a doctor talking to his patient

Saying the L Word

I was in a gym for physical therapy…torn foot tendon.

He leaned over and whispered that he looked at my records and saw I had “the L word.”

“What? Leukemia?” I immediately blurted out loudly enough for others to hear.

“I’m sorry,” he said, appearing upset.

“It’s okay.”

That’s what I always say even though it is not so okay.

Trying to prove that leukemia is serious

This person meant no harm, I get that. But what I also lately realize is that I’ve spent years not being entirely honest about how leukemia affects my life and how bad it gets at times. I’m the queen of downplaying situations.

Strangely, when I’m not doing that, I’m doing the opposite. Confusing, right? I get defensive about this “thing,” I have and I feel like I’m trying to prove it is serious to other people. It’s exhausting.

Yeah, that’s right. There are people out there who think it is no big deal or cause for concern as a real illness.

Those people call it, “that thing you have.”

“That thing you have, you’re over it aren’t you?”

“How much longer are you going to have that thing? It seems like it is dragging on and on.”

Guess what? Chronic myelogenous leukemia sometimes drags on. That’s a good sign isn’t it? That’s the chronic part. Repeat after me: chronic is better than acute or blast crisis.

Changing my approach to talking about my leukemia

I’m five years in and over the past year, I’ve changed my approach to how I address the “L” –ephant in the room. (Sorry, couldn’t resist)

I’ve decided to tell it like it is and not hold back.

I say the “L” word when I feel like it whether it makes people squeamish or not.

If people can’t take the heat, maybe they’d better run for the hills. (See “hill runners,” Five Lessons I’ve Learned from CML)

Leukemia is not something to keep secret or feel defensive about.

It’s more than a "thing." It’s now a big part of my life.

I don’t spend 24 hours a day wallowing over it but I sometimes have to trot it out when I’m not up for company or an outing or a long drive somewhere.

Being honest about how I'm feeling

There are days when I’m just not well enough for a lot of activity or people. It’s better to be honest and say so than end up unable to function for days afterwards from the awful fatigue and pain that can result.

“But what’s wrong?”

“Leukemia is kicking my butt today, sorry,” is my inelegant response. “We’ll do it another time.”

So how often is too often to say the L word?

I’m not sure.

A few weeks ago, an acquaintance noticed an orange bracelet I was wearing and asked me what and who it was for.

“It’s for me. I have leukemia,” I replied.

“Wow…I’m kind of surprised you talk about it so openly.”

I shrugged. “Why wouldn’t I?”

What's your comfort level with the L word?

That’s not to say I’m going to announce my condition to people in an elevator or the mailman. Sometimes, I just say I’m not feeling well and leave it at that.

What about you? Are you comfortable saying the L word? What kind of reaction do you get from others hearing it?

I don’t mind hearing the L word. Just don’t whisper it.

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