Invisible Illness: A Journal Entry

8/23/2016

Today my friend Amila came over to visit and help me around the house. She was one of the first friends I’ve seen since my crisis this summer—I kept them all at bay. Now I’m stronger, but this morning it occurred to me that by refusing to see them before now, I may have missed out on something important.

When Amila pulled up, I was standing in the driveway, dressed in slacks and a sweater, grinning and directing her car to the side of my own. I looked normal, I knew. A few pounds underweight, but my clothes hid it. I was upright; the color had returned to my cheeks; I wore jewelry and my hair was pulled back.

I felt almost guilty. Amila was here to help me, but I didn’t look like I needed much help. She, and everyone else, had been fretting about me all summer. Whenever something serious happens, like my energy failing and sending me to bed for hours in the middle of the day, I feel a bit of relief, validation: Oh yeah—I’m not making this up, I’m not just looking for attention, this is real. But when I look and act normal, I wonder if people will be a little disappointed: Katie’s actually doing pretty well; she’s not as sick as I thought. Maybe they’ll feel silly for sending me their cards and flowers and emails. I don’t want to disappoint them.

I said some of this to Amila as we sat at the kitchen table over lunch.

“Have you heard the term ‘invisible illness’?” I asked her. “People only see me when I’m healthy, and I don’t let people see me when I’m sick. That means most people don’t ever really understand how sick I get—it just looks like I’m healthy all the time.”

Out of sight, out of mind.

I explained why I didn’t want visitors in the hospital. It was a matter of timing. I couldn’t figure out how to time potential visitors to the times when I could have handled them. Often I was tired, napping for hours, especially in the afternoons. Often I was in pain, needing morphine or at least Norco, or needing to lie clutching a heat pad to my belly while Ron distracted me by reading Harry Potter. Then there were my many trips to the bathroom, which added an embarrassing element to the idea of guests.

“I really only ever became comfortable with Mom and Ron being in the room when I was in the bathroom,” I confessed. “Everyone else, even my sister, I would kick out.”

So between all those circumstances, it was hard to imagine receiving a guest, a friend who would have driven for 30 to 40 minutes to see me. They would come in expecting some poignant reunion, the ability to bring me comfort and support, but what would they find? Me asleep? Me apologizing from the bathroom and asking them to come back later? Me curled up on the bed in pain?

“I haven’t figured out, yet, how to incorporate what happened this summer into my being,” I mused now.

This thing that happened to me was so big, and I don’t want to forget it, and I want to somehow share it with people, make it a part of who I am. So I wonder, now, if I should have let people in, let them see my awkward, inconvenient suffering. At the time, I was worried about inconveniencing them, but of course they wouldn’t have minded. They wanted to support me, to comfort me. My instincts to be a good host got in the way of my ability to share my true suffering with people who really care about me.

I think that’s why I’m writing all this now. If I could do it again, I might do it the same way. I’m not exactly a private person, but I’m a person who likes a certain amount of control. It felt too naked and raw this summer to let the world in amidst the chaos that was already happening in my body and heart. I was already too vulnerable, too close to tears too much of the time.

Maybe seeing myself in others’ eyes over and over would have been too traumatic, and maybe I sensed that. I was already scared enough. Maybe it would have been too heavy a burden, to see fear or sorrow reflected each time a new person laid eyes on me.

But now, now that I’m stronger and more in control again, now I want to share it with them all. Now, on my own terms, I can try to convey it. This way it spreads out the pain. I don’t get the mountain of it all at once, the actual, physical suffering at the same time as the experiencing it emotionally with friends.

I delayed the emotional, friend part till now, when I can handle it better. I’m not sure if it’s the best way to do it. Maybe I’ll do it differently next time, if there is ever a next time.