Context: I wrote this column a few months ago while getting my adhesion surgery. I’ve had a few hospitalizations since then where I did have friends show up (along with family and family-friends) Still, I think the story of that first lonely hospitalization was one other patients could relate to so I put it out there. Hope it helps. PS—I’m out of my port surgery and it went well! Just taking a few days to recover.
Here’s what I wish I could tell my friends:
I have every excuse in the world for you not being there.
I’m sick too often. I’m sick and I’m too quiet about it. I’m sick and I don’t make a “big deal” out of being in the hospital. I’m sick, but my husband and mom will be there for me. I’m sick but this is just part of my life. And you don’t have to hold my hand through every single day of it.
That isn’t what friends are for.
At least, that’s what I told myself during a particularly long hospital stay, after a very grueling surgery. I waited for my friends to call or visit—hell, I would have been moved if they’d even texted.
But there was radio silence.
I was stunned, but told myself: I’m okay. I don’t need their support. They have busy lives. It’s a busy week. I can’t just expect them to drop everything and acknowledge that I’m struggling a little bit out here.
I’m very careful to not step over that line. I don’t want to be that girl who always and only talks about her disease. Which, with most of my health-writing career based on it, is hard not to be. But when I’m with my friends I have an open ear and I try hard to not make the whole conversation about how this huge monster of a disease sometimes clouds my entire universe.
I had to work this out in my head. Did they not notice? Or did they just not care that I was in the hospital having major surgery? Were they uncomfortable checking in on me or had too much happening during that week or what? What?
In the end, all that really mattered was that by the time I was home and well-rested enough to think about it, all I could think was wow, I have so many meaningless friendships.
I was hurt. I didn’t want to get angry, to yell at them, to be passive aggressive. I just wanted some space to digest the idea that people who I had hung out with for years just weren’t as close to me as I thought they were.
I turned to my sister who’d recently gone through something similar after her fiancé was diagnosed with pancreatic cancer. Some of their friends just seemed to disappear in the moment. They didn’t reach out at all. It was baffling. She remembered feeling like she was speaking to them in another language. They would change the subject.
You can’t force someone to care, she said to me. You can’t shake someone by the shoulders until some nugget of knowledge and empathy comes tumbling out their mouths. You can’t will someone to show up in the surgical waiting room or be there by your bedside when you wake up in the hospital. You can’t ask them to say the right thing or stand beside you silently until the worst of it is over.
There are moments in chronic illness that are unspeakably lonely. Really, unspeakably—like no one ever talks about them. The moments where you’re shifting between the decision of whether or not to go out for the night but just aren’t sure your body is going to let you. Or how you want to be the one to get in your car in the middle of the night and bring the ice cream to a friend whose boyfriend has just broken up with her—but you can’t, because you have no more energy from the day. All you can do is pick up the phone and hope it’s enough. No one talks about that moment after an unsettling doctor’s appointment where you’re crying in your car and you wish someone was there next to you, making you laugh.
I don’t have the answers. Give your friends the benefit of the doubt? Don’t throw the baby out with the bathwater? Whittle down the list of people in your life to the ones who would show up to ask if this was a regular Tuesday crisis or a major medical meltdown? (And would slow down just long enough to check on you with either one, either way?)
All I know is that with rare diseases come the common need for strong friendships. There’s a quote from Brene Brown that reminds me what I’m looking for:
“I’m looking for what I call my ‘move the body’ friends. I’m looking for the folks who are going to show up and wade through the deep with me.”
While the water may never be shallow in a life with chronic illness, I know there must be people who strap on their boots and set out to swim. I’m going to be one of them to someone else and I know someday I’ll look around me and feel the aid of friends who will be there to move me along.
Because even if you’ve been swimming these waters forever, it’s better not to swim them alone.