Life and Chronic Illness

It’s not a secret that chronic illness changes your life, that it changes you. What is mysterious to people is the specifics of just how that happens, and just what changes. For all the talk about Chiari, in my life, and all the “awareness,” there’s still a lot of confusion about what it means to be sick, how it has changed every aspect of our lives.


Our lives are ruled by fear. We know that, at any time, I can get sick. I can get a headache that might send me to the hospital. I can get knocked down, and crippled by pain. When this happens, it doesn’t matter what’s already on the schedule, what’s been planed for months; I can’t do it. There is no, “but it’s important, so can’t you pull together for just a few minutes.” No, I can’t; it’s not possible. I can’t even use the bathroom alone, when a Chiari headache strikes. So, no matter how badly I want to go to my son’s school play, my husband’s promotion ceremony, or even sit at the dinner table, I can’t.

This means that I miss stuff. It also means I miss things, preemptively. We have a relatively exciting family event coming up, and I’m not going. I’m not going because we’re afraid. We’re afraid that I’ll get sick and ruin everything. We’re afraid that I’ll get sick and draw attention away from, what should be, a joyous time. We’re afraid that, to avoid getting sick, too much attention would have to be paid to accommodating me: I need a nap, a rest, a snack. We’re afraid that the stress of being afraid of getting sick, will make it happen: a self-fulfilling prophecy.

What’s more, we’re afraid of being afraid. We’re afraid of the inevitable judgment that comes from family (or friends), when I’m sick, again. Ugh. Rachel. Again. I’d be annoyed with me too. But, we’re also afraid of the judgment that comes from protecting ourselves from such dilemmas. Ugh. She stayed home? She’s missing this?

We can’t win for losing, can we?  


Notice that all of that fear was a “we” problem. Chronic illness isn’t just me. I’m the sick one, but Bryon is the one who cares for me. Collin misses out on promised trips to museums, or parks; and, he misses his mother, when she can’t be there. It’s a “we” problem, to have a chronically sick person, in the family.

That means that “we” make decisions about how to best care for “me.” I don’t expect the world to stop when I’m in a flare; but, I do have to stop, even though I don’t want to. We have learned how to keep the world turning around me, while simultaneously caring for me. We’ve learned that part of that means protecting me from harm, and keeping me safe from flares, even if our decisions are not always popular. We’ve learned that “we” are more important than “they,” because the “me” in this equation is pretty important to the three of us.

My "we."

My "we."

Sick and Well

I look great, lately, if I do say so myself. I’m up and dressed, everyday. I can exercise most days. I paint. I write. I’m even making a decent living, right now, as a freelancer. I do things. If you didn’t know that I was sick, you would think I was a regular, healthy person. This is confusing for people. I look fine, right?

I am fine, for now. I’m also only fine, in comparison to not being dead, or not being in the hospital. I’m not fine. I can give you a laundry list of things I can no longer do, either because I’m not allowed to, or because I just can’t. I almost passed out last night, because I’d been lying on the couch with my head a little below my heart. Thanks to weird CSF, and blood-flow in Chiari brains, I crumpled like a leaf, in Bryon’s arms, on our way to bed.

No matter how fine I ever look, or become, or heal-to-be, I’ll always be a more fragile version of myself. I’ll always have to make decisions that appropriately protect my easily-broken body. It’s like going on a hike, and choosing your steps carefully, so you don’t fall. My life is a constant battle of choosing carefully, so that I remain in a steady state of fine, and hopefully, better.

It’s very easy to see a chronically ill person, out and about, doing well, and then question why they can’t do activity X, Y or X, when asked. Trust them. They know their limits. The worst thing you can do to a sick person is question that they are sick, and then make them apologize for living when they are well.

I "helped" clean out the garage yesterday. See, I'm "well." I sat in a lawn chair and talked to Bryon, while he did ALL the work. Rachel of five years ago would've cleaned out the garage herself, or been in the thick of it too. No longer.

I "helped" clean out the garage yesterday. See, I'm "well." I sat in a lawn chair and talked to Bryon, while he did ALL the work. Rachel of five years ago would've cleaned out the garage herself, or been in the thick of it too. No longer.

We’ve been dealing with a lot of unnecessary family drama, lately. It made me ask Collin, this morning, if he could change one thing about me, what would it be; he said: I’d make your brain better. I didn’t choose to be sick. If I could erase it tomorrow, I would, despite all the life-lessons that Chiari has given me. But, because my boy thought only to say that he’d fix my brain, I think that I’m doing okay on everything else. The “we,” is strong in our family, and I’m happy that I have it to support the “me.”