The Debilitating Loneliness of Chronic Illness
Loneliness is something that has only gotten worse with having a body that doesn’t work the way anyone expect it to. The further I’ve come along on this journey the more confusing it has gotten due to reacting so strongly to things that are meant to heal, not harm. With time, it’s been harder and harder to keep connections and most people don’t understand what it is that I am going through.
I’ve learned that you are not just dealing with illness. You’re also navigating isolation too.
It’s been an entire lifetime spent trying to explain my issues to my family, friends, and even doctors. I’ve generally been met with blank stares, well-meaning advice, or general disbelief. “Just push through,” “Relax,” “Try this supplement,” “Have you tried meditating more?”
My body doesn’t work the same way theirs does.
It’s Better To Stay Quiet About it All
I am at a place where I don’t expect people to fully get it. How could they? And no one should have to. But that doesn’t make the loneliness any less.
As time has gone on, it’s gotten harder to talk to others about what I’m going through so I generally stay quiet about it, especially to my family. I have amazing friends, but it’s hard to always feel like the one bringing up the endless “I’m sick” conversation every single time we speak. There’s a deep discomfort in constantly having to explain why things are hard. There is also the guilt for needing to say it out loud, yet again…maybe for the 4th or 15th time… I honestly haven’t even felt like I’ve been a very good friend to others.
People want to help. It’s human. We hear someone suffering and instinctively reach for solutions. I’ve done it too. In the start of al of this, I was very open and accepting of any and all advice. Unfortunately, with everything not working as I hoped, being problem-solved is now just as dysregulating as the illness itself. It makes everything more frustrating. And it has created a lot more isolation. It’s been hard figuring out how to navigate all of this. I really don’t want to be a burden to anyone or bring anyone down.
It’s not easy being out in the world. It’s hard being social, to pretend I’m okay when I’m not. And it’s not easy to admit that, sometimes, even well-intentioned support can feel like pressure. It’s all so confusing. I’ve been carrying a lot of things in my body for a long time; traumas, unprocessed sadness, unprocessed guilt and shame. It’s all in my body, waiting to be processed.
What I’ve Learned
I think one of the things that I’m learning that I need is understanding. I am also learning the need for processing and Prescence. There have been noticeable shifts with having support from a chronic illness coach. There is still just so much left to work through and to process. I am at a point now in this process where things are starting to come out, but the more that does, the more dysregulated I become. I can’t go back to the old ways of doing things. But…it’s a lonely road. There’s still a lot more understanding to be had and most of that does have to happen in solitude.
This kind of chronic loneliness isn’t just emotional, it’s something that shows up physically. It lives in the body. It shapes how I breathe, how I sleep, how I trust. I know I’m not the only one navigating this strange in-between space of needing others while not always being understood by them. I know I’m not the only one struggling with knowing what is needed for their healing or progress.
So, if you’re someone who’s also living in that space, just know: what you are going through is real. Your need for gentleness is valid. It’s all very understandable and my heart goes out to you.
The Strange Reality of Feeling Worse When I Rest – Astra Speaks
