Have you ever found yourself in a situation where someone tells you something that renders you speechless. You aren’t sure what your responses should be and inevitably the wrong words tumble out of your mouth faster than a Ferrari at a Grand Prix. Yeah….me too.
I mean, we don’t mean to say the wrong things, but sometimes it just happens. Sometimes we don’t realize we said something wrong. Other times we realize it and try to fix it by digging ourselves into a deeper and deeper hole. Then we obsess over it hours upon hours upon hours because we know that was the wrong thing to say and we feel ridiculous.
Have you ever done this with someone you know that has lupus or another chronic illness? Well have no fear, my dear friends! I know how you can dig yourself out of that hole! Here are 10 things to do for a lupus patient!
- Educate Yourself
- I’m not expecting you to know everything about lupus immediately. I’m not even expecting you to become an expert. (We all know even the doctors don’t know everything!) What I am asking you to do is learn about the disease so you can understand what I can’t say. Understand the Spoon Theory. For a moment, put yourselves in our shoes so you can understand what we’re dealing with each day. Remember, not every lupie is the same so we need you to understand that.
- Check on us
- We won’t always tell you we don’t feel well. In fact, we will hide it as much as we can. So ask us how we’re doing…how we’re really doing. Don’t just ask out of courtesy or salutation (we can see right through that), but check on us because you care to know what is actually going on. Then prepare yourself because even though we may look fine…we may give you an earful about what is really going on.
- Just listen
- We will hurt. We will whine. We will cry. Just because we do it doesn’t mean we want you to fix our problem. It doesn’t even mean we want your advice on how to fix the problem. We just want to let it out like a crazy rooster cockadoodledooing every morning, afternoon, and evening. Sometimes we feel better just being able to be upset for a moment without having to worry that anyone is going to think poorly of us. Then, with time, we will brush ourselves off and carry on because we’re tough like that and that’s what we do.
- Help us accept help
- I’ve already told you how I’m awful with accepting help. I also have learned that I’m not the only one. No one likes to feel weak. No one likes to inconvenience people. No one wants to be less that perfect. So please, one thing you could do is help us learn that it’s okay to accept help. Then when we are too stubborn to figure out that we need help (and we will be because most of us are more stubborn than a toddler that doesn’t want to eat their vegetables)…just help us without giving us a choice. That’s the only way I was able to figure out how much I needed the help.
- Help us when we ask for help
- Just as we need you to teach us to accept help, we need you to try your best to help us when we ask. If I ask for help it’s not because I’m trying to pawn my kids off on you or that I’m too lazy to get school snack that day. It’s because I have no other option. In that moment I’ve been forced to forget my pride, recognize that I’m not perfect, and realize I can’t do this alone. Nothing hurts me more than when I gather the courage to ask for help (which to me is synonymous to admitting weakness) and being absolutely rejected. If you can’t help, that’s fine…but if you can our gratitude is immeasurable.
- Understand and accept our limitations
- I used to joke with a friend that I was given a Ferrari for a body, but a lemon for an engine. I look fine on the outside and as if though I can win race after race, but the truth is…I can barely make a lap. Sometimes when I tell you I can’t do something it doesn’t mean I don’t want to, I just have to plan my life around how much time I have to recover from whatever we do. This goes for every single thing we do. I did it when I planned my son’s birthday party. I recently had to do it again when I decided that I was not able to help coach my son’s little league team, not because I didn’t want to (I really, really did) but because I wouldn’t be able to be outside in the sun that long without getting sick. (Lupus patients are very sensitive to the sun. A hat and good SPF are our best friends year round). So, if we can’t go out with you please realize that in this case it’s not you…it’s us.
- Surprise care packages
- This is a small thing that makes a big difference. It doesn’t have to be anything grand, just something that let’s us know you’re thinking of us. If you know that someone is having a particularly rough flare small things can help so much. Bring over dinner or gift cards for dinner so that’s one less thing on their list to worry about. Give a good book or magazine so they can read something besides their prescriptions side effects list. You could send them a card that will look pretty on their mantle. Realize that we feel very, very isolated and alone while we flare and being reminded that you really do love us lifts our spirits so much.
- Flares feel like a winter that never ends. You know that moment in February where you believe it will never ever warm up again….ever! There will be times that we feel like this is how our life is always going to be. One big. long. flare. Sometimes we don’t believe we’re going to feel our version of normal again. We’re certain of it when ever part of our body hurts and the fatigue has made us dumber than a doorknob. We need you to tell us we’re strong. We need you to tell us we’ll make it through. We need you to tell us that there is no one is better at getting through the difficulties of a flare. Your encouragement will motivate us to keep on fighting through the pain.
- Just be with us
- We’ve talked about the fact that sometimes lupies just can’t do what we want to do. It may make you sad and upset, but you can be certain that it makes us sad and upset as well. We don’t want to miss out on having a good time with you. We want to be with you as much as possible so we would love if you found a way to make that happen. Even if this means we have a night in and watch a good movie, laugh as we play a board game, or talk and eat take out…just be with us. Let us know that we mean enough to you that we don’t have to do something beyond our limits. I can promise we’ve pushed ourselves sometimes so we can not be a downer, but after a while our bodies just won’t let us take another step.
- Don’t define us by our disease
- Don’t talk about us as the “friend/neighbor/wife/mom with lupus.” The word “lupus” simply scares people because it’s something they don’t know. We are ordinary people with ordinary interests living under extraordinary circumstances. Yes, I have a disease that dictates a little more than I’d like, but I can promise that once you get to know me I’m feisty, I’m funny, and I have the more personality than even I know what to do with. I just happen to have lupus. Lupus doesn’t have me.
Is there anything else you would add to this list? Share them with me!