"Pretend Like You Are Okay" (Part 2)

In Part 1, I talked about how I sometimes had a difficult time working while living with blood cancer. In those early years as a chronic myeloid leukemia patient, I was totally reluctant to admit to others—and more importantly, myself, that things had changed and I’d entered a whole new, unhealthy world.

God forbid, I tell anyone other than my doctor that I didn’t feel well. I didn’t talk about all the symptoms that come with CML or the side effects from the tyrosine kinase inhibitor I took - first Gleevec and then Sprycel.

I carried on with my “Pretend Like You Are Okay,” act and then secretly felt aggravated that no one appeared to acknowledge my leukemia or take my condition seriously. In hindsight, I can take some of the blame for it. I was downplaying everything related to CML, so why should anyone else try to get deeper, try to ask what was really going on?

"Susan, you have leukemia"

Thank goodness, I have exceptions. My good friend is one. She was with me the day I was diagnosed and during several doctor visits and procedures in the beginning and has taken on a maternal role. She would remind me I was entitled to feel sick, say that everything was not okay, and stop pretending. Periodically, my CML specialist will spin around in his chair and tell me, “Susan, you have leukemia.” My friend reiterates that statement to me when I need a kick in the pants and need to check myself—step back into reality.

But those first few years, my answer to “How are you?” was always, “Good, how are you?” I never let on the extent to which CML was physically and emotionally damaging for me. When issues like pneumonia, stomach pain, thrush, bleeding gums (and even toes!), and neuropathy ensued, should I dare mention them? If I dipped my foot in the water and told people, most times, they did not react well.

They’d change the subject, talk over me, or utter how we all have our little troubles to bear. No one likes a whiner, a complainer, right? That thing you have, you take a pill and you’re fine, right?

People who "get it"

So, I crawled back into my acting mode and stayed there a little longer. Luckily, through this forum, I was given the opportunity, the privilege, of sharing my story with others. The more I did that, the more I chipped away at the pretense in my personal life as well.

Thank God, there are people here who "get it," and for the first time in a long time, I don’t feel like an outsider, an exaggerator, or some “other.” I’ve found a community of people who speak the same language, have had similar experiences, and who are supportive and encouraging.

I'm done pretending

I don’t have to be afraid of the truth anymore. There’s no more “Pretend Like You Are Okay,” on days that I’m not. That has meant more people distancing themselves or fleeing entirely because they don’t want to have to think about unpleasant things. That’s okay. Pre-pandemic, I gave myself a break more often if I was physically not up to going somewhere or doing some activity that would wear me out. I started saying “no.”

A couple of other friends who have stayed the course will remind me that I can’t do everything in one day, that things are different, and I must pace myself. As time goes on and I feel the physical deterioration more profoundly, from time to time, I have to give myself a pep talk to keep going and fight through it. For as long as I’m here, I’ll try to accomplish things, support myself, and find time and energy to live in the “new normal.”

But I’m done pretending to make other people feel more comfortable.

I’m done pretending, period.

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