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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    1 month ago

    This was a very interesting read. I don’t usually talk about my cancer either, but I’m starting to change my thoughts about that. Like you I don’t wallow in thoughts of my disease, but it’s there and sometimes needs to be expressed. Thank you for sharing your story. It really hit home for me.

  • Ramae Hamrin moderator
    2 months ago

    I have the opposite problem with multiple myeloma; nobody knows what it is. I have talked about it openly from the beginning, but like you, there are times I choose to share and times I don’t. When I have, I’ve enjoyed some soulful conversations. Other times, people have looked stunned and haven’t known how to react. I get it. I probably wouldn’t have either before all of this. I’m glad you are comfortable bringing up your “L” -ephant! Whether others realize it or not, we truly are all in this together!

  • Susan Gonsalves moderator author
    2 months ago

    @Ramae Hamrin–Same with CML…no one has heard of it, no one gets it and the chronic part confuses them. I had someone ask me why the pills weren’t making me feel better because “isn’t that the point of taking pills?” It’s my mission now to talk about cml even though many people don’t want to hear it.

  • Ronni Gordon moderator
    2 months ago

    What does or doesn’t make people uncomfortable is so interesting. My friend with diabetes doesn’t want people to know about it and I have no idea why. I don’t mind telling people that I had leukemia but sometimes I’m not sure when to bring it up. What’s with the person who was surprised you talked about it openly? It’s not like we did anything wrong to get it!

  • Susan Gonsalves moderator author
    2 months ago

    @Ronni Gordon – I’ll never fully understand some of the reactions I get — from the whispering dude to people who flat out don’t think it is a big deal and I’m “overdramatizing,” the situation. The TKIs save lives (or prolong them, rather) but come with a lot of side effects, sometimes serious. My life has drastically changed as I’m sure yours has.

  • Racheli Alkobey moderator
    2 months ago

    Love this!! It’s so interesting when and where we feel comfortable to share and say the full L word 😉 I didn’t want to be that girl that tells everyone that I had Lymphoma… but I also wanted people to know the incredible feat I overcame and raise awareness, you know? Thank you so much for sharing!

  • Susan Gonsalves moderator author
    2 months ago

    Love your videos. Thanks for reading.

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