“Take some time this weekend to relax,” a friend of mine told me last month after I said I was going through a bad lupus flare. They obviously meant well, and they genuinely felt they were being supportive and looking out for me when they gave this advice. For so many of my friends, they can only imagine a flare up is something like having the flu. And in many ways, they are right… but it’s a flu that lasts for weeks and weeks, coupled with daily pain, medication side effects, lab work, doctor appointments, depression and anxiety, and a debilitating brain fog. I just replied, “Thanks, I will. I hope you have a great weekend!”
I could have said, “Thanks for the reminder, I was really tempted to go on a 10 mile hike instead, but maybe you’ve got the right idea and I should stay in bed.”
Or I could have said, “Do you really think I have a choice here? I’ll be lucky if I can make my own meals and form coherent sentences.”
But snark doesn’t help, and I know much of what people say to me about my illness is born out of love and support. I realize they are truly trying to help and I deeply appreciate that. They just don’t get it, and that’s why there are a ton of blog posts out there about what NOT to say to people with chronic illnesses/ invisible illnesses. The phrase, “But you don’t look sick!” is a phrase we all know well for a reason.
But I think it can feel really confrontational and awkward to share a “don’t say this to me” list with family and friends. I’m also not a fan of telling people what they “shouldn’t do”, so I came up with a list of things we can share with our loved ones that focuses on things we might like to hear instead.
“It’s so great to see you / hear from you”
For so many of us, living with a chronic illness often means our social life has plummeted. Rather than commenting on that (“where have you been?”) it feels really amazing to hear that you are excited to see me or hear from me. It also validates my efforts to get up, get dressed, and get out or to mentally prepare myself for a “catch-up” conversation.
“I’ve been thinking about you”
This is one of my favorites because even if I’m not at social gatherings or I’ve dropped out of chats and social media, I know you still care about me. Sometimes it can bring up some sad feelings about how out of touch I am these days, but I try to focus on the positive side of this comment and feel grateful that I am in your thoughts.
“I’d love your advice”
My opinions are still important? I can’t tell you how amazing this feels! Right now I may be feeling a bit isolated and lost. I can barely understand my medication side effects or treatment options and I feel overwhelmed. The fact that you think I still have important opinions about your recent decorating project or dog training approaches can really lift my mood! (Just try not to overwhelm me too much here – I can’t solve all the world’s problems! :))
“I want to learn more about what you’re going through”
If you’re sincere and you’re ready to listen without giving unsolicited advice, I’d love to tell you a bit about how my illness affects me. The best thing you can do is empathize without trying to “fix” it for me. It doesn’t actually help to hear how your cousin was “cured” by herbal supplements or how icing my knees will get me “out of bed in no time”. If you’re ready to learn and not to teach (or preach), I am ready to share.
“I’m so proud of you”
Sometimes the struggle I face and the treatments I endure are so overwhelming that I just need some acknowledgement that you see the work I am doing. This simple praise is enough to keep me going and validates that someone else recognizes that I’m not giving up!
“I love you just the way you are”
I’ve lost so much of my “former self” and I keenly feel that loss nearly every single day. I’ve got real limitations that I am struggling to adjust to and I work very hard to put on a brave face — or even fake like I’m much healthier than I feel. If you can see me and accept me for who I am now, the weight of all that becomes much easier to bear. I desperately want to feel like I can be my true self around those I love.
“I wish I could make this better for you”
Empathy is the act of walking in someone’s shoes and trying to understand how they feel. When you say you wish you could take away my pain, or magically give me more energy, or remove obstacles from my path, I can feel your empathy and love. I feel like you truly care.
“I’m here for you”
Simply telling me that you are available to me is comforting. It’s also going to help me pick up the phone and call you if I need to talk.
“I’m stopping by the store; what can I pick up for you?”
So many people offer sincere help with phrases like, “what can I do to help?” or “just call me if you need anything at all” but what they may not realize is this open-ended offer can feel really overwhelming to the person who needs help. A lot of guilt and uncertainty prevents us from taking you up on it. But, if you offer a clear and simple way of helping, it’s easier to say yes and feel like we are less of a burden.
“How did your doctor appointment go today?”
Remembering that I had a doctor appointment shows you care. No matter how often I go, and no matter how great of a relationship I have with my doctor, there is always a bit of anxiety over what she might say. Will I need more tests? Was my lab work abnormal again? Does she recommend a different treatment that might mean weeks of uncomfortable adjustment?
If you’re asking me how it went, you’re giving me an opportunity to process my feelings about it, and you might learn a little more about my illness and what I face. Win win! And if I don’t feel like talking about it, I still walk away knowing you care about my treatment.
Each of these statements or questions really help me feel supported and are great ways to start meaningful conversations. Try to offer them without judgement, with an open mind and heart, and with the intention of listening without “fixing” things. I know you won’t always “get it” but it means the world that you’re willing to try.
