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When Being Sick Is Like Living in the Twilight Zone

Ever see the “Twilight Zone” TV show from the 1950s/’60s? I don’t watch much television, but it’s been one of my favorite shows since I was a kid. It’s spooky and often very profound, and it explores human fears and frailties. Quite often, protagonists find themselves thrust into different dimensions, post-apocalyptic worlds or situations where they quickly discover that all is not as it seems. Another recurring theme is that the protagonist sees or experiences things that his peers do not.

I also love the film “Beetlejuice,” in which a ghostly couple are trapped in their house for 125 years. They can look out the windows and see their bucolic New England town, but if they actually venture out of doors they end up in a bizarre, confusing dimension.

As someone with chronic illness, both of those themes resonate with me. I am walking on the same streets and breathing the same air as my friends and family, but I’m not in the same reality anymore. No, I don’t think I’m a special snowflake — I realize that everyone has their own challenges, and they’re often significant. It isn’t as though everything’s going great for everyone all the time, and I may not know just how difficult someone else’s life really is. All the same, the day-to-day realities I face are often light years apart from those of my healthy friends.

There’s a “Twilight Zone” episode, “Nightmare at 20,000 Feet,” in which William Shatner plays an airplane passenger. When he looks out the window, he’s menaced by an ominous creature who is lurking on the plane’s wing. He attempts to alert his wife and the cabin crew, but nobody believes him, because they can’t see the monster themselves. Similarly, when I attempt to tell others just how much my own gremlins — chronic illnesses — are affecting my world, they can’t see it and aren’t always sure how to respond. I’m experiencing things they don’t always understand.

Most of my friends spend their days at work. I’m usually either resting or attending doctors’ appointments or physical therapy. They have enough energy to keep going most of the time, and when they’re tired they can generally trust that they’ll feel better after resting. I’ve got barely enough fuel in the tank to do one activity and my extreme exhaustion never goes away. They have a couple of doctors. I have 10. They see me when I’m putting my best foot forward and hiding my exhaustion and pain as best I can; they don’t see what’s happening behind the curtain. When I do have enough energy for something fun, it doesn’t always align with what they want to do.

By and large, my friends have been understanding, but I always worry about how often I have to decline their invitations. I have to do what’s best for me, and most of the time my health simply won’t allow me to make another decision… but I don’t like spending most of my time in a parallel universe, watching them all without participating. I throw out all sorts of mixed messages to my loved ones: Invite me to your events, but understand if I need to decline. Don’t underestimate me, but also understand that I may not be able to do everything you can do or may have hard limits or restrictions. See me beyond my illness, but see my illness and understand how it affects me.

Yeah. It’s complicated. It’s a world that none of us know how to navigate until we get there. We’re exploring a vast unknown dimension, and guidance that works for us is thin on the ground. It’s confusing. We constantly wrestle with ourselves, and our illnesses, in deciding what we can and cannot do. Our conditions often throw surprises at us.

I’ve been lucky: even though I’ve lost friendships, like many people with chronic illness, I’ve also been gifted with some absolutely wonderful friends. In a world of illness, doctors, needles and medication, my friends have been an oasis. When I interact with my friends, I’m essentially peeking my head through the door to my parallel universe. I desperately want to keep in touch and continue to be a part of their world, and I jump across from the Fifth Dimension as often as possible, but the connection’s spotty sometimes, the door’s not always open, the monsters living on the airplane wings are scary, and it can often be hard to synch things up.

The friends who have remained with me haven’t had any magic cures. I’m not expecting them. Quite simply: They’ve been patient. They’ve been there. And that’s made all the difference. They understand that while they don’t always know everything about my life in the Fifth Dimension of Chronic Illness, or how to handle it… I might not, either. I’m learning as I go along, and it’s not always going to be easy.

There’s nothing you can do to cure a friend’s chronic illness. There are many things you can do to help them keep their ties with your world. You can be patient, you can be compassionate, and you can be there, without judgment. Keep inviting them to events, even if they need to say no. Offer to help when you can. Listen without feeling the need to try to fix things. Understand that your friend is coping with things that might be well outside of your own range of experience.

We need you to see us and stay with us, even when it’s not the easiest thing to do.

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Lead photo by Thinkstock Images