Keeping Friendships When You Have a Chronic Illness
“Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing.” — Leslie Jamison “Empathy Exams”
I’m chronically ill. I have healthy friends. This is a problem sometimes. I’ve struggled to describe my situation to them in a way that wouldn’t make them stop seeing me as a person. Which is ironic, given that I’m a writer. I wasn’t sure how to describe how food can make my insides feel like lava, how dizzying the side effects of pills can be, the heaviness of fatigue, the slimy feeling of my hair after not showering for weeks, the smell of an alive body decaying. I don’t want to scare my friends; I don’t want them to be afraid of me.
Just be there for me when I don’t feel good.
Don’t make me feel even worse than I already do.
Invisible illnesses are hard to explain. Like most things, people need to see it to believe it. So when I tell people I’m sick they stare at me. Searching for flushed skin, red cheeks and sweating. They wait to see me hunched over, to see me throw up, to see some sort of mark on my body. Sometimes they get all that, sometimes they will even see me collapse. But most of the time, I look fine. I have a high pain tolerance; I’m used to feeling like I just ate cement for lunch. So I look fine.
Please try to see me as who I am, as a person.
Please stop searching my face for symptoms.
Christine Miserandino has Lupus, and struggled with the distance between the healthy and the sick, so she created “The Spoon Theory.” Miserandino and her friend were at a restaurant eating and she had to take some pills. Her friend was watching her and asked what it was like to be sick. Miserandino was surprised because her friend was her roommate and basically a witness to all her struggles. So while trying to figure out how to explain, she looked around the table and grabbed spoons from all the other tables.
“The Spoon Theory” is about choices. At times, healthy people “seem” to have unlimited energy compared to the chronically ill. Miserandino wanted something physical, the spoons, to be taken away so her healthy friend would understand that everything cost something for her. Getting out of bed costs her a spoon. Showering, a spoon. Getting dressed, a spoon. Making food, a spoon. By the end of their pretend day Miserandino’s friend was left with one spoon, and she had to use it to make dinner but couldn’t do dishes. Her friend cried, having no idea how difficult it was for Miserandino.
Don’t tell me it’s going to be okay when I’m upset. Let me be upset.
Please stop telling me about every miracle cure you read or heard about. I’ve probably heard of them too, and tried them without success.
My old high school friends couldn’t understand how hard everything suddenly was and how I could change so quickly. It was easy to say when they didn’t see me for months on end. Suddenly their curvy friend was so thin her bones showed in the shadows of her skin. Suddenly I didn’t want to dress in tight clothes and try to snag a guy. Suddenly I was tired all the time. I was doing work all the time. I was no fun. They told me I changed too much. They didn’t know who I was, and left me. I wanted to tell them they were right. Everything had changed for me. The old me was stolen as soon as I found out I couldn’t eat. I was broken now, trying to build myself up again. I didn’t know who I was either.
Find a way to enjoy staying with me in my house and watching Netflix.
Find a way to discover that you don’t have to go out all the time to have fun.
Don’t not invite me to things because you assume I’ll cancel. That’s makes me feel more left out than I already do. I’m always more upset about canceling than you probably are.
I have cried so much I’ve gotten dehydrated. I spent a lot of time alone in my room in the dark. My mother would ask me over and over again: What can I do? How can I help? Tell me what to say. I would usually cry harder and tell her I didn’t know. I didn’t know how to help myself. It seemed like everyone around me was either ignoring me or walking on eggshells. Everyone seemed so far away. I mean, even my own mother didn’t know how to talk to me. I wished I could put my emotions in easy to understand lists. I wish I had a standard response when asked, “How can I help?” I wished I didn’t tear up when my mother asked how I was feeling. It was always how I was feeling not how I’m doing. It was always about my illness, not the repercussions it caused.
You can tell me about the good things in your life. I want to celebrate with you.
Don’t be like my high school “friends” who spread a rumor I had died.
The saddest thing was no one ever came to my house to find out if I really died.
It sucks to be young and unhealthy. I feel so isolated from everyone else, both physically and mentally. I can’t go drinking with friends, or go on hikes, or go on cross-country trips. I have a different mentality than my healthy friends. I tend to go a lot slower than they do. I’m OK where I am right now; I don’t have a huge urge to see the world. I would rather get healthy first. In high school, I spent a lot of time alone because I matured faster than all my peers. They were worried about dates; I was worried about hospital bills. They spend hundreds of dollars on Prom; I spent Prom night watching movies. I figured that I didn’t want to waste money to spend time with people I didn’t like. People laughed me off and called me a free spirit. They cared about how their outside looked, I cared about what was going on inside of me.
Don’t be afraid to tell me about your day-to-day problems. I can’t do much so listening makes me feel useful.
Don’t make me feel guilty because my mere presence makes your problems seem insignificant to you.
I still struggle with connecting to my friends sometimes. I don’t want to be a burden or even worse, be seen as just a sick person. I don’t want to lose my identity to my illness again. It’s already happened once and it was terrifying. The longer I have a friend, the easier it becomes to share. I remember one day busting through my friend Mariah’s door because a doctor told me I wasn’t “really sick.” I was so distraught I couldn’t think and I didn’t want to see my parents’ disappointed faces. I remember crying and then stopping and crying again as I looked at Mariah’s rounded belly. I remember apologizing because this is probably the worst thing for her baby to hear — a grown woman cursing doctors.
She just smiled and rubbed her belly and said, “This is who you are, the good and the bad, why wouldn’t I want him to hear this?” Then she hugged me and I made a joke about being good practice for her mommy skills.
It took a while but now I can make new friends like Rene, who may not know everything but she knows enough. She has a great attitude of casual and concerned when it comes to me. She makes plans with me like I’m a healthy normal person, but already knows I may have to cancel and doesn’t mind. She listens to me yell about doctors, but won’t push me for more details. She is just there for me as a friend, like a healthy person’s friend. Sometimes I don’t want to tell her anything because I like that she makes me feel normal.
Send a check-in message every once in a while.
Please don’t forget me.
Invisible illnesses cause a rift between the sick and the healthy. I even felt it with my own mother until she got really bad consistent back pain. She was suddenly so incredibly limited. I had to help her sit on the couch and was trying to get the ice pack in the right spot when she looked up at me and said, “I always knew you were sick, I never doubted your suffering. But while I understood it then, I truly get it now.”
Even though I’m sad about my mother’s pain, I find what she said interesting.
She understood, but now she “gets” it. It goes back to “The Spoon Theory”– something physical needs to be taken away to understand chronic illness. We often feel a loss, a loss of energy, a loss at unlimited possibilities, a loss of freedom and sometimes a loss of ourselves. So yes, there are wrong things to say, but I know everyone is trying to help.
There are things I wish people would or wouldn’t say, but it shouldn’t stop anyone from trying. When you stop trying, I feel more distant and alone.
Don’t expect me to get better quickly.
Don’t get mad when I don’t.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.