When you can’t eat part two: the feels

Whenever someone asks me a question related to what it’s like not being able to eat, I usually shrug and say, “I don’t know, I’m just used to it,” and then change the subject.

I am used to it, but that doesn’t mean I like it or that I’m always okay with it. Not being able to eat can be really tough, but trying to put it into words is also really tough so a one sentence reply is just easier. However, I’m going to give it a go, here. Yesterday I covered the facts. The logistics. I talked about how it all works, not being able to eat. Time to delve deeper now. Today, let’s talk about how it feels.

First of all, I want to eat. I ate normally for 18 years so I know what things taste like and I have favourite foods. I get cravings and when I watch people eat I want to be eating, too. I know I’m part medical device at this point in time, but I’m still human, and as a human I’m hardwired to eat in order to survive. Not being able to is frustrating and sad, and that part never goes away, it just becomes part of your normal.

I cycle through different this-is-what-not-eating-feels-like phases.

There are times when it honestly does not bother me, when that frustration and sadness are easy to forget about. I sip on my ginger ale, I eat a lifesaver here and there, and I don’t really give it a second thought.

Then there are times when the absence of food in my life is impossible to ignore. Imagine going on a roller coaster that’s really fun at first but then you start to feel sick and you just want to it be over. Afterward you think “yikes, I don’t want to do that again.” Except everyone else had so much fun and wants to go again. You still feel sick and don’t want to feel worse, but you also don’t want to miss out on the fun, so you go with them once more. This time you have an even worse experience and so you decide you just cannot ride that roller coaster anymore. But everyone else is still having so much fun and they decide to ride it again. And again. And again. And you just have to sit there watching and waiting for them to stop riding the roller coaster. Yes, you are glad they are having a great time, but you feel so left out and it seems so unfair how something that is supposed to be easy and fun makes you feel so terrible. You hate your body for getting in the way of your ability to enjoy life. You’re stuck there just watching and waiting for everyone to get tired of that roller coaster, but they never do. Sometimes not being able to eat is like that, and during these ‘roller coaster phases’ I often find myself wishing I hadn’t gone to the theme park at all.

And then there are the in-between times. During these times I feel somewhat removed from it all, kind of like when you drive someone to or from the airport. You might think, “Oh I wish I was the one going away,” but it doesn’t really phase you that you’re not. Overall you’re just happy for your friend or family member who gets to go on an adventure. Except the thing is, when all you ever do is drive people to the airport without ever actually getting to take a vacation yourself it can be hard not to feel bitter. Lots of the time I don’t mind driving people to the airport, but I do get disheartened when I realize that I can go to the airport all I want yet I can’t ever actually get on a plane. Still, when I’m in this so-called ‘airport phase’ being part of the experience in some way, even if it’s just being along for the ride, is usually better than not being part of it at all.

The thing is, though, I wish I didn’t have to choose. I wish it didn’t come down to driving people to the airport or not spending time with them at all. I wish it didn’t have to make the choice to gather with everyone and watch them eat, or to not be part of the gathering at all.

But I do. I do have to make that choice because our social lives are built around food.

It’s one of those things you don’t realize until you’re on the other side, but think about it. Family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing.

Sure, I can be present for all of that, but it’s not the same as being part of it. I’m watching, not doing.

As a society we gather together around food. We celebrate around food. We sit around the table or cozy up with our coffee and tell stories, recount memories, and discuss topics of all different depths. If I want to be part of that then I have to put up with being around other people eating while I fight against the basic human instinct to do the same. And that sucks. I hate being the only one not eating, but I also hate missing out on anything. I don’t want to watch my friends and family eat food that I wish I could eat, but I do want to spend time with them.

It’s an impossible situation.

RCH TPN (3)I make a conscious and consistent effort not to think or talk about this too much for two reasons. One, I don’t want anyone to feel like they can’t eat in front of me or feel bad when they do. As hard as it is not being able to enjoy food like everyone else, it’s even worse knowing that they are enjoying it a little bit less because of me. I already feel a lot of guilt knowing how my health problems spill over into other people’s lives so the very last thing I want is for those people to have to adjust their lives for my sake even further. I don’t expect people to avoid eating in front of me and I think it would be unreasonable of me to do so. People gotta eat! I have to eat, too, I just happen to do so via my veins.

The second reason is that thinking about this all the time doesn’t help matters or change anything. Some days are harder than others, and some days the constant fight wears me down, but at the end of the day I try to be very accepting and matter of fact about it all. I can’t eat and that’s just the way it is. I can’t sing either. Or whistle. I let myself feel sad when I need to, I let myself lament sometimes that life isn’t fair, I stay away when I need to, and then I just do my best to focus my energy elsewhere. Life is hard enough without constantly thinking about how hard it is.

Now here’s where this sad posts gets happy. I don’t have food, but I do have people. Not only do I have awesome friends who also can’t eat and who understand what it’s like, but my friends and family who can eat also happen to be awesome. And not only do they understand when I don’t want to sit at the table with them, but they are just so delightful to spend time with that they make sitting at the table worth it. I would give almost anything to be able to eat, but I wouldn’t give up the people in my life.

Sure, I wish I lived in a world where I didn’t have to choose between food and people, or rather between being around people while they eat food and not being around them at all, but that’s not how it works. I do have to make that decision. When I lay it out like that, though, it doesn’t seem quite as impossible a choice to make. People with food or no people at all? People win.

I may not be able to eat, but I do have a reason to be at the table, and for that I am grateful.

Reason to go to the table

Sister, brother-in-law and brother. My all time favourite reasons for being at the table!

 

 

11 thoughts on “When you can’t eat part two: the feels

  1. You got it in one again, Catherine. You always find clever and effective metaphors to explain the almost unexplainable. To elucidate the intangible emotional effects can be very difficult but you manage to do it every time. I like how you delve deeper to reveal the emotional reasons behind behaviour that can sometimes confuse those around us; e.g. just because we can smile and brush off our situations with a public quip (I’m used to it), doesn’t mean we enjoy or even accept our situations. The face or mask we wear for others is like the tip of the illness iceberg and the hidden battles and daily challenges of our conditions are the rest. You have a good knack for giving those who are not in our world a glimpse of life ‘under the surface’ and I this post is a good reminder that underneath every ‘easy’ response are difficult emotions to navigate. Just don’t let them pull you under! xxx

  2. Hi Catherine: Thank you for explaining your feelings so well.
    I absolute love the picture of the four of you! I am putting it in my “save” file!

    Love & hugs,
    Val
    xo

    • Thanks, Val! It’s from when my mom’s family all got together to do family photos for my grandparents’ 50th anniversary…almost 6 years ago now! An oldie but a goodie 🙂

  3. And you have some friends out here in the blogosphere, where the only things we consume are pixels. As I mentioned, I had a girl friend with gastroparesis, so I understand a little bit. She had been a nutritionist and couldn’t work in that field any more because she couldn’t go on talking with people who had so many more choices than she did about what to eat.

  4. I can’t eat much, either, because food makes me exhausted. I understand what you’re saying here about how isolating this is. Thank you for your perspective on things, as always.

  5. Thank you for explaining so well what you feel. You seem to be able to put into words many of the things I feel due to my disablity and the limitations it imposes on my life, yes the grief for what we can’t do never goes away, watching others who can hurts but we also want them to be happy and living a full life. Keep writing Catherine, it is an mportant gift that you have and you are giving so much to others by doing so,

    • Thank you so much, Rosemary. I’m hope that your CRPS is being easy on you lately…but since this is chronic illness we are talking about and there’s a really good chance it’s not, I hope that you find some extra spoons to help you manage!

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