The Loneliness That Comes From Being Chronically Ill

Being chronically ill is one of the most isolating experiences I’ve ever had. I feel alone in this battle constantly.

I’ve heard chronic illness equated to falling down the rabbit hole before, which I feel is an apt description. It turns your world upside-down. I often feel as if I live in The Matrix, or on some other plane of existence.

I just don’t understand people anymore. I feel so alone when I have to interact with almost anybody. They just have no idea what my reality is like and they don’t often come close to grasping it even when I explain. Our worlds overlap, we can see each other, even talk with each other, but it’s never really…right. It never clicks. Which isn’t their fault, because I don’t know that I could’ve really understood before becoming sick myself. But it doesn’t make it any less isolating for me.

I’m not a part of their world anymore, to incorporate some Disney movie magic, which I try to do as often as possible when I write and in daily life (“Part of Your World” is a song from The Little Mermaid). But in all seriousness, that’s how it feels. When I’m with healthy people, I’m constantly reminded of all the things I can’t do. My physical reality and theirs are two very different things. They have no notion of the pain I feel every minute of every day that causes the limitations I have that they also don’t understand. And words are just so lackluster when it comes to attempting to describe the horror of being sick every minute of your life.

And it’s not only isolating for me, the other people start to pull away and isolate themselves from me as well. I hear from people less and less, until they never contact me anymore. What am I supposed to do to prevent that?

It’s so difficult because none of it is my fault, either. I didn’t ask for this. It’s not my fault that they don’t understand more and I can’t explain in a better way to help. And I know it’s not their fault, either. Which is what makes it such a desolate situation. I truly believe there’s a fundamental gap in experience that can’t be closed even by the best of explanations; you have to experience the pain yourself, and you have to experience it non-stop, for years on end, to really “get it.”

It’s not just being around other people causing the feeling of isolation, either. The pain itself feeds into the loneliness a great deal. Pain is a tricky, sneaky, conniving little brat. It whispers horrible things in your ear while it tears at your bones. “Nobody wants you,” “there’s no reason to try leaving the house – nobody cares if you’re there,” “who would want somebody who can’t do anything anyways.” It cuts you off at the knees (sometimes literally) before you can even begin trying to alleviate the loneliness. It makes you feel as if there’s no reason to try anymore and that you might as well just get used to the idea of being alone forever.

When I think about it, when it comes down to it, I really am alone in experiencing the full horror of this war. I’m the only one who feels the pain. I’m the one who is being called crazy. I’m the one who ends up alone at night – alone again with the pain. At the end of the day, that’s what I’m left with.

At least that’s what it seems at times. And to a degree that’s true. I will always be the only one directly experiencing the totality of the physical pain and feeling the mental anguish caused by the pain and its consequences. But that’s not all I have.

The pain isn’t all that’s left with me at the end of the day. I have solidarity from my fellow warriors (and from my family, of course). Solidarity is about unity from commonality. We all have this loneliness in common, unfortunately. Even though loneliness is, by definition, exclusive, we can find unity in knowing we’ve all felt excluded because of being chronically ill. We may not understand each other’s pain exactly, because every case, every person, is unique. But I’m still here because I know there are people out there who really do understand the anguish – maybe not the actual physical experience – but the loneliness, the isolation, the fear, the mourning, all the consequences of what stems from the physical deterioration.

I know there are others out there, maybe even you reading this, who understand the aching loneliness that being chronically ill causes, the isolation chamber it puts you in without your consent, and who understand my fear of being alone, and my shame. Of course, feeling a sense of unity in something so difficult is bittersweet. I hate knowing other people struggle like I do. But if we must struggle, I’d rather we stay as united as possible, even if it’s something so ugly bringing us together.

Being armed with this knowledge, knowing I have so many incredible warriors standing beside me, gives me the courage to ignore what the pain says. It gives me the strength to continue trying to connect with people, even if there are fundamental differences between us. That’s what keeps life interesting, right? Our differences. It’s not easy. But I feel like our stories are important and need to be shared. And it’s not even just that so much as that we’re all important human beings who deserve to be valued and not feel so lonely.

I hope you know you’re never truly alone in your battle.

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