the air. It makes me want to forget the whole thing. It makes me want to not come. It makes me want to go on hunger strike and not ever eat anything again. I am not being dramatic. This is really how I feel. Please stop asking me.

#9. I am not being dramatic, or picky, or spoiled, or a baby, or any other obnoxious thing this disorder makes you think about me. This is a really medical disorder within my body, and there is no cure. There is treatment, but so far none of it has been successful for me. Just understand that is real. Just bear with me.

#10 I am on no treatment because that was my choice. Let that be my choice. Don’t try to talk me into going back onto treatment. And if I do ever decide to go back, don’t try to talk me out of it.

#11. Don’t try to talk me into or out of anything. It I want to eat something that I know will make me sick, let me eat it. If there is something that I actually want to eat, it is a miracle. Just let it be. And again, if I don’t want to eat at all, don’t try to get me to.

#12. I am lactose intolerant, and this has absolutely nothing to do with my EoE. This is a completely separate reaction that happens in my intestines. If I have too much dairy, I will be awfully sick. So if you make something that has milk in it, please let me know so I can gage how much I should have. This doesn’t mean I can’t have it at all. I just can’t have as much as you would.

#13 I don’t normally eat as much of anything as normal people. So if I am not eating much, don’t pressure me to eat more. I don’t need you to check on me to see if I got enough either. I know you are just looking out for me, and I appreciate the gesture, but it just makes me feel like I am burdening you. I can gage how much I want to eat.

#14. Sometimes I will even want more. If I do, DO NOT MAKE A BIG DEAL ABOUT IT. I struggle with wanting to eat, so if I want to eat let me. You making a big deal about it makes me feel like something is wrong with me. It makes me feel like I am going to get fat, like my eating is out of control.

#15 Understand that I gained significant weight a while back. I am still carrying about 10-15 more pounds than I would like to. Don’t try to convince me that I look better this way. Don’t try to say that I was too skinny before. That is just about the worst thing you can say to someone struggling with their weight. I liked the way I was before, so don’t undermine that for me. Yes, I dropped 6 pounds here recently. No, I didn’t want to lose it by being sick. Nevertheless, I am happy I lost it.

#16. So, I know you’re reading this and are thinking this is all great, but what can you actually eat? Ok so I will try to answer this dreaded question. Understand that what I would feel like eating, what wouldn’t hurt my stomach, and what wouldn’t hurt my throat, are all different. So when you ask me what I can eat, I don’t know which one of those three things you want. That is why it is so frustrating for me.

1.      I like to be vegetarian. This is for multiple reasons one of which is that meat is hard for me to swallow. I can usually still eat meat that is ground or shredded. Not always though.

a.       I do not like it when meat is fatty. I can’t swallow that and I have to spit it out

b.      If meat is too tough I have to spit that out as well

2.      I don’t like things that are really greasy. This upsets my stomach

3.      I don’t like a lot of bread. That is hard to swallow. I can still have bread just not like big thick subs. Thin crust pizza is easier, but it can’t be too crispy.

4.      This is hard to explain, but I don’t like cheese that is globby. I like cheese and I like it melted on top of things. But when it gets all globby I can’t swallow it.

5.      I do better with dishes that are all mixed together like a casserole or soup as opposed to having things separated.

6.      I don’t like green beans or olives or an abundance of peppers, a little is ok but not a lot.

7.      I like dessert and honest to goodness for some reason it is usually easier to handle.

 #17: I am considering getting a feeding tube. Don’t see this as my giving up. Instead think of it as my taking charge of my life. All my life I have felt this obligation to eat like a normal person, but now I am starting to see through that. I am not obligated. I don’t owe anyone anything. A feeding tube would stop my painful throat closing attacks, and would most likely stop my almost constant nausea. Please support me through this decision.

Oh goodness, #18, I have to eat slow! Don’t rush me!!! And I don’t like it when people just up and leave while I am still eating. I don’t like to feel like everyone is waiting on me though either. So I can’ win. Just don’t rush me. If I feel rushed, I’ll be more likely to choke.

#19. If I do choke, just leave me alone. You can’t help me. It will either pass, or I will have to cough/throw up it back, or if it comes down to it you have to take me to ER. That has never happened.

#20 Basically when I have a throat closing incident just leave alone until it passes. This is very painful and can last over an hour. Just leave alone. Don’t ask me to do anything or really even talk to you.

#21. Let’s talk a little more about my food. Remember my desire to eat is low. So, I need what I am going to eat to look good first of all. If it doesn’t look good to me my desire to eat will go out the window, no matter how hungry I am. Then even if it looks good, if I don’t like it, I am not going to force myself to eat it. It’s not worth it to me.                                          

Ok that is all I think. Thanks for reading!