For many people with CML, staying afloat at work is less about forcing your way through the day and more about adjusting to what your body is telling you. Your symptoms can ebb and flow, and even a small change — a late meal or a lack of sleep — can make your day considerably more difficult to manage.
After living with CML for 24 years, it’s a reality Joannie Clements, now 83, knows all too well. She and her husband, Jerry, co-founded the CML Buster Foundation after realizing how many patients felt alone and needed a place to connect with others. Through the foundation, she runs support groups, organizes virtual and in-person meetings and helps people find a community that truly understands the realities of living with the disease.
While her own days can swing between fatigue, brain fog and stretches of energy, she uses the strength she has to remind others what remains possible. “I just thank God we’ve got a treatment that keeps us alive,” she says. “I’ve been able to live long enough to see my three children grow up, get married, get educated and start their own lives. I have eight great-grandchildren now. I’m really blessed.”
Here’s what she’s learned along the way.
Narrow your focus
Clements has a simple rule that has carried her through 24 years of living with CML: Take things one challenge at a time. She describes CML as a condition that can make even an ordinary day feel heavy, especially when work, medications and symptoms all compete for attention. She’s found that breaking the day into manageable pieces keeps her from becoming overwhelmed by everything at once. “You have to deal with what’s in front of you,” she says. “The rest can wait until you get there.”
The key is to keep your attention on what comes first and let everything else fall into line. That way, stress never takes over and there’s still enough energy left for the next hurdle. “If I can’t get something done today, then it doesn’t get done. That’s just how it is.”
Listen to your body
Your body is in charge, whether you like it or not. Clements says her energy rises and falls to its own rhythm and trying to push through fatigue never ends well. Some mornings she can move through her day with ease; on others, a missed meal or a disrupted routine can leave her feeling exhausted. “The body will tell you what it needs,” she says. “You just have to listen to it.”
For her, that can mean stepping away in the middle of the workday for a nap or a walk, or acknowledging that a task simply needs to wait. Routines can help, but only up to a point. CML is very personalized, she says, and what works for one person might fail another. Learning to adapt and not feeling guilty about how you’re doing becomes part of the job. “Be patient with your body,” she says. “Give it the food and rest it needs and it’ll take care of you.”
Be malleable
Flexibility isn’t optional, Clements says, it’s essential. It’s one of the first things CML patients learn, because the disease forces you to adjust when symptoms get in the way. “You have to go with the groove,” she says. “Just keep on trying — don’t take no for an answer.”
A good workday for her starts slowly. She often waits until 10 or 10:30 in the morning before diving in, giving herself time to see how her body feels that day. From there, she decides what she can take on and what needs to wait. If she feels wiped out, she scales back and shifts tasks to tomorrow. If she has more capacity, she moves ahead. It’s a constant process of reading her limits and finding another approach when the first one doesn’t work.
Let others in
Sharing your CML status at work is a personal decision, but Clements encourages openness because it can make your life easier. Once people understand why your energy rises and falls or why appointments shape your schedule, there’s less pressure to hide what you’re dealing with. “You don’t have to worry about slipping up,” she says.
She’s also seen how heavy that secrecy can become. A patient in one of her groups kept her diagnosis to herself for four years, afraid of how people at work or family members might react. “She finally found us and we became her family,” Clements says. “She eventually told the rest of her family that she has been suffering with leukemia for four years and they surrounded her with love. She wasn’t expecting that.”
Try to stay positive
Clements doesn’t pretend CML is easy, but she’s convinced that mindset shapes reality more than people realize. Stress has a physical effect on her and she says she’s seen her blood counts worsen during periods of intense pressure and improve when life settles down. The experience taught her that watching her attitude is every bit as important as watching her health. “An optimistic outlook is one of the best tools you have,” she says. “You deal with things as they come and you don’t take on tomorrow’s problems before they arrive.”
It’s not denial but a form of emotional care that keeps the disease from swallowing the rest of your life. It helps you reduce the load without pretending the load isn’t heavy.
Helping others helps you
For Clements, supporting other patients isn’t just advocacy, it’s something that brings meaning to her life. She leads multiple CML groups, takes calls late into the night and travels to conferences whenever she can. Her work gives her purpose and keeps her moving, even on the toughest days. “You have to get out of yourself,” she says. “Share what you’re going through. I always say, ‘you’re not complaining, you’re explaining.’”
She reminds others that nobody should try to handle CML alone. The hardest days get a little easier when you share the burden. “Don’t be afraid to let somebody else help you,” she says. “I know it’s not easy. The hardest thing I had to do in my life was to ask somebody for help.”
No matter how much time she devotes to the CML community, stepping away isn’t part of her plan. “As long as I’m making a difference in the world, I’ll keep doing this,” she says. “If there’s only one patient out there that needs me, I’ll be there.”