A response to: “Four Things You Didn’t Know about People with Chronic Illness.”
I’m not going to go so far as to say that I speak for everyone – because for all I know some people have a very different experience than I do. So we’ll just go with a list of things I feel like you should know about ME and my experience.
- ASK ME QUESTIONS! Seriously. I would rather you ask questions and I educate you to the best of my ability about things. It makes me feel like you’re active in the conversation, and I’m not just dumping on you. Have real conversations with me about what’s going on and I’ll try to explain it. I’ll explain why sometimes I’m really tired, why I can’t necessarily go out drinking with you – but I’ll try to go out anyway, why I always have a bottle of water with me, etc. Don’t be afraid to ask questions or back away because you don’t understand what’s happening with me. I would rather talk about it than have you avoid me.
- Plan ahead of time. I love you guys with all of my heart, but it’s so much easier to handle hanging out if we have plans. I know when we’re going to hang out and what we’re going to do, so I know if I should be trying to nap earlier in the day so that I have extra energy if it’s one of the days where I feel like I could fall into the sleep of the dead at any moment. Also, if we plan ahead of time I can make sure that I’ve eaten something ahead of time so that if we go somewhere that I can’t eat much I don’t get hungry. I know, “But we’re going out to dinner,” but I don’t want to tell you we can’t eat somewhere because I don’t have many “safe foods,” there – so you can just cope with the small amount I’m eating while out with you. And if you cancel, I might be sad. Seriously. Chances are that I’ve been getting myself all worked up for this because I feel like a hermit, and now I don’t have plans and I feel lonely. I’ll be completely understanding of whatever your very good reason for bailing is – but I might still be pouting a little on the inside.
- I like to make my own decisions. I love you, honest. And I think it’s SO sweet of you to try to take care of me. But I know if I need to rest or if I can keep going for a while before sitting down. If we’re doing something and you can tell I’m getting fatigued or winded, you can offer to take a break and I’ll let you know if I’m good to go or if I need it. I’ll admit that I’m stubborn and I don’t want to drag you down so chances are I may try to push my limits sometimes, but if you’re offering instead of me asking and I DO need to take a break, then yeah – I’ll be leaning against a wall waiting for my heart to stop pounding. If I’m just checking the tempo of the upcoming songs to decide if I can handle them? Let me decide if I need to take a break or not. You should also let me decide if I’m feeling up to coming out tonight or not. If you say, “Hey, do you want to grab a beer” and my response is, “Well I probably shouldn’t drink, but I can definitely come out,” please don’t turn around and revoke your invitation because you decided I need to rest.
- Food is kindof a big deal. Chances are if I know the restaurant I have something I’ll order every time I’m there. Don’t tease about how I’m picky – give me credit for being smart enough to have figured out what I can handle, and not foolish enough to take a risk on something that might set my poor spiceless stomach off. If it’s a new restaurant – give me plenty of notice. I’ll stare down that menu and figure out what I can eat and what I need to ask them to do specially for me so that I can try to enjoy myself. Oh, and if I salt something that’s already salted? Just go with it – I’m trying to behave myself for a change.
- I feel guilty about the way my illness affects you. Even if it’s just that I might bitch (even if I’m trying to be lighthearted about it) I’ll worry later that I complained too much. If we’re in a large group at an amusement park and I can only take three people with me with the line skip pass that I caved and got as a precautionary measure about passing out, I’ll feel really guilty about the fact that it feels like I’m splitting the group and I can only take so many people with me. If I ever actually ASK to sit down right away or eat soon (which means we should probably do it like – five minutes ago), we should do it. But you can bet I feel terrible that I have to ask that. And I’ll probably try to be easy going about restaurants whenever possible – even if that means just eating churros while everyone else is enjoying their Taco Bell “food.” So on the off chance I ever do just have a breakdown in front of you, have to ask if we can take a break, etc – believe me, I’m already feeling guilty. Please just go along with it and if at all possible make me feel like it’s okay.