I thought this might be useful as a resource for family / friends.
We spend a lot of time thinking (and talking) about the things we don’t want to hear, the things you shouldn’t say to someone with chronic illness. But, a post on Migraine.com reminded me that we need to spend a little more time on the things that we want others to say. When all we focus on is the negative, that’s all we will get. In order to help those who love us communicate with us better, we have to help them. With that in mind, I want to take the list from Migraine.com and share a list of Things to Say to Someone with Chronic Illness.
- I’m here for you – No matter what, we need to know that those who love us are there for us. We need to know that you aren’t walking away. Words are cheap, so we also need actions to show us that you aren’t going away, and believe me, we will do our best to push you away (thinking it’s for your own good). We hate being around ourselves when we feel bad, so we can’t imagine that anyone else would want to be around us.
- How can I help? – Those of us with chronic illness suck at asking for help. But, that doesn’t mean we don’t want it and need it. We need it a lot, but we won’t ask for it, and we worry that no one wants to give it. We need you to offer it, and keep offering it, and even offer specific help. Don’t stop offering until we take you up on it. Don’t just offer help, give it. If we keep saying we don’t need help, find ways to help anyway. If you live with us, make an effort to do things around the house, cook dinner, run errands. If you don’t live with us, give an ear. Pay attention to the things we complain about needing to do, and see if there’s some way you can help us with those things.
- That must really hurt – On the rare occasion that we do talk about our pain, please let us know that you believe us, that you realize how much pain we must be in. Just that we hurt enough to share it with you means we are hurting a lot. There’s so much pain and so many symptoms that we deal with from day to day to the point that we just stop talking about them. For us to speak up means we are really in pain (and probably means we could really use your help in some way).
- You are so strong / brave – We don’t feel strong, we feel weak. We need those who love us to remind us how strong we are, that it takes a lot of strength and courage to keep fighting day after day when dealing with chronic pain and illness.
- You don’t deserve this – No one deserves chronic pain, but that doesn’t keep us from feeling like we’ve done something to deserve it or didn’t in some way earn it through our bad choices. We need to be reminded that we don’t deserve it, that we deserve so much better. We deserve to be healthy and happy.
You are doing everything you can – We feel guilty enough that we aren’t doing enough. And too often we get unsolicited advice about things we can do to feel better. We need to hear from those who love us that we are doing enough, that we are doing everything we can and that you know it.
Tell me how you feel – It’s difficult for anyone to know what to say in a situation they’ve never dealt with, but sometimes it’s not about what you say, but just that you sit and listen to us. It’s ok to say “I don’t know what to say, but I’m here for you”. Sometimes that’s all we need, we need to know that you are there and willing to listen.
I miss you – Those of us with chronic illness will avoid people (at least for a while) because we don’t think that you want to be around us when we are sick. We need to hear that we are missed, we need to hear that you want to be around us, and that you are there for us when we are ready to be with you. We need you to make that extra effort to remind us that you are there and that we should reach out, too.
How about we pencil these plans in? – When we do feel up to making plans with you, we need you to understand that those plans are always going to be tentative, that we may have to cancel at the last-minute. It helps so much that we know you understand that. When you say it first, it helps us relax and know that it’s not big deal.
- Tell me about your illness… – We worry / feel that no one wants to hear about our illness. We don’t want to bog you down with it, but we do need to talk about it. The only way we will talk about it is if we know you really want to hear. Ask us about our illness, ask us how it feels, ask us how it affects our lives, ask us if we’ve found anything that helps.