What to Say to People With Chronic Illness Instead of 'How Are You?'
First of all, thank you. I am not unappreciative of your attempt to show sympathy. I am highly aware of the abundance of crass people in the world today. So please, trust me when I say I thank you for your kindness.
However, the chronic illness epidemic has made the classic, “How are you?” a bit problematic. The truth is, I’m terrible. Really, really bad. I worry daily, vomit hourly and constantly have to search for something that makes it all worth it. I spend hundreds of dollars a month on medical care. I cancel plans with my friends more than I go through with them. I am highly familiar with opiate laws in my state. My biggest fear is that my pain will get to its highest point – the point it gets to every few months, when shots of morphine and oxycodone in the ER can’t even stop it – and never come down.
I am never, ever free of pain. Think about that. Think about the times when you had a cold and someone asked you the question. What was the first thing you said? I have a cold. I had to call out of work. I can’t taste food. I’m unable to sleep. How did they respond? They gave you some sympathy and some remedies and you moved to a different topic, and your cold was likely gone in a few days.
Imagine having a cold all the time. One that wasn’t ever expected to improve. It would be somewhat manageable some days, but for the most part you would never stop suffering from and expending yourself and your finances treating this thing you would never get better from. Even worse, you’re young. You cannot see the future that may have been so bright for you before your illness. When you think about the next 10 years, all you can think of is how you will have to accommodate this illness.
You are so sick of it, so consumed by it, you want nothing more than a moment away from it. Physically, that is impossible. But you try so hard to steal moments where you are emotionally and mentally immersed in something else. You try to act normal with your friends. Talk about the good things in life. Laugh until you cry. Give advice. Be positive. But you still have to leave the party. Leave church. Leave your few hours of normalcy. And go home to your reality. How are you? You are sick, and you can’t change that.
The reality is, I’m sick and I can’t change that. I rarely want to talk about it. So when you ask me how I am, I feel impelled to lie. I don’t want to tell you I cried for two hours straight before I got here. I don’t want to talk about how many pills I had to take just to be able to shower and get dressed. I don’t want to talk about the battle I’m in with the insurance company for an experimental treatment I’ve been putting all of my hope in for the past two months. I want to be normal. I want you to tell me how you’re dreading work on Monday. I want to hear about the funny thing your mom did yesterday. I don’t want to be reminded of my problems and I definitely don’t want you to be burdened by them.
“But Jade,” you protest, “this is America, and saying ‘How are you?’ is just part of having good manners! Plus, don’t you spoonies want us to show you some support?”
I know. You’re right. And I don’t expect people to stop asking the question. I myself say it to my healthy friends all the time! However, when you know I am struggling with something chronic (defined by the U.S. National Center for Health Statistics as persisting for a long time; generally cannot be prevented by vaccines or cured by medication, nor does it just disappear), please, try to avoid asking this question in casual conversation, when neither of us want to sit around being sad. Let’s assume I’m doing terrible. But I’m talking with you because I’m still fighting. I’m still here and I need your support. Today, when I see you from across the room and excitedly come close for a hug, let’s assume that if I want to talk about my problems, I will let you know.
Today, someone who I love texted me this message: “Hi. I care about you.” She followed up with, “This is my replacement for ‘how are you?'” We spent the past weekend together at a huge religious seminar. Three days, eight hours each. It was truly beautiful. I came back with a full and renewed heart, but I fought my own body to get there and trust me, it started fighting back the minute I left. She knows for sure that I am lying in bed trying to recuperate. She knows the answer to the question. So she finds something better to say.
Tell your loved one you care about them. Tell them you love them. Ask them if they need anything. Tell them you are there for them. Then talk about something fun. I don’t want you to ignore my illness, but I don’t want to cry about it all day, either.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via Stockbyte.