So tonight, I had a lovely evening with my mother and one of my brothers. We went to watch Wonder Woman at a theatre, which was kind of dangerous for myself.
See, I can’t eat food right now. At least, not whole food. I’m on a liquid only diet until further notice. On top of that, my Crohn’s puts popcorn squarely on the “absolute no-no” list, a list that doesn’t change depending on how my stomach is doing at any given moment. I simply cannot have corn in any form in any amount. It sucks.
The problem is that my family loves popcorn. A trip to the theatre without popcorn is not a trip to the theatre. I myself would eat a whole cubic foot of popcorn and still want more every single night. I know, it’s insane. But I’m trying to illustrate just how much I and my family love popcorn. And that’s a true story about the cubic foot thing.
Anyway. I was kind of hoping my family would either forgo the popcorn in support of my situation, or at least not make a big guys over it. They ended up getting popcorn, which I was fine with, and bought me some sorbet. It was lovely. That was all good, all fine. It happened and it was what I expected would happen and we were all happy.
Then, in the way home, they talked about hitting a McDonald’s for hamburgers. But then they were like, “no, we shouldn’t go there since Matthew can’t eat.”
They decided to avoid getting McDonald’s so I wouldn’t feel bad about not being able to eat…without asking me!
Annndddd they did that after eating popcorn in front of me, something that I love, then decided to avoid McDonald’s, something that I don’t like. It’s just like, come on guys! If you’re gonna “make sacrifices” by avoiding food for me, then apply it across the board, please. I know it’s popcorn, but you can eat it whenever you want and I can’t. If you’re so concerned about not making me feel bad, you can get popcorn when I’m not around, like you were planning to do with the burgers!
But you know what? That’s not my true complaint here, though it is a source of some frustration. There’s another point here that is really a big deal for me, and I believe that it’s a big deal for anyone who is sick or ill. I’m talking about assumptions. Yes, assumptions.
They can be well intended, and sometimes even helpful, but making an assumption can make a situation that I don’t have control over seem even worse because now someone else is taking more control away even though that isn’t their goal.
Allow me to back up a bit here. My family made the assumption that I wouldn’t want to be around other people eating food that I couldn’t eat, and that’s really nice and thoughtful that they realised that potential situation on my behalf. It’s really kind. But then they made a decision to avoid the food in a discussion out loud in front of me, but without my involvement.
The lesson here is that I would prefer to be asked or included in that decision making. I may or may not be fine being around others who can eat food! You don’t know until you ask. Sure, I had just expressed my sadness about not being able to eat, but that doesn’t mean I can’t be around others eating, especially if it’s McDonald’s. My feelings are situationally dependant!
If they wanted to eat, I’m fine with that. If it’s really a big deal that they don’t do that in front of me, then let’s come up with a plan together. I don’t want to stop them from eating, but I don’t want to feel left out. And I felt left out. There was no need for that.
The point of my telling you this isn’t to berate my family and complain about them and what happened. I explained my feelings to them and we laughed about the situation in the end, it was quite nice. I’m telling you this because I want more people to know that making decisions and assumptions on behalf of people who have a disease can feel quite bad for that person. They already have decisions made for them every day and live with frustrating situations they can’t change. Show you care by asking, listening, and learning how you can help. Include them in decisions. Don’t alienate them by dancing around a subject and trying not to hurt them. Just be direct and open. And if you don’t want to be insensitive, it’s okay to ask. In fact, it’s better to ask instead of either making an assumption or not talking about it and creating a taboo.
It’s never insensitive to ask, especially if you’re trying to be helpful and respectful.